Hayes' initial meeting with his neurologist was yesterday. Before I get into the details of the appointment, I'll just say that Koby and I have been thoroughly impressed and encouraged by the facilities and staff at Cook Children's. It's REFRESHING to feel relaxed at the doctor's office, and I think it's special and to their high credit that we can have that experience while waiting to meet with someone about our son's possible brain problems.
And now, onto the visit. Initial points earned by the neuro for having really unique, funky glasses. He was very thorough and walked us through the entire MRI, showing us the optic nerves coming from each eye and crossing each other in the brain, the stalk-shaped pituitary gland, and the super-faint corpus callosum.
And the remarkable thing about the MRI is that it's essentially unremarkable. The optic nerves look good, they cross where they're supposed to in the brain. Nothing wrong there. The pituitary gland looks fine. The corpus callosum looks "a little differently shaped" than other corpus callosum, but evidently indicates nothing alarming.
Good news: every thing looks in perfect order.
Still, reality tells us that we do know that something is misfiring. Somewhere.
Things we learned: Optic nerve hypoplasia encompasses more than we thought it did. Before our appointment, I thought ONH merely meant something was wrong with the long nerve bundles and/or the way they crossed in the brain. It seems as if Hayes' problem lies in the nerve head - where the nerve bundles connect to the eye. This is why the ophthalmologist could look into his dilated eyes and diagnose him ONH while the MRI looks pretty much normal.
At this point, we can't pinpoint the cause of his delayed development and low muscle tone. Is it the poor vision? Hard to tell. Right now it seems that we can cross the possibility of septo optic dysplasia (often goes hand in hand with ONH) off the list. Which is a good thing. The doctor was pretty clear about his inability to predict the future, or indeed, to even tell us much about the present. He was realistically and positively encouraging that our best actions now are to be there for Hayes at his current ability level: he will set his own curve for development, and we should act accordingly.
Sit in the office of a pediatric neurological doctor for a few minutes and you'll see all sorts of kids. In my head, when I see the children in motorized wheelchairs, their MRIs are pictures telling clear stories: 'this is why your body is this way' markers. Our doctor told us that's not always the case. In fact, it's frustratingly common to HAVE NO IDEA why a child might be profoundly mentally retarded or experience global delays or have any sort of problem. And vice versa. For example, the corpus callosum can be completely absent in a person who is completely typical - grows fine, thinks fine, moves fine. Every day I am more and more aware of how very much yet how very little we as a species know about ourselves.
The next steps for Hayes and us include two genetic tests: each will look at Hayes' chromosomes. One will look at the set as a whole and one will focus on each pair in depth, and together they may lead us in the direction of a possible chromosomal abnormality that may explain why Hayes is the way he is. Or, they may not.
The chase begins.
I've been wanting to write a post on body image for quite some time now. (Maternity will do that to you. Maybe being female alone is enough of a prerequisite.) But my thoughts have gone so far beyond mere 'body image' that I don't even know how to begin my thoughts on THE BODY. What a wondrous and terrifying composite of possibilities.
In the office I mused aloud, "After going through all this I wonder, 'How are any of us walking and talking and going around with nothing wrong?'" The doctor stopped, looked at me and very sincerely said, "I wonder that
all. the. time."
'Health' is such a vague term. If you asked me, I'd tell you that I consider Hayes to be healthier than Knox. Knox has asthma, (undiagnosed) eczema, seasonal and possible other allergies, and a severe peanut allergy. Hayes 'suffers' from nothing - he's as healthy as a horse.
Except of course for the fact that he has low muscle tone, developmental delays, and vision problems. All of which he may grow out of. Or he may not.
I'm just like most girls - ask me about my body and in seconds you'll hear about how I hate my teeth, and my nose, and how my proportions are all wrong. My eyesight is awful, my body stopped growing at five feet, and my nonexistent eyelashes and eyebrows are a plaaaaaague upon my face.
But motherhood began a change in me that I wouldn't have predicted - I came to accept and respect my body in a way I'd never experienced before. I grew and nurtured two humans IN AND WITH my body. I grew two babies and then fed those babies with my body. What?! While pregnant, I ran a 5k and felt bewilderment and wonder at the things my body could do.
And now since Hayes I've come to see that, bizarrely and utterly against the odds when you consider how much could go wildly wrong, most of us are b o r n p e r f e c t. (To me, Hayes IS perfect, but... you know.) My friend Sarah and I talk about how just because there are people starving in the world doesn't mean you don't get hungry... but Google how many chromosomal abnormalities there are and how devastating they can be, and you'll come to appreciate that if you can see this post, comprehend it, and could type a comment after doing so...
YOU'RE pretty close to perfect.
And chances are, some person would do nearly anything
to be like YOU.
And me. Even with our extra ten-fifteen-twenty pounds and non-existent eye-lashes and bad skin and asthma and allergies and thinning hair. Isn't that a weird thought?
And some parents will look at Hayes and be grateful for their blessings. And some will look at Hayes and wish their children could at least have what he has. And I don't think there's anything wrong with either of those situations - I don't think it's wrong to acknowledge and be grateful for our blessings, or in turn want the best for those we love. I don't think it's done at the expense of anyone else. And I've come to realize that the opposite of blessing doesn't necessarily mean 'curse' - and in the realization I've noticed a lot more blessings.
Detour over. Our visit wasn't negative, but it wasn't positive... Was it? I don't know. I don't feel like it was anything except what we were before and what we are now. Taking it one day at a time, not really knowing what's going on but looking at the sweet baby in front of us and doing what we can to help him get better today. After the doctor left the office, Koby and I looked at each other and just gave a kind of ...
shrug.
Moving forward... but it kind of feels like the beginning all over again.
Saturday, May 11, 2013
Sunday, May 5, 2013
Wifey
I hesitated on the point of writing/posting this entry for the world to see because I wasn't sure which end result I sought by doing so. Am I speaking in a persuasive voice? Am I trying to sell you something? Not necessarily. Am I trying to parcel out some gleaned knowledge upon readers looking for advice in their marriages?
Um, definitely not.
Turning it over in my head, I've decided that this post is categorized as an explanation. I feel that many who read this would need an explanation for the way I choose (a better word might be try... 95% of the time...) to approach my marriage.
Because it has (once again) come to my attention that I'm in the minority.
I'm not talking about being the only female at the house. I love that.
I live in a culture that is decidedly counter-intuitive to the way I was raised and indeed, the way I try to live my life. In years past I've noticed this from time to time - I won't be one of those people who laments 'what this world is coming to' or one who fondly reminisces about the 'good old days' (I'd need a separate post to enumerate all the reasons thinking like this is wholly unhelpful and frankly, inaccurate) - BUT I will share with you a moment that made me laugh to myself a few nights ago.
My mother-in-law shared via Facebook this interview that aired on Rock Center. If you don't feel like clicking the link (but you should), I'll sum up. A world-class female athlete admits that in her house and family, her husband is the leader and she is the submissive wife. (And interestingly, never refers to a spiritual reason to do so.)
Is your foundation shaken? Are you offended and up in arms? Is your very mind shattered by this sensational idea? If you grew up like I did, probably not. Colossians 3:18, 1 Peter 3:1, Ephesians 5:22 - you can probably recite them with me. Or at least paraphrase this way: Wives, submit to your husbands.
I don't mind telling you that for most of my life, I was not looking forward to being a wife. At least, not a submissive wife. Nevertheless, I knew that this, for some reason, was the model multiple writers of the Bible had encouraged others to live by.
This won't be a post on marital advice. The idea is laughable - there are VERY few arenas in which I'd consider myself equipped to teach: give me Harry Potter trivia or a lesson on complimentary colors, and I'd be your girl. Marriage? I'd be the one signing up to take the class. Bringing paper to take notes.
No, this is a voice from the other side of the story for you readers who cannot comprehend a woman in the year 2013 gladly taking a submissive character role in one of the most important relationships of her life.
***
I understand the other side. I understand the women who are offended and outraged by a fellow female encouraging others to let the man (ugh) play the dominant role in the marriage relationship. Maybe fighting to be taken seriously in society, in the workplace, has steeped itself as an autopilot mode so deeply within us that we can't comprehend 'losing ground' at home. I get it. I respect it.
I'm a fiercely independent person. I need to lead. I do not seem like a submissive person. (I have to convince my husband that I have been submissive.) I love to be right. It takes
every. single. ounce. of. my. self. control.
not to correct someone when I hear them make an error. I mean, we're talking about overheard conversations between two people in line ahead of me at WalMart. It's a problem, it's a battle, and lots of times I lose. I know it, I hate it. (Are you praying for my husband?) So when I tell you that I have chosen to be a submissive wife, I hope you take it within context. (And just help a girl out and refrain from updating your Facebook status with grammatical errors.)
For a long time, my mind told me that 'submission' equaled 'loss'. Losing an argument, losing an identity, losing independence. Losing control. (Yikes!!!) Submission meant a clear winner and an equally clear loser. Superior and inferior. When Koby and I were dating in college, I considered us to be separate entities, yet ones who had chosen to be together. (I am NOT saying here that this is wrong - dating and marriage are completely different playing fields.) But I would have balked at the very idea of Koby leading me anywhere. What I did not realize is that he was already setting the tone for our relationship: where he went, I went. What he did, I did. What he said, I said. His friends became my friends.
I don't think this is an example of the 'losing your identity' thing that happens when girls with issues get into unhealthy relationships. I think it's just what happens (to varying degrees) when you get into a relationship. My friends became Koby's friends too, and wherever we went, we went together. But for better or for worse, Koby was the natural leader of our relationship (although I would have punched you in the face for saying that to my 21 year old self).
