Sammy is doing better, making a comeback after a really miserable week. The days following one of his "crash" illness periods are always a strange phase for me. I find myself very thankful and I value each little smile and am so appreciative that he is breathing with ease. At least we avoided another inpatient hospitalization..knock on wood. I am keenly aware of how easily we all take for granted the special and unique gifts God has given us each day. No matter how many times I tell myself I am fully appreciating life more now, I still find a new level of appreciation when he recovers from each illness. Sam is still having periodic heart rate rate drops and d-sats. Slowly his smile has returned though and he is showing more interest in general interaction. It is a slow process of recovery each time on limited energy, as it is for anyone who has been sick..just more so for him. Some of these illnesses cause regression of skills. We work so hard in therapy and then to have one cold set us back weeks can be tough to swallow.
My Sweet Little Boy..tasting of chocolate pudding..
With the help of his sisters, Sam quickly began engaging and playing again, holding toys and wanting to be held and cuddled. He really looks up to them! One tough part of the last few weeks was noticing he sometimes was struggling with reaching and grabbing at times.. sometimes there is a shake to his hands. I know I should not over-analyze it since he had just been through such a taxing weekend and winter season, but I can't help wanting to bow my head and cry with the worry sometimes.
I watched him sitting there through dinner where I put a sample of spaghetti in front of him but after unsucessfully reaching out and not able to get what he wanted, he decided to just watch us eat the rest of our meal quietly. So I tell myself..well, he is not feeling messy tonight. The girls would have had the spaghetti noodles in their hair and on the walls by the end of that meal at his age.
Later he layed quietly on his mat while Jason and I discussed the details of our day. He never makes a big fuss, just content to fiddle with his rattle and smile when we make eye contact. If you have limited energy to spare I guess you learn pretty quickly not to waste what you do have on being cranky or needy. I just have to hope that his disposition is not signs that his brain is not getting enough energy to keep growing at the necessary pace. I know how it effecting his muscles and movement and GI and heart rate etc.. but the brain is a more mysterious place. He is sooo social and so all the Drs say they are encouraged by that.
My goal for the week is to slowly get back to our old pre- health crisis routines and push him to try some new things. He eased back into doing his PT today. Slow and steady wins the race I guess. Again we discussed future equipement needs like a stander apparatus and possibly an activity chair of some sort. The durable medical equipment rep is going to meet with us soon. Not going to allow myself to worry yet about how we will pay for that stuff.
I am trying to get back into handling some of the communications/ marketing for Jason's business. Every time I get started, Sam gets sick or we are a bit over scheduled. I am excited about having set up a seminar for next Tuesday with a local support group for him to discuss special needs trusts and estate planning, guardianship for parents of children with special needs. It never occurred to me that this area of his practice would effect our own family one day. There are many families adapting to this new role of parenting a child with special needs. Many people are unaware of how their own death could effect their child's access to disability and other needed programs or how to properly make sure their long term needs are provided. There is much to consider for ensuring a secure future for them.
We realized this year that if something were to happen to us, it would be a more complex issue on how to direct Sam's care than what we already layed out for the girls. It is important for all parents to lay out a plan arranging for how your children's care and the family's assets would be handled in the eventuality of their passing. I hope to see this as an area of Jason's practice that allows us to reach out to other families and support groups facing the same uncharted territory that we face daily with Samuel.
I have quite a few prayers to lift up tonight. The first is for the family of one of the other Mito children (Abigail) whom we have grown to know through the blogs. Recently, they lost their son after a preterm delivery due to complications late in the pregnancy. Already coping with the serious complex medical needs of one child and raising their other children, this family needs our prayers. I am praying for different members of my extended family with health concerns and my sister with a big move and a full plate right now. Prayers of thanks that my other sister got through a bad stomach bug overseas alone with husband deployed and a baby.
The other prayers on my heart are for other children in the hospital this week battling infections, cancer, illness and awaiting transplants. We have met some of them through networks online and actually share physicians with a few kiddos. Somehow it doesn't matter that we have never met. I am carrying their little ones in my heart because I know what those moms are feeling. It is so unfortunate to me that it took my own son's health issues to wake me up to how many families are out there with children fighting for thier little innocent lives. You don't see them in your daily life but they are there.. and it is not as rare as you may think. They are all the sweetest little angels and you can see the love they have in their families with communities surrounding and lifting them up. I am sending up prayers for wellness, comfort and getting back home to their loved ones.
One last thought before I get some sleep..I went to upload this cute pic of Sammy in his new red shades and all I can say that crosses my mind is the line from Amazing Grace. "(I) was blind but now I see.." I think I always thought of that line in respect to the story of Jesus giving sight to the blind man but it has more meaning for me recently. I have been so blind. Blind to what matters in life. Blind to what my fammily could face. Blind to how I could be a better person and mother. Blind about what my faith should do in my life. I am only now in my thirties finally able to see certain things more clearly and I am sure I have far more to see. It is like with our newborns... We are told when they are born that they have very limited visual depth but over weeks and months they grow better at seeing color and demension and at a greater distance. It has taken me a very long time but I think I am beginning to see more clearly.
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