As all of the doctors visits increase, and the specialists multiply like laundry when you think you're all caught up... I just can't help but feel like I'm drowning. I'm helpless to stop my baby boy from hurting. I can't kiss these "owies" better, I can't love them away. It's such a horrible feeling to have my hands tied behind my back as my son's heart over works itself, and as he struggles to function daily with his speech and motor skills. We're doing all we can do by taking him to the many doctors and therapists, and yet I feel I have no foot hold. I have no way out, and some times I just want to hang my head and cry in despair. Through all of the diagnosises, we have continually been told that he was just born this way. Every thing he faces is congenital. Of course, as his mom, the lady that "grew" him, I feel personally responsible for any issues that arise. I've blamed myself for everything from a cowlick to an overworked heart, and it's absolutely exhausting.
I have fought my entire life to realize that everything DOES happen for a reason-- even the nasty, foul experience that seems to have no possible good for anyone has absolutely been justified to me as necessary, whether for me or for someone else; so in my own life, I no longer question negative experiences and ask, "why God?" When I felt the weight of my son in my arms for the first time, though, all bets were off. Suddenly, I wanted an absolutely perfect life for this small sized human being, and any down sides were NOT good, they were terrible, horrible, awful things that couldn't possibly be anything but unfair, and also my responsibility to fix.
I struggle with these feelings daily, hourly, minute by minute. I don't dwell on them or let them over run my life, but they are always there. That little feeling never eases. And just when I begin to feel absolutely hopeless and let the tears fall, I feel the nudging of a still, small voice beyond my cry of despair. "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. " (Psalm 139: 13-16, NIV)
What a concept. My baby is a precise creation. This small person is not "broken," but a hand-crafted gift to me, and to the world around him, despite and perhaps because of his issues. Even though I freely admit, I don't see God's hand in this experience, I know it's there. I know that some day, it will all make sense. There is not a single beat of my child's heart that goes unnoticed by God, so who am I to feel like a failure? Keagan does not have a single problem that was an accident or a mistake. All of the things we are walking through are not my fault, because there's nothing happening that is wrong. From the very first cell that grew into the big tall two-year old that loves trains, trucks, planes, books, bubbles, and pigs, there is a specific blueprint being followed for him, and I'm just along for the ride. I love him with a deep and unfathomable love, and what I feel for him is only a fraction of what our big God feels for him. Beyond reason, I know that none of this is an accident. I have fear, because I'm human, and I want to be in control, but I know that Someone who can see the bigger picture is in control, and that's the most reassuring thought of all.
So as my knees shake, as my heart aches, as tears do fall from my eyes sometimes, I stand firm on the promise that God doesn't make mistakes, and that as much as I want good for Keagan's life, God wants infinitely more for him than I can comprehend.
Wednesday, February 16, 2011
Tuesday, February 15, 2011
hearts and spines and brains, oh my!
broken heartsville:
I can't remember if I had mentioned before here that Keagan, as a side note, was diagnosed with a heart murmur. In the chaos of diagnosis, that was such a non-issue that frankly I forgot about it for a while. When we got to Bragg, I mentioned it to his pediatrician and she re-issued our referral for cardiology. We went in last month, and were told that he did have a heart murmur, but it was probably nothing. They sent us to Duke Cardiology for one more test, because the machine they had at Womack wasn't designed for pediatrics and couldn't give a clear enough picture-- they weren't able to clearly see one of his aortic valves (but again I was anything but worried, because they told me when I was pregnant that he might be missing a kidney-- he's not, the Army just needs better equipment) and wanted to just be sure.
When we went in last week, we saw the same cardiologist (to anyone out here who needs a pediatric cardiologist, Dr. Miller is absolutely wonderful) as before. He remembered us, and off we went to have an electrocardiograph done on Keagan's heart. As the stenographer began the test, she suddenly got up and left. When Dr. Miller came back, they exchanged a few words and he turned to me and said, "I'm so glad you're here." Uh... alright? Cue a little knot of worry in my stomach.
After the test was completed, we went into Dr. Miller's office and he began to draw me some pictures. What he told me was that while he is actually missing a valve in his aorta (the condition is called a bicuspid valve), that was the least of our concerns. He has a narrowing in the main part of his aorta, called an aortic coarctation, that was fairly severe and would require surgery. As a by-product of the coarctation, he had some hypertrophy in his left ventricle (hardening of the heart tissue that can cause heart failure if left unchecked). He told me that his heart was working entirely too hard to pump his blood through the narrow portion of his aorta, and while it wouldn't become an emergency in the next 6 months, after that, there was no telling if he would experience some form or another of heart failure.