But eventually we got married. And that whole 'submit to your husband' thing suddenly applied to ME. Because I was the wife, and I was supposed to be submissive, whatever that means.
Here's what I 've learned about being submissive (because I have to work at it
every
single
day)
1. Being submissive does not mean that I am less intelligent than my husband.
2. Being submissive does not mean that my husband makes all my decisions for me, and now, for our family.
3. Being submissive does not mean that I do not voice my opinions. It doesn't mean that my voice isn't valued and considered and respected.
4. Being submissive does not mean that I have lost my identity.
5. Being submissive doesn't mean I am incapable.
I have found that I can settle (and I mean this in the peaceful sense, not in the 'losing' sense) into a submissive role more easily than I ever could have imagined.
It was hard for me to pinpoint areas in which to be the 'submissive' and 'dutiful' wife in the first few months of marriage because Koby is not a 'commanding' person. Nor did we encounter many cataclysmic, core-to-core differences that would require me to utterly submit to his stated will. And to me, a submissive wife was always a counterpart to a commanding husband.
Basically, it's embarrassing how little I knew about marriage. Like, 365 days in to the marriage.
-See also: how much I knew about babies before having one.-
Koby and I naturally found a 'flow' that suited our needs: we both cook and clean, Koby tends to the dogs and the trash, I tend to the finances. (Oh, is that why we have none?) These roles
suited our skill sets and for awhile the whole 'submissive wife' thing never seemed as if it would surface.
Then I saw this video:
And I realized that submission had little to do with commands and obedience, and much more to do with service and support.
And in marriage I learned that I want to be led.
Let me say here that a wife's submission brings her peace when her husband is functioning from a place where he considers her interests as well as his own. (This spans any culture, any spiritual foundation. I don't care, it matters.) And once they have children, theirs as well. When he cares deeply about her well-being, she can freely voice her opinions and allow him to make decisions for themselves or their family knowing that he will do so with their best interests in mind.
My submission looks like this: daily service and encouragement. I suck at it, mostly. But I'm trying. Our biggest 'wife-submission moment' looked like this: Koby had a job opportunity that would potentially us take away from our home and (my dream) job(s). He asked (I think this is vital) and I gave him my honest and supportive opinion in favor of the move, but ultimately left the final decision up to him. And I slept peacefully knowing that whatever choice he made had been weighed and measured carefully with Knox, me, and unborn Hayes in the balance.
Gabby Reece's words may echo mine, I'm not sure, I haven't read her book, but the fact that her admission to a choice to live in yield to her husband has caused such an uproar makes me giggle. Because the notion is thousands of years old.
And so I say to any who may think me weak, why should I be ashamed that I am submissive to my (caring, loving, loyal) husband? I would be proud to hear him say that he craves my support and relies on my encouragement.
Isn't that the same?
Um, definitely not.
Turning it over in my head, I've decided that this post is categorized as an explanation. I feel that many who read this would need an explanation for the way I choose (a better word might be try... 95% of the time...) to approach my marriage.
Because it has (once again) come to my attention that I'm in the minority.
I'm not talking about being the only female at the house. I love that.
I live in a culture that is decidedly counter-intuitive to the way I was raised and indeed, the way I try to live my life. In years past I've noticed this from time to time - I won't be one of those people who laments 'what this world is coming to' or one who fondly reminisces about the 'good old days' (I'd need a separate post to enumerate all the reasons thinking like this is wholly unhelpful and frankly, inaccurate) - BUT I will share with you a moment that made me laugh to myself a few nights ago.
My mother-in-law shared via Facebook this interview that aired on Rock Center. If you don't feel like clicking the link (but you should), I'll sum up. A world-class female athlete admits that in her house and family, her husband is the leader and she is the submissive wife. (And interestingly, never refers to a spiritual reason to do so.)
Is your foundation shaken? Are you offended and up in arms? Is your very mind shattered by this sensational idea? If you grew up like I did, probably not. Colossians 3:18, 1 Peter 3:1, Ephesians 5:22 - you can probably recite them with me. Or at least paraphrase this way: Wives, submit to your husbands.
I don't mind telling you that for most of my life, I was not looking forward to being a wife. At least, not a submissive wife. Nevertheless, I knew that this, for some reason, was the model multiple writers of the Bible had encouraged others to live by.
This won't be a post on marital advice. The idea is laughable - there are VERY few arenas in which I'd consider myself equipped to teach: give me Harry Potter trivia or a lesson on complimentary colors, and I'd be your girl. Marriage? I'd be the one signing up to take the class. Bringing paper to take notes.
No, this is a voice from the other side of the story for you readers who cannot comprehend a woman in the year 2013 gladly taking a submissive character role in one of the most important relationships of her life.
***
I understand the other side. I understand the women who are offended and outraged by a fellow female encouraging others to let the man (ugh) play the dominant role in the marriage relationship. Maybe fighting to be taken seriously in society, in the workplace, has steeped itself as an autopilot mode so deeply within us that we can't comprehend 'losing ground' at home. I get it. I respect it.
I'm a fiercely independent person. I need to lead. I do not seem like a submissive person. (I have to convince my husband that I have been submissive.) I love to be right. It takes
every. single. ounce. of. my. self. control.
not to correct someone when I hear them make an error. I mean, we're talking about overheard conversations between two people in line ahead of me at WalMart. It's a problem, it's a battle, and lots of times I lose. I know it, I hate it. (Are you praying for my husband?) So when I tell you that I have chosen to be a submissive wife, I hope you take it within context. (And just help a girl out and refrain from updating your Facebook status with grammatical errors.)
For a long time, my mind told me that 'submission' equaled 'loss'. Losing an argument, losing an identity, losing independence. Losing control. (Yikes!!!) Submission meant a clear winner and an equally clear loser. Superior and inferior. When Koby and I were dating in college, I considered us to be separate entities, yet ones who had chosen to be together. (I am NOT saying here that this is wrong - dating and marriage are completely different playing fields.) But I would have balked at the very idea of Koby leading me anywhere. What I did not realize is that he was already setting the tone for our relationship: where he went, I went. What he did, I did. What he said, I said. His friends became my friends.
I don't think this is an example of the 'losing your identity' thing that happens when girls with issues get into unhealthy relationships. I think it's just what happens (to varying degrees) when you get into a relationship. My friends became Koby's friends too, and wherever we went, we went together. But for better or for worse, Koby was the natural leader of our relationship (although I would have punched you in the face for saying that to my 21 year old self).
But eventually we got married. And that whole 'submit to your husband' thing suddenly applied to ME. Because I was the wife, and I was supposed to be submissive, whatever that means.
Here's what I 've learned about being submissive (because I have to work at it
every
single
day)
1. Being submissive does not mean that I am less intelligent than my husband.
2. Being submissive does not mean that my husband makes all my decisions for me, and now, for our family.
3. Being submissive does not mean that I do not voice my opinions. It doesn't mean that my voice isn't valued and considered and respected.
4. Being submissive does not mean that I have lost my identity.
5. Being submissive doesn't mean I am incapable.
I have found that I can settle (and I mean this in the peaceful sense, not in the 'losing' sense) into a submissive role more easily than I ever could have imagined.
It was hard for me to pinpoint areas in which to be the 'submissive' and 'dutiful' wife in the first few months of marriage because Koby is not a 'commanding' person. Nor did we encounter many cataclysmic, core-to-core differences that would require me to utterly submit to his stated will. And to me, a submissive wife was always a counterpart to a commanding husband.
Basically, it's embarrassing how little I knew about marriage. Like, 365 days in to the marriage.
-See also: how much I knew about babies before having one.-
Koby and I naturally found a 'flow' that suited our needs: we both cook and clean, Koby tends to the dogs and the trash, I tend to the finances. (Oh, is that why we have none?) These roles
suited our skill sets and for awhile the whole 'submissive wife' thing never seemed as if it would surface.
Then I saw this video:
And I realized that submission had little to do with commands and obedience, and much more to do with service and support.
And in marriage I learned that I want to be led.
Let me say here that a wife's submission brings her peace when her husband is functioning from a place where he considers her interests as well as his own. (This spans any culture, any spiritual foundation. I don't care, it matters.) And once they have children, theirs as well. When he cares deeply about her well-being, she can freely voice her opinions and allow him to make decisions for themselves or their family knowing that he will do so with their best interests in mind.
My submission looks like this: daily service and encouragement. I suck at it, mostly. But I'm trying. Our biggest 'wife-submission moment' looked like this: Koby had a job opportunity that would potentially us take away from our home and (my dream) job(s). He asked (I think this is vital) and I gave him my honest and supportive opinion in favor of the move, but ultimately left the final decision up to him. And I slept peacefully knowing that whatever choice he made had been weighed and measured carefully with Knox, me, and unborn Hayes in the balance.
Gabby Reece's words may echo mine, I'm not sure, I haven't read her book, but the fact that her admission to a choice to live in yield to her husband has caused such an uproar makes me giggle. Because the notion is thousands of years old.
And so I say to any who may think me weak, why should I be ashamed that I am submissive to my (caring, loving, loyal) husband? I would be proud to hear him say that he craves my support and relies on my encouragement.
Isn't that the same?
 |
| Photo by Brooke Ogilvie |
Wednesday, April 24, 2013
MRI Results
I took the call at work today.
See, I THOUGHT it was a call from Cook Childrens anyway... I conveniently left my school-issued iPad there when we had our MRI appointment last Friday. That's right.
So I took the call in class, my twelve three-to-five-year-old children waiting (not so) patiently and (not so) quietly as my aide struggled to give them their lunches without my help, and I was startled to hear that the person on the other end of the line was ready to give me MRI test results for Hayes Andrews.
