Loss at any age is difficult, but when it is your own child, I think it makes it all the more painful. Many of my followers have commented on this shadow picture which was taken back in May of 2012. This was the year that would change the course of our precious little boy’s life. Little did we know, our son was about to begin the toughest battle he would ever have to fight. It was a long 5 years, but we are thankful for that extra time we had with him. That in itself was a miracle, as the initial neurologist team of doctors believed it was not going to be long, based on other patients they had with similar health declines. I won’t go into the details here, but perhaps on my Instagram instastories as the days progress.
Here is an excerpt from a private blog post I wrote in 2012, to give you an idea of why this shadow picture means so much to me and is a favorite memory for this grieving mama.
“Our precious boy will be turning 5 years old this summer and as this milestone in his sweet life draws closer, we are faced with the fact that our son has special needs that will most likely continue throughout his life. He may heal, and he may not.
At first, we thought that he was just slow and fell into the normal “boys are slower than girls, but will eventually catch up” category. At least that is what the doctors assured me when I would share my concerns. But as time went on, it was evident that it was more than that. We suspected something wasn’t quite right when my husband noticed (about 2 years ago) that he didn’t sweat. We were referred to a dermatologist and then to a specialist in Birmingham (3 hours one-way). We left with no concrete answers, just another referral to a neurologist for more tests.
Our little fella has always had issues with regulating his body temperature (cold as well as hot) and he has trouble coping with change. He struggles with communicating and will have melt downs throughout the day. We have been praying and waiting on the Lord before we put him through more tests. With all of the misdiagnosis and push to keep people on medication in our society, we want to make sure the diagnosis is accurate and not just some faddish term or favorite catchall.
Even with all of these daily physical and emotional challenges, our son remains a gentle and kind little boy who is willing to share and show love to others around him. He is content to play quietly with his Cars and Toy Story figurines and to take books off the shelf to look at the pictures and draw circles with his hand. He does very well with letter and sound recognition, knows most of his shapes, some colors, and his numbers. For most of the day, he has a smile on his face and loves to jump, run, dance, and make machine gun noises (not sure where he picked this up from) at his sisters and father.
We are hopeful that the Lord will open the doors necessary to find ways to help deal with these physical hurdles. Our main prayer is that he will be able to understand God’s unfailing love for him and that he would love and follow the Lord all the days of his precious life.”
My hope is that in sharing excerpts of these memories of our son’s life, including some of his struggles, that someone will be blessed by his testimony. Where he was unable to communicate, I pray that my memories would speak for him. I love the prayer that the Lord answered in His perfect time where our precious little boy now fully knows the Father’s love and will be following Him all the days of his precious life. We are holding tight to Jesus and His enduring promises as we pick up the pieces and move forward as a family.