Schmitt Family

Jim didn’t seem focused whether it be in school or playing. His attitude was different and he seemed distant with his friends. Testing was done at school and they told me everything was fine and not to worry. It still nagged at me so I took him to the pediatrician.
We were in God’s hands right from the beginning.
The pediatrician didn’t see anything wrong but agreed right away for Jim to have a brain scan. He called to tell us that the scan showed a disease that he knew nothing about and he had made an appointment with a neurologist for the following day.
Jimmy was Dr. Weinstock’s first patient here in Buffalo. The dr. had just moved here 2 weeks prior. After looking at Jim’s scan he knew exactly what to do. At his previous practice, he had taken care of a boy with the same disease. No time was wasted. All the tests that needed to be done were done within a matter of hours.
Can you imagine for just 1 minute what it was like for us to hear that our son that was soon to turn 9 years old had a genetic brain disease that there is no cure for? That the disease would most likely progress at a fast rate and would take his life in 3 months? This wasn’t happening!!!!!!!!!! I couldn’t breathe. Couldn’t think straight. Nothing made sense any more. It felt like we were falling down this deep dark hole at a very fast rate and there was nothing I could do to stop it. Everything came crashing down on us. Our hopes and dreams. Children were not supposed to die before their parents.
And then I read Ephesians 3:16 – 20. “I pray that out of his glorious riches He may strengthen you with power through His Spirit in your inner being so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love may have power together with all the saints, TO GRASP HOW WIDE AND LONG AND HIGH AND DEEP IS THE LOVE OF CHRIST and to know this love that surpasses knowledge that you may be filled to the measure of all the fullness of God. Now to Him who is able to do immeasurably more than all we ask or imagine according to His power that is at work within us. “
This is the God of the universe and He wants to show me Sheila, just a wife and mom, no one special. TO GRASP HOW WIDE AND LONG AND HIGH AND DEEP IS THE LOVE OF CHRIST. I still can’t wrap my head around this. But I am special, He loves me and died for me.
Did you ever see a photo of the earth with 1,000’s of people together in a photo and as the camera lifts up farther and farther from the earth the people are unrecognizable, they turn into dots. Well, he knows which dot I am and he cares deeply for me.
Within a week we were on our way to Minnesota to see if Jimmy was a candidate for a bone marrow transplant. This is only a treatment not a cure. Jim would be the 104th boy in the world transplanted for this disease. Within 10 days we received word that there were 5 donors and 1 cord blood donor from Germany. I was told that this is an incredible amount of matches.
Within 2 months we were settling into the Ronald McDonald House in Minnesota. At the time it was the only one that had a school house on the premises for all the children. We could still be a family together.
Three weeks after the transplant, Jim woke up and couldn’t walk, speak or move. We were told the disease had progressed most likely from too much radiation. We were airlifted back to Buffalo. Jim could still smile and smirk when he wasn’t so sedated. Those were real treats.
In NY, there is a program for sick children. Only 1,000 children are allowed in the program. This provides payment for whatever your insurance company does not cover for all medical treatment and supplies and nursing. At the time 996 children were already enrolled. Our case manager was able to get Jim signed up.
Jim was also enrolled in Essential Care, a children’s hospice. The pilot program was here in Buffalo.. the only one in the world!!!!!
I was asked to speak several times on their behalf at benefits. I have no speaking experience but I had a passion and such an appreciation for what they did and the words just flowed out and I wasn’t nervous.
Even though Jim could not attend school in our district, the special education department oversaw his care at a special school nearby. I have talked to other parents and heard how they had to fight and fight for services that were just handed to us. Again I felt passion and gratitude for this program. I became a parent advocate. I wanted to encourage other mom’s to see the good in each of their situations.
Hunter’s Hope is right here in Buffalo. The support we received over the years was so comforting and appreciated. We have met so many families that we call our own. The bond between us is remarkable.
A group of people from our church created Team Jimmy. They were trained so they could come to our house so Mike and I could attend church together.
All the nurses and care givers at our home truly loved Jim and took care of all of us.
Over the next 15 years, Jim was hospitalized over 40 times mainly for pneumonia. He was on a ventilator several times for over 40 days. Each time he was released with a smile on his face.
This is only a small sampling of how the Lord looked after us. Many times, I talk to other families and they are truly amazed at how everything fell into place. But nothing was random. We were in His hands the whole time. I can’t even imagine how anyone can go through troubles or just life without God.
Shortly after Jim passed, I was asked by Children’s Hospital to be on a panel for parents whose children have aged out of pediatric care and are now in adult care. I tried desperately to make the decision makers understand that these kids parents still needed to be with them at all times. The parents needed to bridge the gap between the hospital staff and their children.
I don’t think I will ever understand why Jimmy wasn’t healed. So many, many people prayed for years for him. When I read of all the miracles of Christ, it hurts. Why not Jim?
Each day I prayed for wisdom and guidance. Jim wasn’t healed but I could see how we were cared for in so many incredible ways. Even now as much as it hurts, I truly do have peace about things. I know where the peace comes from but I am still amazed that I have it.

I can question it all I want. But He is still God.
Romans 11: 33-36
Oh, the depth of the riches of the wisdom and[i] knowledge of God!
How unsearchable his judgments,
and his paths beyond tracing out!
“Who has known the mind of the Lord?
Or who has been his counselor?”[j]
“Who has ever given to God,
that God should repay them?”[k]
For from him and through him and for him are all things.
To him be the glory forever! Amen.

I look back on the 35+ years we have been married. Where did the time go? Has Jim been gone 9 years already? All the should of, would have, could have moments that never happened.
Mike and I are now empty nesters. We are fortunate that Steven lives nearby and we get together often. I am so proud of Steven. With all of the attention that Jim required, Steven could have taken the wrong path. He is kind and caring. Mike is retired from his full time job but still works driving bus for our school district.
I am looking forward to retiring from my full time job in September 2022. I will continue to do bookkeeping part time as I truly enjoy it and I have been told that I am good at it. I finally found out what I want to do when I grow up.
Recently, we went on a Caribbean Cruise. I was so overwhelmed with the beauty of the ocean. The turquoise color of the water, the waves and the sheer magnitude of it. I am reminded of God everywhere. This is His world and He knows right where I am.
We are looking forward to the next chapter of our lives.