Let's pause for a moment and think about that job. And I thought mine was hard.
He went on to let me know that the optic nerve looked good - no significant underdevelopment at all. In fact, he kept going on about it so much I made him stop and I asked, "So.... he does have optic nerve hypoplasia, right?" He does. But the optic nerve ISN'T super small. Which is good news.
Great news.
Miraculous news.
My baby can see.
He did report on another finding, however. Hayes' corpus callosum appears to be smaller than normal. In my "OHMYGOSHHEPROBABLYWON'TBEBLIND" euphoria, I didn't stop and ask for the exact comparison between Hayes' corpus callosum and the average 5 month old baby's. But I don't regret it. It was a good call, a good moment, an answered prayer. Correction: answered prayers. Because I know Hayes Andrews has been lifted up by countless people over the last few weeks and our family is incredibly grateful and humbled.
But anyway. If you haven't tabbed over and Googled 'corpus callosum' yet, here's what you're missing.
The corpus callosum is a big band of fibers connecting the right and left hemispheres of the brain. Essentially, they help the two halves 'talk' to each other. The two halves being able to communicate like this is vital for every action the body needs - from basic movement to critical thinking skills. Disorders of the corpus callosum can range from complete agenesis (absence) to partial development to abnormal development. These disorders can affect motor skills, critical thinking skills, social adeptness and other things.
I'm praising God today because I feel like we've been blessed. I told my mom while we were at the appointment for Hayes' MRI that I had a peace about Hayes, and I meant it. The peace doesn't mean I'm not taking this seriously, it doesn't mean that I don't acknowledge that what we're dealing with is a 'big deal'. I've just realized that nothing a doctor tells me can utterly devastate me because NO ONE knows my son more than my Lord. Humans can't even write all there is to know about optic nerve hypoplasia. I'm guessing now that not one doctor on this Earth could tell me precisely what caused my son's optic nerve and corpus callosum to develop in the ways they did. But God can. Not one doctor can tell me where my son will be in six months. But my God can.
There isn't a human on this planet who can look at a picture of my son's brain (amazing though it is that we can acquire one) and tell me where he will be at ten years old or what he will have accomplished. But my God can.
Hayes Brandon was designed by the Creator with a purpose and he was delicately, intricately, beautifully and wonderfully made by a loving Father. No one, despite their degrees or accolades or accomplishments, will be able to tell me beyond a shadow of a doubt, anything about his future. No one can rule out what he may or may not be.
My God is a Healer and maybe he won't heal Hayes, but he's healing me.
This blog will not become a site dedicated to optic nerve hypoplasia. It won't become a site about the intricacies of the corpus callosum. Because my life isn't just about that, and neither is Hayes'. Hayes is more than the way his brain developed. Frankly, it would be exhausting and selfish to let the magnitude of this condition overwhelm me daily. It's not my job to worry today about whether or not Hayes will be able to hit a ball off a tee or drive a girl to the Prom. Today I'm thinking about whether or not it's been four hours since he last ate, if his feet are cold, if Knox got enough to eat at dinner and whether or not Koby felt like I appreciated all he did for me today. So if my next post is a petty one about, say, the evils of cell phone carrier companies, you'll know that I'm not neglecting or ignoring the fact that my son has a brain disorder. I'm just still a human being.
See, I THOUGHT it was a call from Cook Childrens anyway... I conveniently left my school-issued iPad there when we had our MRI appointment last Friday. That's right.
So I took the call in class, my twelve three-to-five-year-old children waiting (not so) patiently and (not so) quietly as my aide struggled to give them their lunches without my help, and I was startled to hear that the person on the other end of the line was ready to give me MRI test results for Hayes Andrews.
Let's pause for a moment and think about that job. And I thought mine was hard.
He went on to let me know that the optic nerve looked good - no significant underdevelopment at all. In fact, he kept going on about it so much I made him stop and I asked, "So.... he does have optic nerve hypoplasia, right?" He does. But the optic nerve ISN'T super small. Which is good news.
Great news.
Miraculous news.
My baby can see.
He did report on another finding, however. Hayes' corpus callosum appears to be smaller than normal. In my "OHMYGOSHHEPROBABLYWON'TBEBLIND" euphoria, I didn't stop and ask for the exact comparison between Hayes' corpus callosum and the average 5 month old baby's. But I don't regret it. It was a good call, a good moment, an answered prayer. Correction: answered prayers. Because I know Hayes Andrews has been lifted up by countless people over the last few weeks and our family is incredibly grateful and humbled.
But anyway. If you haven't tabbed over and Googled 'corpus callosum' yet, here's what you're missing.
The corpus callosum is a big band of fibers connecting the right and left hemispheres of the brain. Essentially, they help the two halves 'talk' to each other. The two halves being able to communicate like this is vital for every action the body needs - from basic movement to critical thinking skills. Disorders of the corpus callosum can range from complete agenesis (absence) to partial development to abnormal development. These disorders can affect motor skills, critical thinking skills, social adeptness and other things.
I'm praising God today because I feel like we've been blessed. I told my mom while we were at the appointment for Hayes' MRI that I had a peace about Hayes, and I meant it. The peace doesn't mean I'm not taking this seriously, it doesn't mean that I don't acknowledge that what we're dealing with is a 'big deal'. I've just realized that nothing a doctor tells me can utterly devastate me because NO ONE knows my son more than my Lord. Humans can't even write all there is to know about optic nerve hypoplasia. I'm guessing now that not one doctor on this Earth could tell me precisely what caused my son's optic nerve and corpus callosum to develop in the ways they did. But God can. Not one doctor can tell me where my son will be in six months. But my God can.
There isn't a human on this planet who can look at a picture of my son's brain (amazing though it is that we can acquire one) and tell me where he will be at ten years old or what he will have accomplished. But my God can.
Hayes Brandon was designed by the Creator with a purpose and he was delicately, intricately, beautifully and wonderfully made by a loving Father. No one, despite their degrees or accolades or accomplishments, will be able to tell me beyond a shadow of a doubt, anything about his future. No one can rule out what he may or may not be.
My God is a Healer and maybe he won't heal Hayes, but he's healing me.
This blog will not become a site dedicated to optic nerve hypoplasia. It won't become a site about the intricacies of the corpus callosum. Because my life isn't just about that, and neither is Hayes'. Hayes is more than the way his brain developed. Frankly, it would be exhausting and selfish to let the magnitude of this condition overwhelm me daily. It's not my job to worry today about whether or not Hayes will be able to hit a ball off a tee or drive a girl to the Prom. Today I'm thinking about whether or not it's been four hours since he last ate, if his feet are cold, if Knox got enough to eat at dinner and whether or not Koby felt like I appreciated all he did for me today. So if my next post is a petty one about, say, the evils of cell phone carrier companies, you'll know that I'm not neglecting or ignoring the fact that my son has a brain disorder. I'm just still a human being.
Friday, April 12, 2013
This is Friday Night
This week has been rough.
Nothing's gone wrong, per se. Aside from my children conspiring against Koby and me and planning our demise due to lack of sleep, we're fine.
I've just realized that I'm one knee scrape away from a meltdown.
Knox and Hayes are both well (ish) but I've come to notice that my holding-it-together-ness can be broken apart at the tiniest cough, a sight of phlegm, or indeed, a knee scrape. Earlier this week I thought Knox MAY have had the beginning of a staph infection (turned out to be a little knot leftover from his antibiotic shot a few weeks ago) and I actually thought I might lose my mind over it. Seconds before finding the panic-inducing bump I was a normal, functioning female. Post lump, my heart was beating fast and I was near Biblical mourning status. Tearing of clothing, sprinkling of ashes, weeping and gnashing of teeth. The works. (I recovered in about 15 minutes after remembering the shot. Awesome. Didn't feel stupid at all.)
Hayes has been having some party time with his friend Nebulizer again to ward off any lung infections that might cause him to re-reschedule his MRI. In similar panicky fashion, every time he coughs I see him as a five year old who hasn't been able to have his MRI yet because he can't go six full weeks without getting sick. (Though he's currently listening to Ride of the Valkyries and kicking like a maniac, so I'd say he's fine.)
So, Hayes update:
MRI : rescheduled for April 19 due to Hayes' recent RSV.
ECI evaluation: April 16. (Explanation to follow.)
Keep prayin', y'all.
And he's five months old. Hayes is getting stronger every day and is holding his head up more frequently and steadily. He's still not sitting well but I know he'll keep making progress at his own pace. The ladies at the daycare where I work love watching him get excited about the toys they put across his crib for him to see - they thing he's making progress too. He's making better eye contact and his Lovie swears he's a little trickster and I agree! He still loves to look at lights. Next week he'll be evaluated by some professionals from the North Texas Rehabilitation Center for Early Childhood Intervention services. I'm really excited to learn about the exercises, therapy, etc. that we'll be able to get for Hayes.
But I really struggled with frustration this week because of related issues. As a teacher who's sat in her fair share of ARD meetings (pardon my teacher-speak), I know firsthand that one would be hard-pressed to find a fiercer love than that of a parent. Parents will be downright asses about their kids. All is fair in love and free appropriate public education. (Teachers, laugh with me.) But really, I get it. As a logical human, I know that Hayes Brandon Andrews, Texan, age 5 months, is not a likely priority to any other person not related to him. I know that.
But I was still frustrated when I felt like I had to repeatedly call to make sure his paperwork was being sped along to its final destination to acquire these services. These services that will HELP MY BABY BE ABLE TO SEE AND USE HIS MUSCLES, I emphasized in my mind. I kept fighting this outrageous anger as I imagined someone neglecting his case information. I realized that I, one who hates to be the 'squeaky wheel', am completely capable of being the 'full-scale tire blowout on the interstate while doing 75 in a 2000 Ford Explorer with Firestone tires' when it comes to my kids. And I know that this side of crazy is lurking in any mother, in any parent, at any time. My crazy just seems to be bobbing a bit closer to the surface these days.
