Greetings to this New Year! We have been busy enjoying this new year with school, snow, cutting wood (always delightful to spend a winter afternoon surrounded in the woods with these boys!), hanging out with our bestest friends at co-op, and watching Nate gradually feel better!
The shots seem to be working slowly but they are helping. We are working on the prednisone wean now and can't wait to have my little skinny boy back. He has been such a super trooper through all this. We have given him as much control over his medical care as he is interested in helping with. Our routine begins with mama fetching the shot from the fridge about 15-30 minutes before it is time. Then about 10-15 minutes later, I'll have him start the icing of the area. We switch limbs daily rotating around his body like a clock. He picks the "fatty area" to ice. I start getting the bandaid (we use the little dot bandages), alcohol swab, and cotton ball ready. The chocolate also comes out of the freezer! Very important- do not forget mama's chocolate! (You didn't think that was just for Nate did you?)
After we are both ready, I check his icing job. I swab the area and let the alcohol dry. Another very important detail! Then I make sure I have the needle turned right so that entry will be smooth. He counts to three. I poke and he counts to 10 while I put the medicine in, it usually only takes to 7 to get it in. He pats with the cotton ball and I put on the bandaid. Then there are hugs and repeating of our theme verse - I can do all things through Christ who strengthens me, and then a thank-you to Jesus for helping us.
I made the Nate parts of this bold so you could see better how much he helps and manages his care. Nate has always been very interested and active with his labs, infusions, and medicines. This is his life and someday he will have to care entirely for himself. I can not stress how important it is for kids with chronic life diseases to enter into that medical world with you.
We have had lots of discussions about our frustrations with this disease, with God (yeah we talked about how we weren't too happy not to have an all out healing- how can you expect a kid to feel any different about that), about the long term things, about medicines, and about how his body works (or maybe it is the lack of working) differently than other kids. We have talked about how if he had never had this disease or if it had gone away and never come back we wouldn't have had such great mama and little boy together time. We wouldn't have had so many feverent prayer times together, where we cried and He heard us but was quiet. Nate wouldn't have been the old soul that he is- aged beyond all his brothers and peers. He wouldn't want to grow up and maybe (big maybe) be a doctor. He might not have had such a heart for missions and especially hurting people.
When I think back on all that we have gone through, I would not have traded that for perfect health. You might think that harsh but I can tell you that going through trials and suffering brings you to a crossroads. You either reject the Lord for treating you this way (how dare He! doesn't He know who I am) or you embrace Him knowing that He has found you worthy. Worthy to pass through the waters, worthy to trust Him in the silences, worthy to suffer and doubt, and then ultimately fall on His grace alone to sustain you. The hard truth is that my and Nate's acceptance or rejection of God won't change his arthritis. It is here. Those kids with the cancer at Riley will still have it. Suffering still happens.
I asked God for JOY this year. I have had such deep difficult personal issues to confront this last year- that I am officially sick of all of it. So I asked Him for JOY and He has blessed me with it. We are laughing our way through school with static shocking episodes, watching silly movies, great ironic moments that only God can give, and birds filling our feeders each morning for me to watch and study.
And now- of all the really funny things God could do or allow me to do- I have a black eye from a middle of the night excursion to get coffee going for Mark. Note to self: allow your body to fully wake up before staggering around the house in the dark. Yes Mom, it is black and blue. Well now maybe more of a lovely purple shade. And yes, I am going out in public with it. I went to co-op on Thursday- the day it happened, to a friend's house with our co-op group again on Friday, and am thinking of going to the zoo today for their winter day. God just thinks it is hilarious I think to put me ( a rather shy creature) in some unusual spots and watch me in action. I'm thinking of embracing it now and posting pictures of all this silliness!
So I have picked Joy from His hand. And I'm going to hold on tight to it. I'm letting go of resentment, frustrations, and worry and burying my sorrows in Him. I'm so tired of looking around and finding few that will acknowledge the TRUTH (hint for the next blog) and many hiding behind masks and denial. I'm going to venture out into this crazy world bare and vunerable just the way my Master came. And just maybe I'll have time to blog about it!
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