By the time we had a diagnosis, Emma’s curves were already at the point where surgery is recommended.
I was in utter shock when the orthopedic doctor handed me her x-rays. Why was there a snake arching across my daughter’s back?
That was my first thought — a snake had somehow found its way onto my daughter’s x-rays. Ridiculous. But so was the realization that her spine was bent into an almost symmetrical S curve.
How can you miss such a shockingly obvious deformity?
And yet I had missed it.
As the reality sunk into my heart and mind, I now realized why my daughter looked so off kilter and slouched in her posture.
And then the guilt set in.
What kind of mom am I? How do you not see what is right in front of you? I homeschool my child; I’m with her every day. Am I a bad mom? A negligent mom? An unobservant mom?
Friends were asking about braces and I was replying with news of surgery.
“What? So sudden? Talking about surgery right away?”
“Well, her curves are already to the point that surgery is recommended.”
“What do you mean? How did it happen so fast?”
Guilt.
It did happen pretty fast — within a year — but the truth is that I didn’t see it.
I’m not a nervous mom when it comes to health issues. I think a little dirt is good for you and that most ailments are cured by sleeping longer and drinking more. I don’t frequent the doctor’s office and don’t buy a lot of medicines. So I brushed off Emma’s back pain as normal “growing pains.”
I didn’t see the scoliosis because I wasn’t looking for it. My child is healthy. So why look for problems?
And then suddenly there is a huge problem in the black and white of a photocopied x-ray.
So on one side of my brain there is this huge load of guilt. And on the other hand there is reality.
Reality #1 There is nothing we could have done to stop the scoliosis. No, not even bracing.
Reality #2 None of us were emotionally able to handle yet another tragedy when we were expelled from China. Not knowing was a mercy from God.
Reality #3 We live in Memphis where there is an outstanding, nationally recognized children’s hospital —Le Bonheur — that does over a hundred pediatric spinal fusions a year.
Reality #4 Our surgeon called Emma’s scoliosis and her surgery “straightforward.” (The irony of using that word — straightforward.) It was the normal pattern for scoliosis and would require a very standard surgery that he is well equipped to perform. In other words, just another day at work for him. Her scoliosis was not strange, unheard of, difficult, or confusing to the medical staff.
So I told the guilt to go away. Goodbye. Not welcome to stick around or ever come back.
Any guilt I had was
- misplaced
- from the enemy of our souls
- to be rejected outright
Yet God had another gift for me to make sure the guilt never returned.
One of our many amazing nurses at Le Bonheur was Sandra* who routinely cares for kids after they have spinal fusions. During her 12 hour shift, we chatted as she came in and out of Emma’s room. Then she shared with me that two of her three children have scoliosis and even have the same orthopedic doctor that Emma has. Interesting coincidence.
But the blessing came when she explained how she did not see the scoliosis herself. Her pediatrician spotted it first.
God’s bullhorn was blaring. Here was an experienced RN who works with scoliosis patients daily. She did not see the problem in her own child.
And guess what? Sandra felt guilty about it.
It was one of those surreal moments when you are interacting with another person on the outside but in the spirit you are having a conversation with God. Actually it was more of an unspoken exchange.
I looked at God with wide eyes of amazement. He looked at me with a knowing smile and a gentle grin.
No guilt. Just God’s providence.
*name changed to protect her privacy
All Posts in This Series
- New Series: Homebound Homeschool
- How Did I Not See the Scoliosis: Dealing With the Mom Guilt
- Preparing for Surgery
- In the Hospital
- Transitioning Home
- The Beauty of Homebound Homeschool
- What to Bring a Teen Who is in the Hospital or Recuperating
Jimmie,
What a heartfelt series so far. I applaud your restraint in not *over sharing* without her consent. You know I’m later to the blogging world and had teens and respecting their dignity is big in my household. I see some things on blogs and wonder do I *really* need to know all that? lol The first potty…lol Truthfully, these kids grow up up folks..
But more than that…I feel your guilt. It’s hard to not feel that way when we are with them everyday,kwim? It shows the depth of love for Emma.
Without over sharing here,lol, I wanted to say when something happened to me tears came first…but forgiveness followed. Knowing that we can throw all our anxiety on our Maker and he understands helped me to scoot through a rough time and then empower myself with knowledge.
Sharing with others was huge for me too…I am so glad you are sharing. Know your knowledge will help others to avoid it and brings comfort.
Hugs and heart your series
Tina
So sorry you have had to go through this, but thankful that Emma has gotten such good care. Who knows how many will benefit from your sharing this? Blessings.
Oh how I LOVE it when God whispers such sweet gifts in our ears. He has done that so many times in my guilt, despair, or you-name-it lie that I am believing. Thank you for sharing your heart today, Jimmie. Beautiful.
I’m so glad I dropped by today! I deal with a lot of Mommy guilt and this was such a wonderful reminder of where that guilt comes from! I’m glad that Emma is willing for you to share. My daughter has very slight curvature, so we’ve been dealing with the x-rays. I think that hers is going to stay in the 18-20 degree range because I think she’s almost done growing. But it will be interesting to read of Emma’s experiences with surgery.
