Sinclair Family Journal
April 12, 2004- We finally found another place to live, after a month and a half of looking. We were prepared to move into a nice three bedroom townhouse this Saturday, but when we went to visit the landlord last week, he let us know that another couple had looked at the house that morning and wanted to rent it, and he would be making a decision between us. Great news to be giving us two weeks before our lease is up, mister! We found out today our realtor had nothing, so we ended up in contact with base housing on Fort Dix, NJ. The house is decent, and once we get moved in and get it dressed up, it should be nice. It will be nice to live in that military environment again.
Glennie continues to do well; he has had no breath holding spells recently. We have gotten accustomed to putting on a DVD during his breathing treatments on the portable DVD player his Aunt Becky got him, and it works wonders.
April 13, 2004 It's amazing how life can change in an instant. One moment, we were putting our focus on moving, and being thankful for our nursing company, who offered to pay our rent for another month so that our and Glennie's transition to the new house will be easier, and so there is more time to plan for nurses. The next moment, I was watching my son slip away and feeling somewhat helpless, wondering if I would be able to do anything to help him.
Glenn had gone to pick up some rugs we had just bought for the new house, and our nurse left right after him, as her shift was over for the day. When Glennie awoke from his nap, I turned on his little DVD player and brought him into his room for a breathing treatment. As I was suctioning, he plugged. His oxygen level began to plummet, and I raced over to open the O2 tank. As I stood with him bagged, I watched as his numbers continued to go down. 50....40...30..I began to shake, and to watch, terrified, as his numbers continued to go down. It's a scary thing to feel helpless. I knew I should call somebody; call Glenn, call 911, but I was too scared to leave the room to retrieve my cell phone from the dining room. I began to alternate suctioning with oxygen and his numbers began to shoot back up just as quickly as they had gone down. By this time I had called Glenn, who was racing home. Glennie seemed to be doing ok, but wasn't holding his own, so I began to coffalate him to help clear out his airway. It was at this time that his numbers began to drop, again. Last time to 26%, this time to 18. After again alternating suctioning and oxygen, he came back up. He was damp with sweat, and seemed to be doing ok on his own, but we made the decision to put the bi-pap on him, because he was obviously so tired from all that happened.
Before today, I would think back to that night in December when we called 911, when we weren't sure if Glennie was going to make it, and I wondered what would have happened if we hadn't had a nurse that night. Would I be able to handle something like that? Would I panic? At this minute I am still wondering if I should have called 911, at what point, and if I did the right thing. As I watched his numbers plummet, I wondered, "Should I leave him? What will happen if I leave the room?" I knew as I watched him that ultimately he is in God's hands, and I prayed for God to help me. He did.
Glennie is sleeping now, with his O2 at 97 and heart rate at 129. I marvel at that boy. How strong he is, to go through all that he does, and still be able to have a smile on his face. As difficult as it is to deal with his condition, I know we are so very blessed to have him.
April 19- Praise the Lord! Glennie has been approved to receive a laptop computer and a Smart Nav, a hands-free mouse. I sent an online request form a couple months ago to the South Jersey Kids Trust, an organization that will pay for educational and recreational equipment for handicapped children. We still have a little bit to work out, but we should be getting the laptop and mouse for Glennie soon. With the Smart Nav, we can stick a dot-sized sensor on Glennie's finger, and his finger becomes the mouse. A friend who lives in our area also has a son with SMA, so we got to preview the equipment and some computer programs. Glennie loved using the computer to color. I can't wait until he gets his very own!
May 21, 2004- It's been a while since there have been any updates, but needless to say we have been pretty busy. Our little Glennie went home to Heaven May 6, 2004. It was expected, yet unexpected at the same time. He was having a hard day, and it was apparent that something was bothering him all morning, but even as he began to struggle to breathe, even after we called 911, I wasn't thinking ahead to what the day might bring. I was focused on helping Glennie to feel better. Even now, two weeks after his home-going, I still remember with absolute clarity the details of that afternoon after I climbed into the front of the ambulance with Glennie in the back. I wonder how long that afternoon will remain fresh in my mind; if there will ever come a day that I won't think about it. I remember it being 5:00 in the afternoon. I remember the curious neighbor kids watching from the front yard as the stretcher was pushed down the sidewalk. I remember as they loaded Glennie into the ambulance, and how he looked like he was sleeping, and waiting in the passenger seat a seemingly long time and wondering why we hadn't moved. So many details, and yet I didn't realize the direness of the situation. We knew of the possibilities whenever Glennie was taken to the hospital, but he had always been ok. I was certainly scared, but all I wanted was for Glennie to be comfortable, and to not be afraid. Once in the ER, there were so many doctors and nurses crowding into Glennie's room that some were asked to leave. I was led into a little room, where the social worker sat and talked with me. I was trying to keep it quiet, so I could hear what was going on next door in Glennie's room. I listened to the constant chatter and busyness going on, trying to understand what was happening. I remember that I began to pray; I prayed that God would give Glennie comfort, and help him to not be afraid, even if it meant He had to take Glennie home. Even if it meant we had to hurt for the rest of our lives, just so Glennie wouldn't be in pain. He answered.
