When I was pregnant with Abby, I remember praying daily that nothing would be wrong with the child that I was carrying inside my womb. I have a distinct memory of putting my head on the steering wheel of my car at a red light one day and begging God with everything in me to give me a healthy and "normal" child. What did I fear during those times? Was I just being selfish in begging God for a perfect child? Or did my heart know that I would once have a child who was not deemed as "normal"?
To say that the past few days have been tough is a severe understatement. Samuel's death has had a profound impact on not only me, but my entire family. It has made us discuss issues that we have never discussed and frankly, want to ignore. It has awakened us to the fragility of life. It has made us seek God for comfort, guidance, and love.
I never expected to have a child with special needs. And I never expected for death to be such a prevalent subject in our life...in our family...in our conversations. I never expected to lose friends...loved ones...children. I never expected any of this. But God did. God knew what was in store for my life the moment he knew me. And I take solace in the fact that God not only knows my past and present, but he also knows the trials and triumphs that lay before me...and he knows how to hold me up in these times. He is God.
Abby has asked a lot of questions lately about mito. She's a smart little gal, and she has caught on quickly that there are quite a lot of people that die of this dreadful disease. I have reassured her over and over that Nathan is healthy right now, and while it is a serious disease, we do not expect Nate to pass away any time soon. Those are not the conversations you expect to have with your children.
I told Abby about Samuel's death a couple of days ago. She had seen pictures of him from our previous visit and heard numerous stories about him. Abby is my internal kiddo...she seems to trap her feelings deep down inside of her heart so that no one sees her hurting. She took Samuel's death with sadness, but seemed fine.
I did not tell Emma. As a mother, I want to shield my children from everything in this world that can cause pain. I didn't feel she was ready to hear that children as young as her can die. She has so far been under the immature assumption that only old people die, and I didn't quite want to ruin that ignorance...
However, Emma came to me in sobs today telling me that she was going to be so sad when I die. Obviously, she must have heard me talking on the phone to other mito families and inadvertently heard of Samuel's passing. I then sat her down and explained about Samuel and showed her pictures and recent videos of the sweet cutie pie. Em was an emotional basket case today. She definitely does not internalize her feelings.
Due to the recent conversations with the girls, I felt that it was appropriate for us to use today to send balloons for Samuel...green balloons for mito with a letter of memories of Samuel attached to the string.
Before releasing the balloons, Emma asked to pray for Samuel's family. In her prayer, she asked that God would allow Samuel to eat anything he wanted in heaven. She also prayed that Samuel's mom and dad and sister would be able to remember him by looking at pictures and videos of him. It was a precious prayer...a heartfelt prayer from an emotional little 4 year old whose heart was touched by a boy she had only heard about.
Abby prayed next...that Samuel's sister would be okay as an only child and that she wouldn't feel too sad not having her brother to play with anymore. She then asked God to make sure that Samuel's mom and dad would not feel lonely for a long time and that they would know that he was better in heaven.
We were all a sobbing mess after this. I had no idea that my girls comprehended so much regarding Samuel's life. I had no idea that they understood this much. I held them tight against me as my shoulders were soaked with the tears of my daughters, experiencing extreme hardships in life at such a young age.
I never expected this to be part of our life. I never expected to worry about death for our children, much less worry about my children expecting death for those close to them in their life time. But God did. And He will carry us through.
Please keep Samuel's family in your prayers through the next few days as they lay their son to rest and celebrate the life that God gave them to love and enjoy during Samuel's time here in earth. Please remember this family.