Like I said, one knee scrape this side of a meltdown.
We have another child too, we didn't forget. His name is Knox and he is something else. Things he's doing lately that I love or will love to remember (parents, you know what I mean):
Nothing's gone wrong, per se. Aside from my children conspiring against Koby and me and planning our demise due to lack of sleep, we're fine.
I've just realized that I'm one knee scrape away from a meltdown.
Knox and Hayes are both well (ish) but I've come to notice that my holding-it-together-ness can be broken apart at the tiniest cough, a sight of phlegm, or indeed, a knee scrape. Earlier this week I thought Knox MAY have had the beginning of a staph infection (turned out to be a little knot leftover from his antibiotic shot a few weeks ago) and I actually thought I might lose my mind over it. Seconds before finding the panic-inducing bump I was a normal, functioning female. Post lump, my heart was beating fast and I was near Biblical mourning status. Tearing of clothing, sprinkling of ashes, weeping and gnashing of teeth. The works. (I recovered in about 15 minutes after remembering the shot. Awesome. Didn't feel stupid at all.)
Hayes has been having some party time with his friend Nebulizer again to ward off any lung infections that might cause him to re-reschedule his MRI. In similar panicky fashion, every time he coughs I see him as a five year old who hasn't been able to have his MRI yet because he can't go six full weeks without getting sick. (Though he's currently listening to Ride of the Valkyries and kicking like a maniac, so I'd say he's fine.)
So, Hayes update:
MRI : rescheduled for April 19 due to Hayes' recent RSV.
ECI evaluation: April 16. (Explanation to follow.)
Keep prayin', y'all.
And he's five months old. Hayes is getting stronger every day and is holding his head up more frequently and steadily. He's still not sitting well but I know he'll keep making progress at his own pace. The ladies at the daycare where I work love watching him get excited about the toys they put across his crib for him to see - they thing he's making progress too. He's making better eye contact and his Lovie swears he's a little trickster and I agree! He still loves to look at lights. Next week he'll be evaluated by some professionals from the North Texas Rehabilitation Center for Early Childhood Intervention services. I'm really excited to learn about the exercises, therapy, etc. that we'll be able to get for Hayes.
But I really struggled with frustration this week because of related issues. As a teacher who's sat in her fair share of ARD meetings (pardon my teacher-speak), I know firsthand that one would be hard-pressed to find a fiercer love than that of a parent. Parents will be downright asses about their kids. All is fair in love and free appropriate public education. (Teachers, laugh with me.) But really, I get it. As a logical human, I know that Hayes Brandon Andrews, Texan, age 5 months, is not a likely priority to any other person not related to him. I know that.
But I was still frustrated when I felt like I had to repeatedly call to make sure his paperwork was being sped along to its final destination to acquire these services. These services that will HELP MY BABY BE ABLE TO SEE AND USE HIS MUSCLES, I emphasized in my mind. I kept fighting this outrageous anger as I imagined someone neglecting his case information. I realized that I, one who hates to be the 'squeaky wheel', am completely capable of being the 'full-scale tire blowout on the interstate while doing 75 in a 2000 Ford Explorer with Firestone tires' when it comes to my kids. And I know that this side of crazy is lurking in any mother, in any parent, at any time. My crazy just seems to be bobbing a bit closer to the surface these days.
Like I said, one knee scrape this side of a meltdown.
We have another child too, we didn't forget. His name is Knox and he is something else. Things he's doing lately that I love or will love to remember (parents, you know what I mean):
- When I kiss him all over his face he giggles and says "Moooooore??". We do this over and over and over again. Often.
- When he would like to direct my path, he gets behind me (or anyone so silly as to be sitting when they should be doing his bidding) and pushes on my back with all his strength and says "Pooooooosh" (push)
- He loves to say "No, don't" and "Stop it"
- He calls strawberries 'strawbies' or 'chobbies' and the look of pure joy and ecstatic anticipation on his face as I hold one in front of his eyes is worth digging up the yard and planting a ginormous strawberry patch.
- He sported the very closest hairstyle to a mullet he'll ever have today as (in my temporary insanity to get him to sleep) I gave him a haircut last night before bedtime. Knox hates the clippers, so it was short-lived, but I think I may have cut down his nighttime sweating to a mere gallon last night from that alteration alone.
- He has been off and on about the switch from crib to bed. Very quickly he developed the at first cute, but then very annoying habit of standing by his bedroom door on the inside and saying "Knockkkkkk, knockkkk" when he wants out.
- He loves to pray.
- He is moody. Or maybe just a toddler.
 |
| Here is Knox, with the unfinished haircut I gave him, talking about his unfinished haircut while getting a bath. |
Monday, April 1, 2013
Fools in April
April is here. April is here! April is here?
As promised (and under multiple threats) I am here with an update! Hayes had his first appointment today with his endocrinologist and every thing went well. I say every thing went well - this seemed mostly like a 'meet and greet', but it definitely felt positive. Since Hayes is already five months old (tomorrow!), it seems that if there were serious problems with hormone deficiencies, they would have manifested themselves by now (i.e. seizures from low blood sugar, underdeveloped parts and poor growth). The doctor ordered a gamut of hormone blood tests, answered questions I had, and arranged for a follow-up in four weeks, at which point we'll review both the blood work and the MRI results and come up with a game plan based on what we find. Our 'game plan' means basically, how often we'll need to assess his hormone levels and whether or not we'll need to begin hormone therapy after we know more about Hayes' condition.
Hayes was super brave and strong during the lab work while the tech took 10 ml of blood (2 tsp). He hardly cried and I am so proud of him! He is doing much better with his head control and making progress at his own pace. My parents were here this weekend (Mom was able to come with me to the endo. appt., thanks God for good timing) and kept remarking in amazement what an AWESOME baby he is. Seriously, the best.
For inquisitive minds, here are some important upcoming dates for Baby Hayes:
April 9 - MRI
April 29 - Endocrinology Appointment to review hormone/MRI results
June 18 - Vision Check-up
Before I go on, Koby and I want to thank every one for their comments, texts, messages, calls, letters (yes! people still send mail!), and thoughts over the past few weeks. We are overwhelmed by your support and in addition to being grateful for our two astounding, amazing, spectacular children, we have been blessed with wonderful family and friends. I have been encouraged and made wiser by the compassion and advice received from so many who read the blog and it is good for my soul. Thank you.
-Commercial Break-
So, you may be wondering just why it is that I keep this blog. Obviously, it's a great (and maybe slightly narcissistic?) way to keep in touch with family and friends for those of us who are more verbose than a Tweet will allow. (And I can't convince my parents that Twitter is cool, so that's out for them anyways.) It's a therapeutic outlet for me, a place to gather thoughts and organize them. A lot of people relayed to me that they appreciate my transparency and I HOPE that one day someone who is struggling with the same things as I am will find these posts encouraging. That's my prayer, anyway, and it's the boost I need when I feel like I just can't bring myself to be honest about my feelings on something that's challenging or difficult or controversial.
But one foundational purpose of this blog is much more selfish and sad than all of that. Quite simply, I'd probably forget most of what's happening in our lives at this moment if it weren't for this blog. (Almost) strangers who read this blog have actually reminded me of things I'd forgotten about that happened in my own life, to me because they read this blog. It's scary, people. (Not the strangers, how much I forget and how quickly I do so.) I blame some of it on the immediacy of our culture - we take in so much information during 24 hours it's wondrous to me that we don't all need 12 hours of sleep to compensate each night.
For instance, right now, Knox is playing with his toys behind me and talking to himself about chickens, and cats, and trains, and unless I take a picture of it and post it on this blog I probably won't remember what this is like. This blog is like my digital baby book for Knox and Hayes. (I do keep real ones too.) But it's also a marriage book. And a life book.
Here's what I'll forget about from the Blog Famine of 2012-13 if I don't post about it here:
DECEMBER
JANUARY
FEBRUARY
MARCH
And now we're caught up!
Are your eyes bleeding? I will try and never let this happen again, for all our sakes.
Keep praying for Hayes! :-)
As promised (and under multiple threats) I am here with an update! Hayes had his first appointment today with his endocrinologist and every thing went well. I say every thing went well - this seemed mostly like a 'meet and greet', but it definitely felt positive. Since Hayes is already five months old (tomorrow!), it seems that if there were serious problems with hormone deficiencies, they would have manifested themselves by now (i.e. seizures from low blood sugar, underdeveloped parts and poor growth). The doctor ordered a gamut of hormone blood tests, answered questions I had, and arranged for a follow-up in four weeks, at which point we'll review both the blood work and the MRI results and come up with a game plan based on what we find. Our 'game plan' means basically, how often we'll need to assess his hormone levels and whether or not we'll need to begin hormone therapy after we know more about Hayes' condition.
Hayes was super brave and strong during the lab work while the tech took 10 ml of blood (2 tsp). He hardly cried and I am so proud of him! He is doing much better with his head control and making progress at his own pace. My parents were here this weekend (Mom was able to come with me to the endo. appt., thanks God for good timing) and kept remarking in amazement what an AWESOME baby he is. Seriously, the best.
For inquisitive minds, here are some important upcoming dates for Baby Hayes:
April 9 - MRI
April 29 - Endocrinology Appointment to review hormone/MRI results
June 18 - Vision Check-up
Before I go on, Koby and I want to thank every one for their comments, texts, messages, calls, letters (yes! people still send mail!), and thoughts over the past few weeks. We are overwhelmed by your support and in addition to being grateful for our two astounding, amazing, spectacular children, we have been blessed with wonderful family and friends. I have been encouraged and made wiser by the compassion and advice received from so many who read the blog and it is good for my soul. Thank you.
