Sofia brought me this little golden book to read to her the other night. It was made up of simple prayers for children. Most of them were about thanking God for the birds and flowers and bountiful meals surrounded by family. She chatted away about things in the pictures and shared some prayers they had learned in preschool. Then as I read on, she grew more silent after reading:
Now I lay me down to sleep,
I pray the Lord my soul to keep;
if I should die before I wake,
I pray the Lord my soul to take.
Then her innocent questions about it made me made me think about how I never imagined my children would worry about death or their brother's health or about any of us for that matter. I do want my children to understand the value of being grateful for each day but it is hard to look at all they have had to adjust to in one year. I want them to understand that even though those we love may one day leave us for Heaven, they are in God's protection and remain with us in spirit. I know they have wrestled with watching their brother's challenges and I hope they never have to fear losing him, but I also want them to know that God is in control of how long any of us are here.
It was not long before this conversation, that I found out about the passing of a sweet child who we had been praying for..Maggie and then later this week..Cooper. Both past away after a hard fight with Mitochondrial Disease. It makes me so sad. Maggie was 2 and a 1/2 and Cooper was 6. I hurt so much for these families. I don't know them personally but I feel like I do because so much of what they have written on their blogs is familiar to me. It has helped me cope to find there are other families that are coping and putting trust in God.
There is this vulnerability in having a child so medically complex and feeling rather alone with it.. but these mothers have been so strong. It is evident that most of the families who I have followed via blog are clearly not alone. They are quite surrounded by God's spirit. It helps to meet others and witness their strength. God intended us to witness to others. I am not sure he ever imagined it to be via internet blogs. I hope these families know they have witnessed to me and many others. To watch your child struggle and be unable to help them is something no parent should experience in this way. I guess it makes me think about God having to watch his only son go through such horrible pain and suffering on the cross. All for us. I am praying for Maggie and Cooper's families. They earned their little angel wings and no longer have to feel pain.
This week, Samuel started banging toys together. This is a precurser to clapping. He is making progress with the use of his hands. His therapist did notice he was not lifting both arms equally as high and in working with him I found it is true at the later part of the day. He struggled to lift to shoulder level whereas in the morning he had them above his head. I would say he is just tired but he had slept most of the day. We started occupational therapy and she started us doing some joint compression to give input to his brain to work the joints and muscles. We played in cheerios and he had no sensory issues with digging for toys in the cheerios. He used a pincher grasp to pick up some cheerios and she said he was "showing off" for our first session. He was tanked out after about 30 minutes but overall it went really well. He will have this 1x per week now. The funny thing is that playtime has such a different meaning with Samuel. I find myself working to think of what we are not doing enough or what would challenge him in such an organized way..where I would just plop the girls down with some toys on a mat and move on.
He had a neuro appt this week that went well except the moment when his Dr. passed on the opinion that no matter what kind of up and down pattern Sam experienced with his health and milestons, overall he would progressively experience degeneration. This is not the same feedback we had from our mito specialist.. so after much frustration..I am letting it go. In Atlanta, we were given the impression that every child is different and his story is unwritten at this early stage. I am going with that mode of thinking. Our Dr. had alot of questions and is planning some bloodwork and another barium swallow test (it has been a long time since his last one) which has me quite worried. They did not order for a speech therapist to be there and I have no idea how they will observe anything since he takes so very little by mouth without choking. I hope they will be prepared for the major desats, airway issues etc..the last time he was bagged several times before it was over and then the next few days were not so good.
We may have to reschedule anyway if Sam does not get a little stronger tomorrow. He came down with something this weekend which has been happening almost every weekend for several weeks..we have a few good days.. and then some not so good days. I paused his feeding on Friday when he was acting exasperated and struggling a little..then all of a sudden he was his jolly self again. This usually tells me he is not tolerating the feed well because of his GI issues.. the source of the pain. sick yet again. The weird part is that his food going into the intestines is not backing out of the stomach during the rough periods.. it is just sitting and leaving him in pain. It also is not exiting as usual. When it does finally exit a week later..it is liquid. After a few hours on a break I restarted his feeding pump and he went back into the pain mode. He was also tugging his ear and the pink eye is creeping back in. The Dr. said this is Conjunctivitis-otitis media syndrome where basically the infection of the ear is traveling to the eye.. not traditional pink eye.
On top of all that, he had 6 brady episodes this weekend and a few grey spells. That is Sam's way of making sure we are paying attention! Hopefully we get into see someone Monday. I am avoiding the ER at all cost and as long as I keep food going we should avoid an admission. I think he never kicked the last bug and we just need a different antibiotic. It is so strange since the girls did not have antibiotics till they were 3 and 4 years old and even then have only had to have it a few times. Sam, meanwhile, has had every kind and they seem to do nothing for him. I pumped so he could get my milk exclusively for 8 months of his little life but had to stop when all this was getting so intense and without help there just plumb wasn't enough of me. I hope I gave him enough of the good stuff and that stopping is not making things worse.
The week ahead is looking rather busy with getting Sam checked out by the Dr. tomorrow, a swallow study on tuesday and birthday parties next weekend for Bella and both her cousins. Then the following weekend will be Sam's first birthday and possibly his baptism.. There were times when I did not think we would make it. It will be a most joyous day for him. He may not be eating any cake but it will surely be a special day of thanks and celebration.