I am so glad you recognized the blessing of timing… you could substitute “Asperger’s syndrome” for scoliosis in this post and be writing our family’s story, and like you, we went through a period of just soul-wrenching guilt about not seeing it earlier, and like you, I have come to realize that the diagnosis came at a point where I could process it without being quite so overwhelmed by other major problems in our lives!! That’s been hard – harder than I can put into words, but you did so well!
Wow! I admire your strength to deal with your guilt in such a powerful way. Guilt is a formidable opponent. I need to learn from you. I tend to feel guilty about lots of stuff. Praying that Emma’s surgery will be smooth sailing and looking forward to hearing the happy report! *hugs*
By the way, one of these days, I’d love to hear your China story. (I lived there for a year myself.) I wish I could meet you in person but we’re way too far apart. One day! ^_^
Oh, Jimmie! I feel for what you’ve been through. And how wonderful that you’ve found the victory in this situation. I, too, love how God brings those witnesses into our lives to gently show us that He knows our frame and remembers that we are ‘but dust’. He doesn’t expect us to always see everything or do things perfectly, because He knows we can’t. Thanks for having the courage to be a witness to others.
Wow! I can not imagine all that you must be feeling. I so admire your strength to fight the guilt and to share your story with all of us. You are an amazing woman, an amazing mother and teacher – not just to Emma but to everyone who reads your blog. Thank you for being so open.
Love & hugs from California!!
Oh, the mom guilt you must have felt… and I’m so glad you had clear signs from God to release that guilt, Jimmie. You’re a GOOD mom, and I’m so glad your girl is on the mend.
I just read this and then read it to Keilee. We are both so glad that Emma is doing so well. The Mom guilt…I know it well. After being laid off for 4 months I have bouts with it often. But I look at my child and know she is happy and lacks nothing and try to push that guilt out the door. I loved the story of “Susan”. God puts people in our lives EXACTLY when we need them.
Amen! Guilt is of the enemy in those situations. I hope she heals well and quickly!
Reality # 2 – leaving China. To me this is perhaps the most forgiving thought. I know it was a crushing, ill-logical, surprising event in your life but it made way for Emma being in a situation where her diagnosis and care could be so quick and loving. Perhaps not the same experience had you still lived in China. On the heels of the emotional juggernaut that was leaving China you didn’t think yourself capable of more pain when the wound was still hurtful, however, there must be at least some brow wiping at being so close to exceptional care in Memphis.
Everything works out the way it is supposed to. Even the Mom-guilt if you think about it. We take even more care, appreciate more, and live more in the moment – so it is not lost. It is a gift, also, in some ways.
What a beautiful post, Jimmie. I think we all deal with guilt about things we miss, mistakes we make in parenting or things our children inherit from us that we hoped they would miss. My husband has a heart condition and I pray my daughters will not inherit it, in part because I believe he will feel such guilt if they do (even though he didn’t know about the condition before their births and can’t influence it’s development).
I love that amidst the guilt, God is showing you how much he loves you – and Emma. Thank you for this glimpse into your life and your heart. May Emma’s healing be rapid and complete.
Girl! Why you gotta go and make me cry?!
Seriously.. I’m glad you realize that guilt has no place and serves no purpose here. Emma will be fine and so will her mama. <3
Thank you, Jimmie, for the beautiful blessing you are…adding you and Emma {Sprite to me… :)} to our prayers..you have blessed me with your words..they challenge me and honor our Lord Jesus!! Rest, renewal and refreshing rain down on your dear family…love, Becky
Remove the word “scoliosis” and insert “Failure to Thrive”…mom guilt galore. How could I not notice he wasn’t eating? Prayers for your family!
Mom Guilt….I know it too well. I’m close to being emotionally ready to share my story of my son’s Failure to Thrive at 5 months. The buck stops with me, so I had to accept that I had missed it until it was so bad. Then I had to move forward. Not without lots of tears, of course.
{{{Hugs}}} to you for sharing your pain and guilt. Why did no one explain that motherhood and guilt are so interwoven?
May you be encouraged by Lord as He leads you through this valley. I’m sure you have seen that compassion for others is birthed through one’s pain and weakness, and I trust that your ministry in this blog will grow as you share the rest of this series.
yay for letting go of guilt! we can be so quick to carry burdens that God does not mean for us to carry.
and thank you, Heavenly Father, for your perfect timing in all things.
A friend of mine forwarded your blog entry to me. I don’t know you, but I know what you are going through. I am so sorry!!! Much of what you describe, I have gone through and continue to go through – daily. I, too, have a daughter with scoliosis. I know about the guilt – I didn’t “see” her scoliosis until she developed a huge rib hump on her back. And, even then, it took one of her dance teachers to point it out to me. I found your blog entry very moving, but I have to disagree with Reality #1. It is true that scoliosis cannot be stopped, but it CAN be controlled.
My daughter’s curve is more like a “C” and was at 37 degrees. She has the type of curve that almost always gets worse since even gravity pushes down on it. Add that to the fact that she’s only 11 and hasn’t hit her big growth spurts yet, we were told that the potential for surgery was great. As a world-level Irish dancer, surgery would mean the end of dancing for at least a year, and, at her level of competition, that amount of time would be almost impossible to make up.