-Commercial Break-
So, you may be wondering just why it is that I keep this blog. Obviously, it's a great (and maybe slightly narcissistic?) way to keep in touch with family and friends for those of us who are more verbose than a Tweet will allow. (And I can't convince my parents that Twitter is cool, so that's out for them anyways.) It's a therapeutic outlet for me, a place to gather thoughts and organize them. A lot of people relayed to me that they appreciate my transparency and I HOPE that one day someone who is struggling with the same things as I am will find these posts encouraging. That's my prayer, anyway, and it's the boost I need when I feel like I just can't bring myself to be honest about my feelings on something that's challenging or difficult or controversial.
But one foundational purpose of this blog is much more selfish and sad than all of that. Quite simply, I'd probably forget most of what's happening in our lives at this moment if it weren't for this blog. (Almost) strangers who read this blog have actually reminded me of things I'd forgotten about that happened in my own life, to me because they read this blog. It's scary, people. (Not the strangers, how much I forget and how quickly I do so.) I blame some of it on the immediacy of our culture - we take in so much information during 24 hours it's wondrous to me that we don't all need 12 hours of sleep to compensate each night.
For instance, right now, Knox is playing with his toys behind me and talking to himself about chickens, and cats, and trains, and unless I take a picture of it and post it on this blog I probably won't remember what this is like. This blog is like my digital baby book for Knox and Hayes. (I do keep real ones too.) But it's also a marriage book. And a life book.
Here's what I'll forget about from the Blog Famine of 2012-13 if I don't post about it here:
DECEMBER
 |
| Melissa graduated from UT Tyler in mid-December with her Master's in Business Administration. Knox was sick. |
 |
| Christmas Eve morning in Graham. |
 |
| About two months post-Christmas Judson proposed to Elizabeth... so Koby and I are getting a brother in law and Knox and Hayes are getting an UNCLE! |
 |
| Christmas Eve in Throckmorton - Knox was not sick and we discovered just how much he will do for attention. |
 |
| Hayes' first Christmas. |
 |
| White Christmas Day in Bryson. |
 |
| Day after Christmas in Austin. |
 |
| Melissa and I on New Year's Eve day at her studio apartment in Deep Ellum. She will kill me for putting this on the blog but isn't she pretty without makeup? |
 |
| Married friends Clay and Belinda in this picture - Baby Maybelin is here too but not many people knew that yet! |
 |
| Koby and I ate dinner with Clay and Belinda, then went back to Melissa's apartment and watched movies. I fell asleep before 11:00 pm. Happy New Year. |
 |
| On New Year's Day we flew to Vegas. I think this is the first night - I'm by the Fountains at the Bellagio. |
 |
| Our hotel/casino in Vegas where we lost about $25 on the slot machines. Apparently we know nothing about gambling. |
 |
| Back in Bryson. Knox has the flu in this picture, but we don't know it yet. |
 |
| Can't you tell? Also, I don't know why I let him wear that shirt. |
 |
| Playing hooky from school. Not really. Knox had both types of the flu (A and B) and I got it too, so we had to stay home for a few days. |
FEBRUARY
 |
| I forced this mural activity upon my son to make self-proclaimed world's cutest Valentine cards. |
 |
| Knox ate an Oreo. |
 |
 |
| A week before Spring Break, Knox came down with strep throat and an ear infection. The Friday before Spring Break we found out Hayes had RSV at his four months checkup (a few hours after this photo was taken). Koby and I both got a 12 hour stomach flu on the Monday of Spring Break. It was a weird few weeks. |
 |
| A few weeks after this Knox got sick again. No idea what it was that time. |
 |
| Over Spring Break (once every one was well) we took the boys to the Abilene Zoo. First zoo trip! |
And now we're caught up!
Are your eyes bleeding? I will try and never let this happen again, for all our sakes.
Keep praying for Hayes! :-)
Tuesday, March 19, 2013
What's Wrong with Baby Hayes?
Dearest Blogfans and friends,
I have totally been avoiding you. Somewhere in between this moment:
and this one:
I began to experience the seedlings of fear and apprehension about Hayes and his development, and I didn't want to talk to anyone about it. And since these fears were so linked in my mind with Hayes himself, it was really hard to talk to anyone with the 'new baby' subject off-limits. I withdrew from friends, I haven't blogged. I didn't even share my fears with my husband until I couldn't contain them anymore and bombarded him in the middle of a school day with a torrent of terrified text messages.
While deciding how to write this post, I hesitated upon an approach: Ugly and honest? Purely medical jargon? Spiritual? Optimistic? We're going with a mix... all of the above. For the past twenty-four hours I feel like Koby and I have been choosing a mindset (because that is the singular beautiful thing in one's own control) as if a couple might shop around for a new car - considering all the angles, for a new car can either bring a family comfort or stress; it will keep them moving against all odds or leave its passengers broken down in unfamiliar territory.
Back to my fear seedlings, their origin. This voice is the dramatic, emotions-based voice: I was afraid there was something we'd be discovering about Hayes from the moment I held him for the first time. Perhaps it was the residual feelings of paranoia remembered from his first in-depth ultrasound when the doctors found choroid plexus cysts. Maybe it was a mother's intuition, but it probably wasn't. Maybe it was pure pessimism. But in any case, instead of the peace and fulfillment I thought I'd feel holding him for the first time, I felt panic. Koby left the room to get me food and I frantically began searching every inch of Hayes, looking for the something that was making me feel this way. I never told Koby about this moment of terror I had (until recently) because I was embarrassed - who acts like that in the first moments of her son's life?
But Koby came back and I smiled, we left the hospital. Hayes grew, and the feelings went away for the most part.
Until he turned about two months old. Hayes was doing a few things that concerned me - his eyes were crossing more than I remembered Knox's ever doing, and seemed to be crossing differently to me. Knox's seemed to cross when his little eyes were tired of doing all the new things they were trying out - when Hayes' eyes crossed it seemed like his preferred M.O. At Hayes' two months check up the doctor asked if he was tracking objects with his eyes, and I said 'yes' without thinking. As I drove home I began to think, He doesn't track objects very often at all, I don't know why I said that.
When I took his two month pictures, I felt like he should have been holding his head up better. I referred back to Knox's pictures and thought Knox seemed tighter, more rigid, whereas Hayes wasn't holding himself up at all.
But if there is anything parents, doctors, friends, strangers off the street, etc. will tell you it is OH MY GOSH NEVER COMPARE SIBLINGS TO EACH OTHER DON'T START DON'T DO IT. So I ignored it. Sort of. Not really.
The fear really took a step up at three months.
Hayes' floppiness seemed to increase, or maybe it was just all the more noticeable as he grew in size and weight, but not in tone. I kept pleading with my inner demons, appeasing them with the thoughts that Hayes would miraculously catch up with other babies and suddenly begin to hold his head up in time for the four month milestone marker that was looming ahead. He'd start to make eye contact and track objects and reach for things and all the rest...
But he didn't. And I began to exist in a state of what I'd call functioning panic. (This is still the Emotional Voice speaking. We'll get to the much calmer Medical Voice in a minute.) A few days before his four month birthday, it suddenly hit me: Hayes wasn't going to hold his head up, he wasn't going to catch up. He was going to miss this milestone and I was a mom who was going to freak out about it. I was going to be the one who insisted something was wrong. And so I brought Koby into my little circus of fear and Googling. (Curse you, Google.)
And so I scheduled Hayes' four months check up with the doctor and began making a list of the concerns I'd be ready with when the "And is there anything you're concerned about at this point in time regarding Hayes' development" question came. Literally, a list. And I hated it so much, this list lying there covered in things Hayes couldn't or wouldn't do, that I started a 'Can Do' list on the back.
When the appointment came I was too embarrassed (and didn't want to mispronounce) the things I had already diagnosed Hayes with courtesy of Google: hypotonia (low muscle tone) and strabismus (crossed eyes), so I just calmly read off the more pressing worries from the list. More important that day was addressing Hayes' RSV, which is a virus that attacks the respiratory system. Our doctor didn't seem concerned about Hayes' inability to hold his head up (even though in my head I'm thinking HYPOTONIA! LOW MUSCLE TONE!) but did refer us to a Pediatric Eye Specialist in Fort Worth to check out his vision. Maybe the doctor didn't want to immediately jump to the most dramatic cause behind Hayes' symptoms, like I had done. For a few days I (and every one else who knew what we were doing at this point) felt better, but then the old demons came creeping up behind me.
It's funny, how we try and talk people out of their feelings. Since yesterday I've marveled at it - I don't think it's wrong, necessarily, I just think it's human. We tell babies "Don't cry, don't be sad," we tell toddlers "You're okay," and we tell ourselves and each other a whole host of things to persuade us apart from our feelings. After the routine check up with our pediatrician, Koby felt calm, but I was worried. And I tried to get him on board with my feelings. I don't think I did it on purpose, I just did it. Since yesterday, I've been the (relatively) calm one, and Koby felt the same disconnect I did - Why can't she just feel the way I'm feeling about this? How can she think these things, look at it this way? I know I often felt like I wanted to shout in peoples' faces "This IS a big deal, I DON'T think it's going to be 'okay'!" I'm left to wonder, do we ever react the way we should? Is there a certain set of feelings we should feel under certain circumstances? Or are those feelings so transient, fickle, and dependent upon such a variety of factors that the only thing that matters is how we handle those feelings? (Parable of the two sons, anyone? We'll get back to that in the Spiritual Voice portion of our program.)
