Maintenance

Tonight as I am processing the thoughts and events from today and reading other people's hard struggles, the word that comes to mind is maintenance.  We have been on cruise control where our Thomas is concerned and I am thankful for that.  So thankful!!!  Yes, we have had issues to deal with here and there but nothing that we can't keep moving forward with.  Most days I don't carry the burden with me that comes with having a unique child.  Then there are those times when we have to realize that he is different and there are challenges we have to face.  They can be as small as being invited to a Birthday party that he can't go to because it wouldn't be safe or bigger such as being picked on at school for being little.  I find it easier to distract him and make life fun in the midst of the negative, but there are times when I want to sit down with the kids around him and explain his size, explain his limitations and have them love him as he his.  It hurts your heart as a mom.  Lately, I have felt more of a need to build Thomas up against those who could bring him down since I myself can't take on all the other kids.  I knew this day was coming, I know kids are mean, but it is still a touch reality to take in.

Then there is the conversation I had with my oldest son this morning that makes me take time to pause.  He had a permission slip for a scoliosis test at school.  For most, not a big deal, sign it, don't sign it.  But for us, it brought up a whole conversation that I was expecting.  I told him he could have it if he wanted but that our pediatrician always checks him and that Thomas has it.  Then came the questions about Thomas and his spine, etc.  I learned that he had been reading my blog at school and learning about his brother.  That made me take time to pause.  I have always tried to educate our family on Thomas' limitations and why he has them, but had my oldest son gotten old enough that he could really understand more and grasp the actual anatomy of his brother.  He could, he was and he did.  It made him sad and confused.  It was a conversation that needed to be longer than the fifteen minutes I had to drive him to school and the diagram of vertebrae drawn on my sketch pad.

I am thankful for the calm.  Thankful for routine and normalcy.  In a month, Thomas will have his follow up with his Orthopedic surgeon who is becoming more concerned with the condition of Thomas' lower back.  In the past weeks, we have started to have more concern as he complains more about lower back pain his normal daily activities that he never did before.  He started hurting when riding his bike or playing outside doing certain things.  He has stopped trying to do sit ups or other exercises during PE.  We help him with warm baths and oils, massages, but the fact is it is there and it is not normal. 

If you are reading my blog and are on this journey with us, please pray for him to have comfort and healing.  Pray for us to enjoy and be thankful for the time of maintenance that we may grow and learn from these times as much as the hard times.  Pray for understanding and acceptance of our difference among each other and especially among our children.  Thomas is a smart, strong little boy with lots of family and friends to love and support him.  This is a God thing.

       

He caused the storm to be still, So that the waves of the sea were hushed. Then they were glad because they were quiet, So He guided them to their desired haven. Psalm 107:29-30