Monday, August 1, 2011

If On This Path...

It’s been a crazy summer.  I’ve thought many times that I need to update this blog, but then I’ve gotten busy and haven’t taken the time.  I feel compelled now to write this, if for no other reason than to start a journal for the new journey we’re just beginning – one we didn’t ask for. 

A few short weeks ago, I had no real concerns about my children’s health.  Other than the occasional bump, bruise, and a few thousand dollars’ worth of braces, we really have been lucky in that area.  Of course, Heather has had a couple of fractures, but that’s to be expected when you jump out of swings and tumble out of moving go-carts, but it’s been nothing that a few weeks in a cast couldn’t handle.  And then Jacob has had the heart murmur since birth, but it’s not been a cause for alarm and he has no restrictions because of it.  We just visit the pediatric cardiologist on a regular basis and keep a check on it.

Then, we signed Jacob up for camp.  A quick routine physical (to complete the camp form) at the pediatrician’s office has triggered what might be an endless cycle of tests and doctor visits.  The nurse practitioner picked up on the fact that his back didn’t look even.  Although you can’t tell from looking at him that his spine is not straight, you can visibly see that the right side of his back is higher than the left when he bends over.  We were referred to an orthopedist for evaluation.

A couple of weeks later, I took Jacob to the orthopedist that the pediatrician’s office recommended.  Before we saw Dr. Talbert, Jacob was taken for an x-ray.  I stood with the technician behind the wall and saw the image appear on the screen immediately after the x-ray was taken.  It amazed me to see a curve in his spine – one that I had looked for after the nurse practitioner made her recommendation to have Jacob checked for scoliosis – but it was only visible with the x-ray.  A short while later, Dr. Talbert visited with us and confirmed that Jacob had scoliosis.  His x-ray showed a 14 degree “C” curve.  He examined him again and commented that it was remarkable that the nurse practitioner saw it when she did the physical, and that even he couldn’t see the curvature in the spine by looking at his back. 

Then, Dr. Talbert asked me a strange question.  “Why are you here?  I don’t treat children.”

Of course he didn’t.  My pediatrician’s office had bungled quite a few things since we’d been seeing them in the past year, and the fact that they’d referred us to an orthopedist that didn’t treat children shouldn’t have surprised me.  I laughed and told Dr. Talbert why I was there, and I asked him what I should do now.  He told me if Jacob were his son, he would take him to see Dr. Killian, and he would take him sooner rather than later.  In fact, he ended up having his nurse call for us an appointment so we’d get in faster to see Dr. Killian.  She returned with the appointment for the following week written down, and handed me a CD with Jacob’s x-rays on it.  Really, Dr. Talbert was such a gentle and patient doctor that I hated that he couldn’t treat Jacob – I will keep him in mind if I ever need an orthopedist for myself. 

Before the visit with Dr. Killian, I had secretly been hoping he’d tell us it was all a big mistake and that Jacob was healthy and didn’t have scoliosis.  I’d had a hard time praying that, though, because I know that there are so many children with such worse things wrong with them.  I have always felt so blessed that my children were in good health, and I have known kids that have been seriously ill.  I know one child whose scoliosis has caused her great pain and resulted in several surgeries.  I certainly didn’t want that for my child, but I felt guilty knowing that other children are obviously sicker.  Why should my children be spared?  It’s similar to the time that my sister-in-law lost her unborn child while I was pregnant with Jacob.  We both got pregnant within a week of each other, and had been comparing notes during the early part of our pregnancies.  Then, without any warning, she found out that her baby had stopped developing and simply died at around 14 weeks.  My heart broke for her and her husband.  I couldn’t imagine suffering such a loss, and not knowing why.  I still have trouble today even understanding why something like that happened to her and why I was allowed to continue a perfectly healthy pregnancy (save for a little iron deficiency) and give birth to an 8 pound 7 ounce bouncing baby boy.  I spent most of the rest of my pregnancy wondering why, when I considered her to be a much better person than myself (I’m not sure why I’m always so hard on myself), that she had to endure the loss of an innocent child while I was blessed with a beautiful boy.  She has been in my life since I was a young teenager, and being a couple of years older than me, she was one of the role models I always aspired to be like.  She was funny, talented, attractive, and had lots of friends.  She was a “good” girl in the sense that she lived her Christian witness daily, and I knew nothing “bad” or immoral about her.  But yet, she suffered a tragic loss while I was spared that pain.  What an imperfect and unfair world.  So why should my child be spared something like scoliosis?  Deep inside I didn’t want that for him, but I felt guilty praying it.  I knew scoliosis could be managed and a 14 degree curve was mild.  I knew we might be looking at a brace (Dr. Talbert had mentioned that) so I half-heartedly went to see Dr. Killian with the thought that we’d come out with a brace.

Dr. Killian’s waiting area was full.  I was humbled to see some of the children in there.  My child’s condition was nowhere near as severe as some of them, and I had so much to be thankful for.  I silently thanked God for the health he had blessed us with.

I wasn’t really prepared for what Dr. Killian had to say, though.  After reviewing the x-rays we’d brought with us and examining Jacob and his medical history I’d written down, he mentioned the possibility of the 19 degree (more than we thought) curve being caused by spinal dysraphism – a term that covered several different types of birth defects that might require a visit with a neurosurgeon.  Jacob’s VSD heart murmur is associated with spinal dysraphism in 50% of children who have both the heart murmur and a spinal curvature, so he felt it was wise to do an MRI before we begin treatment on the scoliosis to see if surgery might help.  I’ll be honest, I kind of phased out at that point.  I saw Dr. Killian’s mouth moving and heard sounds, but I couldn’t understand much past the word “neurosurgeon.”  Thankfully, he gave us some literature to take home that explained everything he had said, and I’ve been able to read through it and study it.  Hopefully after the MRI comes back normal (my new prayer),  we can say “he JUST has scoliosis” and begin regular check-ups and treatment when needed. 

Throughout the past few weeks, my friend Jane’s philosophy keeps coming to mind.  When Jane was going through treatment for breast cancer several years ago, she once said to me, “I don’t ask God ‘why me?’ anymore.  I’ve realized that without this disease, I wouldn’t be able to minister to so many of the people I’ve met through this.  I wouldn’t have met them any other way.  But since God has allowed me to walk this path, I am going to concentrate on giving Him the glory while I’m here.  I don’t want this disease, but it must be in God’s will for my life or else I wouldn’t have it.  This must be God’s plan for me now so I’ll trust Him and do what I can for Him while I’m here.”

After a few days of avoiding the subject Jacob’s of scoliosis and possible neurosurgery even with myself, and avoiding getting on my knees and truly praying for God’s will, I am finally to the point where I understand Jane’s philosophy even more so.  I think it’s normal for me to fight this in my head for a bit, because no mother wants to watch her child suffer through anything.

Although I would never choose this path for my son, I will embrace it if it is God’s will for our lives.  Whether we are on a 6-month schedule for regular x-rays and therapy for plain old scoliosis, or we take another slight turn in the road and visit with a neurosurgeon and discuss the possibility of surgery, I will give God the glory and use the opportunities He gives me to be a witness.  I am sure this journey will be tough, because I’ll be watching my child suffer from something we can’t control.  But perhaps through this I can teach him how to rely on God even more, and how to use the opportunities God gives us each day as a ministry.  Perhaps there is a doctor, or a nurse, or another young patient out there who needs to see how we react to this.  Whatever the reason, I am committed to trusting God fully in this.  There is a reason we are on this path.

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