Then, God stepped in and showed us an alternative. I was the biggest skeptic in the world. You see, all of my daughter’s doctors said the brace was the only way. Now, this doctor was telling me he could reduce my daughter’s scoliosis curve. I actually told the doctor he was nuts! However, as a mom, I was hoping for a miracle, and he was offering me one. After thorough research, the pediatrician & ortho both said the treatment wouldn’t hurt my daughter, but both were as skeptical that it would help. So, off we went to Celebration, Florida for 2 weeks of intensive treatment – and, yes, it was intensive, and emotionally draining for my daughter & myself. At the end, we got our miracle – my daughter’s curve went down to 29 degrees. Now, 8 degrees doesn’t sound like much, but it is a decrease when all of the doctors were saying nothing could stop the scoliosis. To say my daughter’s doctors at home were surprised is the understatement of the year. But, x-rays do no lie.
Where are we now? My daughter has specific exercises that she does for an hour a day, twice a day. We know that her scoliosis will again get worse as she grows. We are keeping a close watch on it, and we will go back to Florida every 6 months to a year to get it reduced once again. Reality – my daughter will never have a straight spine. There is no cure for scoliosis. But, if, at 18 years old, my daughter has a 30 degree curve, we have beat the disease. This is our goal and what we pray for every day.
It sounds like this information is too late for your daughter. I pray that your daughter’s recovery is quick and smooth and that she gets “back to normal” soon.
For the people who may be reading your blog who have not yet gone through surgery, please look into this. I am NOT a doctor – maybe if I were I would have been able to spot her curve before I did. Yes, that is guilt still talking. I am just a mom with a daughter with scoliosis. Feel free to contact me.
Hey, Jennifer. Thanks for sharing your story. I am glad that you found a non-surgical alternative for your daughter. Unfortunately, like I said, by the time I find my daughter’s scoliosis, we were past that point.
I think sometimes those things just happen upon us – almost as a reminder of our weakness as parents and humans. Praise God for Sandra and her encouragement!
What a powerful testimony, Jimmie. Haven’t we all been there? Where was I when my daughter broke her leg roller skating? At home, across the street. Where was I when my son split his chin open on the pool coping? In the house while he swam with his older sisters. Believe me, I felt like a bad mom for not being right there–not that I could have prevented either accident. The glory is this: What the enemy seeks to twist (no pun intended) into something ugly–namely, guilt–God uses for good by letting us see glimpses of his bigger plan. Love that you have been able to identify those realities, and grateful that he placed “Sandra” in your path at just the right moment.
(((Hugs))) I feel you. We just found out that our daughter has type 1 diabetes. And probably has for more than a year. Hindsight being what it is, the signs were there. They seem glaringly obvious now but at the time many of them seem like normal tween/teen stuff.
On the bright side, I can now see how God was preparing us for this new chapter of the rest of our lives. It is amazing how one day can change everything though.
And you’ve reminded me that I need to go get her some xrays for her back because she might have scoliosis too. Diabetes distracted me from that one. lol And I’m so glad that Emma has such a good health care team surrounding her. God is good!
In a word, Thanks.
Yep, I know mom guilt too. My oldest son had been having seizures for over a year before he was diagnosed with epilepsy. The type of seizures he started with manifest as staring spells, so he was scolded and had priviledges revoked on many occassions for “daydreaming.” During seizures he often suffered from incontinance which he hid because of embarassment. I didn’t find this out until he mentioned it to his doctor a year after starting medications. 🙁
When my #4 son broke his arm, I palptated it to figure out if the bone was broken. When my husband saw the arm, he said, “How could you not tell that was broken?” And when I saw the x-ray, I cringed at how much I must have hurt him while I was touching that arm. 🙁
We all have things we “should” have done better. But the fact that you have “mom guilt” is a sign that you would, if possible, do everything you could to keep your child from suffering. Your mom guilt shows just how much you love Emma. And, what is most important is not the things you missed, but what you did once those things were pointed out to you. 🙂
I am sorry for the shock this was to you, but I am thankful that you could see how God has been preparing the way for this. Thank you for sharing that. It is always good to see God’s gracious hand working.
Thank you for sharing this. My daughter was diagnosed last May and her curve was already past the 40 degree mark. It’s progressed 10 on the top and 20 on the bottom in the past fourth months despite bracing and physical therapy. I still feel guilty, but I’m working through it and knowing that I’m not alone in that really helps.
Thank you soooo much for sharing! Heartfelt thoughts are with you and Emma for a quick recovery. Such a blessing to see how others handle the mommy guilt!
Praying for you and your daughter! And BIG hugs!!!!!!!!!!!!!!!!
I missed this post back when you posted and am reading it for the first time today. “Don’t pick up the guilt” is a phrase I’m learning in a biblical counseling course I am working through and it is repeatedly applicable to all of us moms.
I’ll be praying for you and Emma as you all continue your homebound homeschooling.
Blessings,
Nikki