I had prayed so many times over the course of Glennie's illness for his comfort, and at times, for healing. What we have realized is that God has certainly answered those prayers. Not in the way that we would have thought, but they were answered all the same. Glennie is healed now, and he will never know pain, discomfort or fear again.
We, as Glennie's family, will surely hurt for the rest of our lives. But I will take on that burden for the knowledge that our smiley little boy has so much more now to smile about. In the great span of eternity, life on this earth isn't more than a mere minute. While we are here, I know we will cherish the lessons and the love that Glennie has brought to our lives, and that will carry over day after day. I know we will use this experience to the fullest extent we know how. And then we will see him again.
January 6, 2005- It's been such a long time since this has been updated. I was on Glennie's site looking at his pictures, and felt the need to write. Where to start? We are expecting a baby in March; we made the decision not to find out if this child will have SMA like Glennie, until he is born, at least. In the beginning, it was hard not knowing, but we both felt that with the possibility of a false negative, we didn't want to go through with the test unless we could know for sure. Anyway, sometimes I wish Glennie could be here with us to greet his little brother, but then I am reminded of how happy Glennie is, what with not having to feel any pain or suffering. Even though we still grieve deeply, even though we still wish we could hold him, touch him, and hear him "talk," I am glad he is where nothing bad can touch him. I am glad that he was in our lives; I continue to think every day about what a blessing he was, and what blessings he brought to us.
December 8, 2005- I know that I say this every time I write now, but it has been such a long time since I have written. I have been inspired to write tonight after learning about the passing of a beautiful little girl, Morgan. She was 3 years old, and died of SMA 2 this past weekend. Whenever I read of the passing of one of these sweet babies, it brings me back to the pain we felt the day we lost Glennie. It takes me back to the shock, and to the question that took over my mind that day, "Where do we go from here?" It reminds me that I absolutely hate Spinal Muscular Atrophy, but that we have so much to learn from these children and from our experiences with them, and that we have already learned so much. It brings me back to the tears of losing our Glennie, and also brings me to tears at another family's pain at losing their baby to this disease. It's amazing how one child that you do not know can be such an inspiration, such a lesson, and such a reminder of what life is all about. It's a reminder of how truly powerful our God is, of how much he truly loves us in the first place to give us such wonderful, indescribable, precious gifts such as Glennie and Morgan. It's a reminder that sometimes he needs to teach us things through sorrow and tragedy.
I often wonder what Glennie is doing, what he will look like when I see him again, and when I will see him. Does he play with the other SMA kids? Does he see us? I also often wonder what it would be like if he was alive today. I think he would take such delight in his younger brother, Jeffrey, who, I must mention, does not have SMA nor carries the SMA gene. I think Glennie would laugh at Jeff's squeaks and squeals and watch his little squirmy brother with amusement. I also often think about how wonderful it would be to have these two brothers here to play and to grow together. It's hard to imagine how big Glennie would be by now; he would be 3 years old. I think of these things, but then need to remind myself that none of them were meant to be. Everything has happened exactly as it was meant to. There are so many questions that still remain unanswered, but every day I know that God is good, despite any bad things that may happen, despite any hard times one may go through. Every day, I know that we still have so much to learn, and that God wants to teach us what we need to know; that is why everything that happens is for good, because it helps us learn what we may not realize we need to know. It still doesn't feel that losing Glennie was good, but I trust in God's love and His wisdom. I know that I can never be angry with Him that He allowed my son to be taken away, because He did it out of love and out of the desire for all of us touched by Glennie to be better. I can't, and won't, be angry with Him, because I know that when God took Glennie away, He took my boy to the best place in the world to be; to safety, to happiness, and to a place where anything negative could never exist.
I don't mean to preach; I'm certainly no expert on God, and I certainly don't know His mind. I do know that He loves us; He loves us enough to lose His only son for our sake. I know He has a lot He wants us to learn, even if He has to hit us over the head with a hammer.
With my nose running and dried tears on my face, it's time to go to bed. I feel better having written and having updated this site dedicated to such a beautiful boy, and to such a beautiful and loving God.