This morning, I got a text from my best friend, Kate. She sent me a message showing a flashback from Facebook, “Thinking of sweet little Tough Guy today. Sending positive thoughts his way!”
I completely forgot that five years ago today, Tough Guy had the longest surgery of his little life. He has had many procedures and several big surgeries, but this surgery was his longest surgery, at 12 hours long. It was very complicated and he was only 15 months old at the time. We had time to plan and prepare and worry for this surgery. We had time to fall madly in love with this little boy and the thought of handing him over made me sick. We had dreaded this surgery since he was born, but we knew it was necessary.
It’s really not fun, going back and thinking about your child’s surgery. Even though it was five years ago I still remember the anxiety in the days and weeks leading up to the surgery. I remember my fears and the wait. I remember seeing him all swollen and asleep in the intensive care unit. I certainly remember the pain. So, really it seems so odd to reflect on that day.
But, I really do think it is important that I remember that day also because I also remember something else.
I remember all of the love and prayers we received from so many people. People close to us, old friends and even strangers.
I remember that when we were worried, weak and weary, we knew we were carried in God’s love.
And I remember my motto that year, allow the miracle.
You’ll notice at the end I said, I even envisioned Tough Guy’s little legs moving, jumping and walking. I prayed for that miracle since before he was born.
In the weeks, months and years following that surgery, I learned that Tough Guy didn’t need that miracle. He was made beautifully and wonderfully, just how God intended him to be made. God didn’t intend for Tough Guy to walk, (at least not then or now). If you know Tough Guy, you would know he doesn’t need to walk to get around, or get what he needs, or speak his truth. He manages this world just fine.
I think God did intend for another miracle(s). I think He did want my eyes to see and my heart to know, that the worth of a person isn’t in what they do, but in who they are. I think He wanted me to see that sometimes disability isn’t just about a person’s physical, mental or cognitive state, but in the perceiver’s disability to truly see a person. I also think that He wanted to remind me, that miracles happen in big and small ways everyday.
So, here’s a flashback post and a reminder to always, allow the miracle.
18 months ago we heard that most of our unborn child’s body systems had something wrong with them. Things would not be in the correct place or function how it should. We prayed. We begged for prayers. We believed. We hoped for a miracle.
June 16th a miracle occurred. Tough Guy was born alive and strong.
June 18th, he endured his first surgery. He did well and again, we felt God’s hands protecting our little boy. Another miracle.
August 24th at 2 months old, our little Tough Guy had his second surgery. He had a 2 pound fluid filled sac filling with spinal fluid from his cord was removed from his small 10 pound body. He was eating within an hour after this major surgery and home after 9 days. Another miracle.
Our little boy is now 15 months old. We were told he may not develop like most children. He has a vocabulary of 25 words, can toss the football, sits on his own, drinks from a straw, loves pizza, potato chips and American cheese. He gives us kisses and claps in delight…..
God is working. We are blessed.
Tomorrow we will leave for the hospital at 6 am. Tough Guy will have a small procedure to have a PICC line placed. This will provide him with nourishment, fluids and medicine while he is in surgery and recovering.
Tuesday he will have his big surgery at 7:30 am. It is expected to be at least 12 hours long. Four surgeons will be involved. It is too complicated for me to explain, but to be quite honest, I am not sure I can even explain it in a way that makes much sense.
Throughout our journey we have had so many people tell us that they are praying for our sweet little man. We are humbled to know that you all are sending love to our special boy. We truly could not have been strong for Tough Guy, without each of your support. I have great comfort in knowing that when I am tired and down, someone, somewhere is praying for our little boy and I am amazed.
I want Tough Guy to know that he is perfect and I love him exactly how he is. He doesn’t need to change one bit and in my eyes, he is beautiful and perfect. I also want him to know, I believe in miracles. I believe that God can heal his body and work through his surgeons to help make his earthly body more functional. I believe that God can do anything. I just need to allow the miracle.
So today, if you have a moment, would you join me in saying a prayer for healing for Tough Guy, wisdom and skill for his surgeons and belief. Please believe with me that with God, anything is possible. Please visualize Tough Guy’s body healthy, whole and functioning the best that it can. I even like to picture his little legs moving, jumping and walking.
Please join us.
allow the miracle.
* Today, as I read this post and remember Tough Guy’s surgery, I pray today for all our friends enduring surgery during this time. May they also feel God carry them and allow the miracle.