Enter: Medical Voice. Yesterday was our appointment in Fort Worth with the Pediatric Vision Specialists associated with Cook's Children's Health Care System. I was excited and nervous in equal measure. Maybe not equal measure. But more excited than one should be about having to take their infant in to get his vision checked. I was ready to get the ball rolling - ready to considerably fine-tune my Google searches. Ready to begin understanding why my son won't hold his head up well, won't look at things.
I went half hoping that they'd fit him with a pair of baby eye goggles, maybe patch an eye, and we'd see miraculous and immediate improvements. I think at one point I really sort of believed that would happen. But when the doctor diagnosed him with Optic Nerve Hypoplasia, I don't think it shocked me as much as he might have thought it would. Indeed, it's a bombshell, but when the mother has already considered a thousand times there might be something wrong with her son's brain, it isn't the blindsiding force it could be otherwise.
Here is what I can tell you in my own words about ONH from just over 24 hours of research. (Bless you, Google.) Optic Nerve Hypoplasia (ONH) is a abnormality of the nerve that connects the eyes to the brain. This condition occurs when the nerve doesn't form correctly during the first few weeks of pregnancy (meaning it is a congenital defect). There is no known cause, although some prenatal issues could be risk factors. ONH can affect either or both eyes (usually both) and its effects can range from mild vision loss to zero light perception (total blindness). Because it's an issue having to do with the brain and more specifically, the middle section of the brain, other neurological disorders can be present including but not limited to, motor function, developmental delays, hormonal issues, mental retardation, and other things.
This is essentially what the doctor told me, plus or minus a few points. The questions I immediately asked were typical, "Was this a result of brain trauma or as the brain was developing?" (Brain developing, it's not my fault or anything I did or didn't do, yadda yadda) and "Based on what the nerve looks like now, how much will he be able to see? If he doesn't improve from this point onward, will he be legally blind?" (We can't tell at this point, wait and see, yadda yadda.) We're scheduled to have an MRI on April 9 to explore Hayes' brain and see what other, if any, abnormalities or defects are present. Still to be scheduled is an appointment with a pediatric endocrinologist who will assess his hormonal levels to determine if they are functional or abnormal. Based on the doctor's appraisal, his ONH seems to mild and judging by the fact that he is thriving, he may not be suffering any hormonal deficiencies at this time. (Although they may present themselves at any point.)
Here's what I can tell you in my own words about ONH after my son being diagnosed with it about 24 hours ago: I hate it. I wrestle with the thought of "This is unfair for my baby". (Note: these are my Ugly Thoughts, not Koby's. He won't entertain this one with me, and for that I commend him.) I wrestle with jealousy - after all, I work with dozens of children whose brains formed perfectly during the 6th and 12th prenatal weeks. I know you always hear stories of these wonderful people afflicted with all sorts of terrible things who are never once heard to ask "Why me?" and I guess those people are all better than me. To me, it's completely logical to know that no, it's not fair for a baby to have its brain develop incorrectly for apparently no reason whatsoever and thus suffer a range of mild to severe symptoms every day for the rest of his life. It just sounds juvenile and petty to call something unfair. And that makes me incredibly angry on Hayes' behalf. Koby and I haven't even begun to discuss the big, ugly questions like What if Hayes is severely mentally handicapped? What if we have to pay for costly hormonal injections to give him each night to ward off dangerous and life-threatening hormone deficiencies? What if he never gets married because of his condition? We don't even talk about the little things. What if he can never throw a baseball with us? What if he never knows what his brother looks like? What if I can never show him how to write his name?
I won't even get into the guilt of birthing a baby with a congenital brain defect - for all the 'you couldn't have prevented this' comments out there, there will always be the illogical but wholly real nagging feeling in the back of the mind. Illogical, yes; counter-productive, of course; ever-present, indefinitely.
You might think less of me after reading all that, but I'm choosing to err on the belief that I'm allowed some ugly, visceral thoughts because I intend upon acting in the right. Nevertheless, shut up, Ugly Honest Voice.
To my credit or discredit, depending upon whom you ask, I have always tried to think of things from the 'other side'. While part of my brain screams "How on earth is it fair that this baby's brain developed abnormally?", the other, logical and Spiritual Voice tells me "Why not this baby over any other?" My baby, my family, me - we are no better or more protected from these things than any other human on the planet. What right do I hold that grants me a pain-free, hardship-free life? In fact, yesterday I found myself thanking God that I had a car to drive to a Pediatric Vision Specialist less than two miles from my home who could diagnose my child on the spot. I even thanked God for Google, which filled in the gaps left after the five minute conversation I had with the ophthalmologist. And though we have to wait a month for it, I am genuinely grateful I live in a country where I have access to MRI technology, I have insurance that will (hopefully) cover (some of) it, and amazingly, miraculously, wonderfully, I have a loving husband who will be a encouraging, supportive and Christ-like dad to a child with special needs. I have friends and family members who are heroically stepping up to help me with my own special needs during this time. Hayes has a brother who is kind, compassionate, loving, thoughtful and protective of his younger sibling at the age of 20 months old.
And then, I have Hayes. He is my sweet baby. Now that I've been enumerating my worries and fears and 'can'ts' about him, can I please tell you about HIM? He's my happy boy, the patient younger brother who endures Knox's proddings and times of over-helpfulness with a coo and only very occasionally, a quiet cry. He is so strong and beautiful with his reddish blond hair and dark blue eyes that I cannot believe there are things misfiring under his perfect skull. His hair might be curly - if not he's definitely going to suffer chronic bedhead with hair growing in so many directions at once. His one request is to be held at all times, but if you're unable, it's okay. His favorite is lots of kisses on his cheeks and neck. He likes milk at room temperature and has been known to spend ten minutes smiling and laughing instead of drinking. He's big and full of the most delicious baby rolls you could imagine. He deserves the very best.
Koby and I have been filtering through our thoughts and feelings, sorting out which ones will work and which don't. We're still choosing which ones will help us operate our mindset like the good family car, steadily moving us forward one day at a time. I grew up privileged - I never knew what it felt like to be in a family living from paycheck to paycheck. I never saw a family member battle a disease, depleting their strength and living from day to day. I've never thrown myself at God's mercy and known what it was like for His joy to be my strength. I'm sure I thought I did, but this is new. This season of my life is showing me what that means - how the Lord can be my strength. The value of the Daily Bread, the Grace that can carry a person when her strength reserves are depleted. In short, I have never lived day to day in any sense barring the obvious but easily forgettable fragility of my own mortality. But now I am having to learn what it means, spiritually, economically, mentally, and otherwise. ( I am speaking for myself, but I think Koby would echo me here.)
We appreciate and covet your prayers for Hayes, but if I seem vague or overly positive or negative at any time that you might talk to me over the coming days/weeks/years, just know it's because I'm tweaking my mindset. I'll get it right eventually.
I have totally been avoiding you. Somewhere in between this moment:
and this one:
I began to experience the seedlings of fear and apprehension about Hayes and his development, and I didn't want to talk to anyone about it. And since these fears were so linked in my mind with Hayes himself, it was really hard to talk to anyone with the 'new baby' subject off-limits. I withdrew from friends, I haven't blogged. I didn't even share my fears with my husband until I couldn't contain them anymore and bombarded him in the middle of a school day with a torrent of terrified text messages.
While deciding how to write this post, I hesitated upon an approach: Ugly and honest? Purely medical jargon? Spiritual? Optimistic? We're going with a mix... all of the above. For the past twenty-four hours I feel like Koby and I have been choosing a mindset (because that is the singular beautiful thing in one's own control) as if a couple might shop around for a new car - considering all the angles, for a new car can either bring a family comfort or stress; it will keep them moving against all odds or leave its passengers broken down in unfamiliar territory.
Back to my fear seedlings, their origin. This voice is the dramatic, emotions-based voice: I was afraid there was something we'd be discovering about Hayes from the moment I held him for the first time. Perhaps it was the residual feelings of paranoia remembered from his first in-depth ultrasound when the doctors found choroid plexus cysts. Maybe it was a mother's intuition, but it probably wasn't. Maybe it was pure pessimism. But in any case, instead of the peace and fulfillment I thought I'd feel holding him for the first time, I felt panic. Koby left the room to get me food and I frantically began searching every inch of Hayes, looking for the something that was making me feel this way. I never told Koby about this moment of terror I had (until recently) because I was embarrassed - who acts like that in the first moments of her son's life?
But Koby came back and I smiled, we left the hospital. Hayes grew, and the feelings went away for the most part.
Until he turned about two months old. Hayes was doing a few things that concerned me - his eyes were crossing more than I remembered Knox's ever doing, and seemed to be crossing differently to me. Knox's seemed to cross when his little eyes were tired of doing all the new things they were trying out - when Hayes' eyes crossed it seemed like his preferred M.O. At Hayes' two months check up the doctor asked if he was tracking objects with his eyes, and I said 'yes' without thinking. As I drove home I began to think, He doesn't track objects very often at all, I don't know why I said that.
When I took his two month pictures, I felt like he should have been holding his head up better. I referred back to Knox's pictures and thought Knox seemed tighter, more rigid, whereas Hayes wasn't holding himself up at all.
But if there is anything parents, doctors, friends, strangers off the street, etc. will tell you it is OH MY GOSH NEVER COMPARE SIBLINGS TO EACH OTHER DON'T START DON'T DO IT. So I ignored it. Sort of. Not really.
The fear really took a step up at three months.
Hayes' floppiness seemed to increase, or maybe it was just all the more noticeable as he grew in size and weight, but not in tone. I kept pleading with my inner demons, appeasing them with the thoughts that Hayes would miraculously catch up with other babies and suddenly begin to hold his head up in time for the four month milestone marker that was looming ahead. He'd start to make eye contact and track objects and reach for things and all the rest...