The plan currently is to have him go in for a cardiac MRI to get an even better picture of his heart and be able to form a 3-D picture/ surgical game plan for his 6-man pediatric surgery team. We will find out when his MRI is within a week or so, and then surgery should be scheduled a few weeks after that.
Chiari update:
I don't have much to update except that he seems to be showing signs of progression. He woke up almost 2 weeks ago with noticeably altered speech that has not yet improved all the way (or possibly at all, but I work extra hard to understand him, since few people can, so I'm used to his speech). The best explanation I can give is that before this, he could clearly say "fish," and now he says "fffffffffff."
We got hooked up with the Early Intervention specialists, who will be providing us with speech and physical therapy to help him learn to overcome his disadvantages due to his progression (they'll be working with him on his speech and balance better than I can on my own). They are going to start working with him Thursday morning, so we'll know how major his delays actually are by then.
His spine issue is just due to my increasing knowledge of his CM issues. There is a risk, with a CM, of cerebrospinal fluid building up in pockets in his spine, called syrinxes (I think?). From my understanding, it can cause nerve damage and extreme pain-- I don't think he has any, but what do I know? We are scheduling a follow up brain scan and spinal MRI this week as well.
Life is moving fast for us now, and I'm extremely emotional and overwhelmed, but I definitely feel we are in the right place for him to get the best treatment possible for his conditions, numerous as they may seem. I hope all of this will be a distant memory some day, and I'll be able to cheer my son on as he does whatever he chooses to do in life, with no consideration for the limitations imposed by his CM.
I can't remember if I had mentioned before here that Keagan, as a side note, was diagnosed with a heart murmur. In the chaos of diagnosis, that was such a non-issue that frankly I forgot about it for a while. When we got to Bragg, I mentioned it to his pediatrician and she re-issued our referral for cardiology. We went in last month, and were told that he did have a heart murmur, but it was probably nothing. They sent us to Duke Cardiology for one more test, because the machine they had at Womack wasn't designed for pediatrics and couldn't give a clear enough picture-- they weren't able to clearly see one of his aortic valves (but again I was anything but worried, because they told me when I was pregnant that he might be missing a kidney-- he's not, the Army just needs better equipment) and wanted to just be sure.
When we went in last week, we saw the same cardiologist (to anyone out here who needs a pediatric cardiologist, Dr. Miller is absolutely wonderful) as before. He remembered us, and off we went to have an electrocardiograph done on Keagan's heart. As the stenographer began the test, she suddenly got up and left. When Dr. Miller came back, they exchanged a few words and he turned to me and said, "I'm so glad you're here." Uh... alright? Cue a little knot of worry in my stomach.
After the test was completed, we went into Dr. Miller's office and he began to draw me some pictures. What he told me was that while he is actually missing a valve in his aorta (the condition is called a bicuspid valve), that was the least of our concerns. He has a narrowing in the main part of his aorta, called an aortic coarctation, that was fairly severe and would require surgery. As a by-product of the coarctation, he had some hypertrophy in his left ventricle (hardening of the heart tissue that can cause heart failure if left unchecked). He told me that his heart was working entirely too hard to pump his blood through the narrow portion of his aorta, and while it wouldn't become an emergency in the next 6 months, after that, there was no telling if he would experience some form or another of heart failure.
The plan currently is to have him go in for a cardiac MRI to get an even better picture of his heart and be able to form a 3-D picture/ surgical game plan for his 6-man pediatric surgery team. We will find out when his MRI is within a week or so, and then surgery should be scheduled a few weeks after that.
Chiari update:
I don't have much to update except that he seems to be showing signs of progression. He woke up almost 2 weeks ago with noticeably altered speech that has not yet improved all the way (or possibly at all, but I work extra hard to understand him, since few people can, so I'm used to his speech). The best explanation I can give is that before this, he could clearly say "fish," and now he says "fffffffffff."
We got hooked up with the Early Intervention specialists, who will be providing us with speech and physical therapy to help him learn to overcome his disadvantages due to his progression (they'll be working with him on his speech and balance better than I can on my own). They are going to start working with him Thursday morning, so we'll know how major his delays actually are by then.
His spine issue is just due to my increasing knowledge of his CM issues. There is a risk, with a CM, of cerebrospinal fluid building up in pockets in his spine, called syrinxes (I think?). From my understanding, it can cause nerve damage and extreme pain-- I don't think he has any, but what do I know? We are scheduling a follow up brain scan and spinal MRI this week as well.
Life is moving fast for us now, and I'm extremely emotional and overwhelmed, but I definitely feel we are in the right place for him to get the best treatment possible for his conditions, numerous as they may seem. I hope all of this will be a distant memory some day, and I'll be able to cheer my son on as he does whatever he chooses to do in life, with no consideration for the limitations imposed by his CM.
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