But he didn't. And I began to exist in a state of what I'd call functioning panic. (This is still the Emotional Voice speaking. We'll get to the much calmer Medical Voice in a minute.) A few days before his four month birthday, it suddenly hit me: Hayes wasn't going to hold his head up, he wasn't going to catch up. He was going to miss this milestone and I was a mom who was going to freak out about it. I was going to be the one who insisted something was wrong. And so I brought Koby into my little circus of fear and Googling. (Curse you, Google.)
And so I scheduled Hayes' four months check up with the doctor and began making a list of the concerns I'd be ready with when the "And is there anything you're concerned about at this point in time regarding Hayes' development" question came. Literally, a list. And I hated it so much, this list lying there covered in things Hayes couldn't or wouldn't do, that I started a 'Can Do' list on the back.
When the appointment came I was too embarrassed (and didn't want to mispronounce) the things I had already diagnosed Hayes with courtesy of Google: hypotonia (low muscle tone) and strabismus (crossed eyes), so I just calmly read off the more pressing worries from the list. More important that day was addressing Hayes' RSV, which is a virus that attacks the respiratory system. Our doctor didn't seem concerned about Hayes' inability to hold his head up (even though in my head I'm thinking HYPOTONIA! LOW MUSCLE TONE!) but did refer us to a Pediatric Eye Specialist in Fort Worth to check out his vision. Maybe the doctor didn't want to immediately jump to the most dramatic cause behind Hayes' symptoms, like I had done. For a few days I (and every one else who knew what we were doing at this point) felt better, but then the old demons came creeping up behind me.
It's funny, how we try and talk people out of their feelings. Since yesterday I've marveled at it - I don't think it's wrong, necessarily, I just think it's human. We tell babies "Don't cry, don't be sad," we tell toddlers "You're okay," and we tell ourselves and each other a whole host of things to persuade us apart from our feelings. After the routine check up with our pediatrician, Koby felt calm, but I was worried. And I tried to get him on board with my feelings. I don't think I did it on purpose, I just did it. Since yesterday, I've been the (relatively) calm one, and Koby felt the same disconnect I did - Why can't she just feel the way I'm feeling about this? How can she think these things, look at it this way? I know I often felt like I wanted to shout in peoples' faces "This IS a big deal, I DON'T think it's going to be 'okay'!" I'm left to wonder, do we ever react the way we should? Is there a certain set of feelings we should feel under certain circumstances? Or are those feelings so transient, fickle, and dependent upon such a variety of factors that the only thing that matters is how we handle those feelings? (Parable of the two sons, anyone? We'll get back to that in the Spiritual Voice portion of our program.)
Enter: Medical Voice. Yesterday was our appointment in Fort Worth with the Pediatric Vision Specialists associated with Cook's Children's Health Care System. I was excited and nervous in equal measure. Maybe not equal measure. But more excited than one should be about having to take their infant in to get his vision checked. I was ready to get the ball rolling - ready to considerably fine-tune my Google searches. Ready to begin understanding why my son won't hold his head up well, won't look at things.
I went half hoping that they'd fit him with a pair of baby eye goggles, maybe patch an eye, and we'd see miraculous and immediate improvements. I think at one point I really sort of believed that would happen. But when the doctor diagnosed him with Optic Nerve Hypoplasia, I don't think it shocked me as much as he might have thought it would. Indeed, it's a bombshell, but when the mother has already considered a thousand times there might be something wrong with her son's brain, it isn't the blindsiding force it could be otherwise.
Here is what I can tell you in my own words about ONH from just over 24 hours of research. (Bless you, Google.) Optic Nerve Hypoplasia (ONH) is a abnormality of the nerve that connects the eyes to the brain. This condition occurs when the nerve doesn't form correctly during the first few weeks of pregnancy (meaning it is a congenital defect). There is no known cause, although some prenatal issues could be risk factors. ONH can affect either or both eyes (usually both) and its effects can range from mild vision loss to zero light perception (total blindness). Because it's an issue having to do with the brain and more specifically, the middle section of the brain, other neurological disorders can be present including but not limited to, motor function, developmental delays, hormonal issues, mental retardation, and other things.
This is essentially what the doctor told me, plus or minus a few points. The questions I immediately asked were typical, "Was this a result of brain trauma or as the brain was developing?" (Brain developing, it's not my fault or anything I did or didn't do, yadda yadda) and "Based on what the nerve looks like now, how much will he be able to see? If he doesn't improve from this point onward, will he be legally blind?" (We can't tell at this point, wait and see, yadda yadda.) We're scheduled to have an MRI on April 9 to explore Hayes' brain and see what other, if any, abnormalities or defects are present. Still to be scheduled is an appointment with a pediatric endocrinologist who will assess his hormonal levels to determine if they are functional or abnormal. Based on the doctor's appraisal, his ONH seems to mild and judging by the fact that he is thriving, he may not be suffering any hormonal deficiencies at this time. (Although they may present themselves at any point.)
Here's what I can tell you in my own words about ONH after my son being diagnosed with it about 24 hours ago: I hate it. I wrestle with the thought of "This is unfair for my baby". (Note: these are my Ugly Thoughts, not Koby's. He won't entertain this one with me, and for that I commend him.) I wrestle with jealousy - after all, I work with dozens of children whose brains formed perfectly during the 6th and 12th prenatal weeks. I know you always hear stories of these wonderful people afflicted with all sorts of terrible things who are never once heard to ask "Why me?" and I guess those people are all better than me. To me, it's completely logical to know that no, it's not fair for a baby to have its brain develop incorrectly for apparently no reason whatsoever and thus suffer a range of mild to severe symptoms every day for the rest of his life. It just sounds juvenile and petty to call something unfair. And that makes me incredibly angry on Hayes' behalf. Koby and I haven't even begun to discuss the big, ugly questions like What if Hayes is severely mentally handicapped? What if we have to pay for costly hormonal injections to give him each night to ward off dangerous and life-threatening hormone deficiencies? What if he never gets married because of his condition? We don't even talk about the little things. What if he can never throw a baseball with us? What if he never knows what his brother looks like? What if I can never show him how to write his name?
I won't even get into the guilt of birthing a baby with a congenital brain defect - for all the 'you couldn't have prevented this' comments out there, there will always be the illogical but wholly real nagging feeling in the back of the mind. Illogical, yes; counter-productive, of course; ever-present, indefinitely.
You might think less of me after reading all that, but I'm choosing to err on the belief that I'm allowed some ugly, visceral thoughts because I intend upon acting in the right. Nevertheless, shut up, Ugly Honest Voice.
To my credit or discredit, depending upon whom you ask, I have always tried to think of things from the 'other side'. While part of my brain screams "How on earth is it fair that this baby's brain developed abnormally?", the other, logical and Spiritual Voice tells me "Why not this baby over any other?" My baby, my family, me - we are no better or more protected from these things than any other human on the planet. What right do I hold that grants me a pain-free, hardship-free life? In fact, yesterday I found myself thanking God that I had a car to drive to a Pediatric Vision Specialist less than two miles from my home who could diagnose my child on the spot. I even thanked God for Google, which filled in the gaps left after the five minute conversation I had with the ophthalmologist. And though we have to wait a month for it, I am genuinely grateful I live in a country where I have access to MRI technology, I have insurance that will (hopefully) cover (some of) it, and amazingly, miraculously, wonderfully, I have a loving husband who will be a encouraging, supportive and Christ-like dad to a child with special needs. I have friends and family members who are heroically stepping up to help me with my own special needs during this time. Hayes has a brother who is kind, compassionate, loving, thoughtful and protective of his younger sibling at the age of 20 months old.
And then, I have Hayes. He is my sweet baby. Now that I've been enumerating my worries and fears and 'can'ts' about him, can I please tell you about HIM? He's my happy boy, the patient younger brother who endures Knox's proddings and times of over-helpfulness with a coo and only very occasionally, a quiet cry. He is so strong and beautiful with his reddish blond hair and dark blue eyes that I cannot believe there are things misfiring under his perfect skull. His hair might be curly - if not he's definitely going to suffer chronic bedhead with hair growing in so many directions at once. His one request is to be held at all times, but if you're unable, it's okay. His favorite is lots of kisses on his cheeks and neck. He likes milk at room temperature and has been known to spend ten minutes smiling and laughing instead of drinking. He's big and full of the most delicious baby rolls you could imagine. He deserves the very best.
Koby and I have been filtering through our thoughts and feelings, sorting out which ones will work and which don't. We're still choosing which ones will help us operate our mindset like the good family car, steadily moving us forward one day at a time. I grew up privileged - I never knew what it felt like to be in a family living from paycheck to paycheck. I never saw a family member battle a disease, depleting their strength and living from day to day. I've never thrown myself at God's mercy and known what it was like for His joy to be my strength. I'm sure I thought I did, but this is new. This season of my life is showing me what that means - how the Lord can be my strength. The value of the Daily Bread, the Grace that can carry a person when her strength reserves are depleted. In short, I have never lived day to day in any sense barring the obvious but easily forgettable fragility of my own mortality. But now I am having to learn what it means, spiritually, economically, mentally, and otherwise. ( I am speaking for myself, but I think Koby would echo me here.)
We appreciate and covet your prayers for Hayes, but if I seem vague or overly positive or negative at any time that you might talk to me over the coming days/weeks/years, just know it's because I'm tweaking my mindset. I'll get it right eventually.
Friday, December 21, 2012
Real Thoughts
Here is why it is amazing to be a Christian:
God's way is best.
He is the ultimate Designer, Planner. His ways are so much higher than our ways.
I set out this holiday season to bless others and found that in the blessing I received something equal, or even greater than whatever I was trying to give.
My friend Sarah emailed me a few weeks ago with an invitation to do Blessingmas 2012 with her, and I decided to accept. I baked for some of our neighbors, but before I could even walk the goodies over (slight malfunction with the oven... alright, I got sucked into YouTube sitcom bloopers and burned a batch of cookies), my neighbors blessed me.
On Wednesday, Knox dug a half-eaten Snickers out of the bottom of a Christmas gift bag and took a bite. This is significant because my son is allergic to peanuts. Diligent though I have been to ban peanuts from entering my home or car, though I have been a new paranoid monster mommy at church potlucks and childrens' birthday parties, I forgot about the candy from our office gift exchange and forgot to pick it up or throw it away before Knox got home. (I'll probably still be guilt-ridden, talking about this incident in therapy, years on down the road.)
Since Knox was diagnosed with a peanut allergy, it's like we've been waiting for that moment. And there it was. My head said "This is it" and I sort of started to panic. I'm probably making it sound a lot more dramatic than it was. Knox's body's reaction probably hovers somewhere in between 'mild' and 'severe' at this point in time, and definitely nowhere near 'life-threatening'. (Though in some cases reactions progress with each exposure, which is why if we could afford it and they didn't have a shelf life of about two seconds I would buy Epi-pens and give them to every person Knox might ever meet.) Still, we called 911 at the outset because we weren't sure what we'd be dealing with.
Koby (thankfully and reassuringly infinitely calmer than I was in this situation) stood in the front yard holding a blotchy-faced and confused Knox, I was on the phone with the 911-receptionist and running in and out of the house, wielding an Epi-pen like it was the antidote in The Temple of Doom, our dogs raced up and down the fence line, sensing our anxiety and barking their heads off, and Hayes screamed on the couch, his dinner having been interrupted by our mini-crisis. It felt like a spanning of generations, but it all took place in the space of less than two minutes.
And from down the road strolled our elderly neighbor. She calmly walked through our gate and asked if she could help with the baby. Covered in peanut-puke, I gave her Hayes and his bottle and dazedly asked her how she knew we needed help.
"I heard your address on the scanner and came over to see if I could help with one of the babies."
Sometimes it's uncomfortable to help other people - we don't want to get in the way, we don't want to intrude, we don't even know the person needing help, or sometimes we just don't even think of helping at all. I'm saying 'we' - I mean 'I'. But I am so glad our neighbor wasn't hindered as I have been, by pride or fear. She immediately saw a need, she walked over to our house and she sat on our couch and she gave Hayes the rest of his bottle. And the inside of my house became as peaceful as it could have been in those moments.
Suddenly, the cookies I'd dropped on the counter when I heard Koby say "Why does Knox have a Snickers?" seemed like a really small and insignificant thing to give a neighbor.
I wrote a lot more in their card than I probably would have if I had not burned the cookies and been able to deliver them on Tuesday, like planned. I set out to bless my neighbors with refined sugar, but before I got the chance, my neighbors showed me "love thy neighbor". And I am thankful that this is the way my God teaches me to be, and that my family has been blessed because of it.
I also (with a little bit of Pinspiration - not sure I have an original thought left in me) concocted a plan to bless Koby by doing an actual Twelve Days of Christmas. But with more Sour Patch Kids and less exotic fowl.
... it's been harder than I thought.
And not because I had to come up with 78 gifts with which to present him, though admittedly that was hard-bordering-on-impossible.
It's been hard because we're married, and things come up. The logistics have been a nightmare. Factor in sick kids, emergency 911 calls, long days at work, out of town basketball games, early morning practices, traveling for family, new babies and sleepless nights. And then remember that we are indeed married, and some days I don't really feel like giving him small, thoughtful gifts. Some days I don't want to give him small, thoughtful gifts so much as throw them at his head. (Full disclosure, no shame.)
But, I am a stubborn person and in those moments I told myself, "I've committed to this, and I will finish it." And each day (tomorrow is day nine), regardless of whether I felt like giving him his gift at the outset, I've gone to bed glad that I did. Each day, through the act of giving God blessed me with a feeling of peace that I might have been lacking before. And each day Koby gracefully and gratefully accepted my gifts, even if I had been a raging butt-face a few hours beforehand. (Full disclosure, no shame.)
I hope you can see the metaphor for marriage here without me cheesing out totally and writing it.
This Christmas I have felt more of the spirit of the holidays than ever before - both the secular (how fun is it to actually wrap toys for your own kids at Christmas?!) and the spiritual. Even in the midst of a broken world in a time when it literally sickens me to hear the news, I see that neighbors still help each other and I can reflect on the love of my family each night before I go to bed, and so I feel and see glimpses of God's Kingdom here on Earth. I hope you see them too.
Because it feels good.
God's way is best.
He is the ultimate Designer, Planner. His ways are so much higher than our ways.
I set out this holiday season to bless others and found that in the blessing I received something equal, or even greater than whatever I was trying to give.
My friend Sarah emailed me a few weeks ago with an invitation to do Blessingmas 2012 with her, and I decided to accept. I baked for some of our neighbors, but before I could even walk the goodies over (slight malfunction with the oven... alright, I got sucked into YouTube sitcom bloopers and burned a batch of cookies), my neighbors blessed me.
On Wednesday, Knox dug a half-eaten Snickers out of the bottom of a Christmas gift bag and took a bite. This is significant because my son is allergic to peanuts. Diligent though I have been to ban peanuts from entering my home or car, though I have been a new paranoid monster mommy at church potlucks and childrens' birthday parties, I forgot about the candy from our office gift exchange and forgot to pick it up or throw it away before Knox got home. (I'll probably still be guilt-ridden, talking about this incident in therapy, years on down the road.)
Since Knox was diagnosed with a peanut allergy, it's like we've been waiting for that moment. And there it was. My head said "This is it" and I sort of started to panic. I'm probably making it sound a lot more dramatic than it was. Knox's body's reaction probably hovers somewhere in between 'mild' and 'severe' at this point in time, and definitely nowhere near 'life-threatening'. (Though in some cases reactions progress with each exposure, which is why if we could afford it and they didn't have a shelf life of about two seconds I would buy Epi-pens and give them to every person Knox might ever meet.) Still, we called 911 at the outset because we weren't sure what we'd be dealing with.
Koby (thankfully and reassuringly infinitely calmer than I was in this situation) stood in the front yard holding a blotchy-faced and confused Knox, I was on the phone with the 911-receptionist and running in and out of the house, wielding an Epi-pen like it was the antidote in The Temple of Doom, our dogs raced up and down the fence line, sensing our anxiety and barking their heads off, and Hayes screamed on the couch, his dinner having been interrupted by our mini-crisis. It felt like a spanning of generations, but it all took place in the space of less than two minutes.
And from down the road strolled our elderly neighbor. She calmly walked through our gate and asked if she could help with the baby. Covered in peanut-puke, I gave her Hayes and his bottle and dazedly asked her how she knew we needed help.
"I heard your address on the scanner and came over to see if I could help with one of the babies."
Sometimes it's uncomfortable to help other people - we don't want to get in the way, we don't want to intrude, we don't even know the person needing help, or sometimes we just don't even think of helping at all. I'm saying 'we' - I mean 'I'. But I am so glad our neighbor wasn't hindered as I have been, by pride or fear. She immediately saw a need, she walked over to our house and she sat on our couch and she gave Hayes the rest of his bottle. And the inside of my house became as peaceful as it could have been in those moments.
Suddenly, the cookies I'd dropped on the counter when I heard Koby say "Why does Knox have a Snickers?" seemed like a really small and insignificant thing to give a neighbor.
I wrote a lot more in their card than I probably would have if I had not burned the cookies and been able to deliver them on Tuesday, like planned. I set out to bless my neighbors with refined sugar, but before I got the chance, my neighbors showed me "love thy neighbor". And I am thankful that this is the way my God teaches me to be, and that my family has been blessed because of it.
I also (with a little bit of Pinspiration - not sure I have an original thought left in me) concocted a plan to bless Koby by doing an actual Twelve Days of Christmas. But with more Sour Patch Kids and less exotic fowl.
... it's been harder than I thought.
And not because I had to come up with 78 gifts with which to present him, though admittedly that was hard-bordering-on-impossible.
It's been hard because we're married, and things come up. The logistics have been a nightmare. Factor in sick kids, emergency 911 calls, long days at work, out of town basketball games, early morning practices, traveling for family, new babies and sleepless nights. And then remember that we are indeed married, and some days I don't really feel like giving him small, thoughtful gifts. Some days I don't want to give him small, thoughtful gifts so much as throw them at his head. (Full disclosure, no shame.)
But, I am a stubborn person and in those moments I told myself, "I've committed to this, and I will finish it." And each day (tomorrow is day nine), regardless of whether I felt like giving him his gift at the outset, I've gone to bed glad that I did. Each day, through the act of giving God blessed me with a feeling of peace that I might have been lacking before. And each day Koby gracefully and gratefully accepted my gifts, even if I had been a raging butt-face a few hours beforehand. (Full disclosure, no shame.)
I hope you can see the metaphor for marriage here without me cheesing out totally and writing it.
This Christmas I have felt more of the spirit of the holidays than ever before - both the secular (how fun is it to actually wrap toys for your own kids at Christmas?!) and the spiritual. Even in the midst of a broken world in a time when it literally sickens me to hear the news, I see that neighbors still help each other and I can reflect on the love of my family each night before I go to bed, and so I feel and see glimpses of God's Kingdom here on Earth. I hope you see them too.
Because it feels good.
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