SuperTonka is home!! He came home August 3rd... Since then I've had a fulltime job working on getting his Drs appointments scheduled and happening, getting his therapies started, his food that he needs, etc... there's a reason new mommies, especially of super special kids look tired... it's not always that the child care is a lot, it's that the dealing with Drs, insurance, and paperwork is OVERWHELMING!
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| Yesterday's snuggles after the audiologist appointment :-) |
I've been reminded this week how much I appreciate all these appointments and paperwork and phone calls. I have my son, he's here at home with me and doing all the things a newborn should be doing (eating, sleeping, pooping and crying!) As a mom who has lost a child, I feel even more blessed that Alexander is home and doing better than I had expected. We learned yesterday that not only is Alexander believed to be blind, that followup appointment is the first week of November, but he also has some sort of hearing loss. We aren't currently sure of the extent of that loss and it's treatment, I"m waiting on a call back to schedule that appointment.
This week, I was reminded to be especially thankful, and to love on my kids even when they irritate me beyond all belief. One of the football players at the High School passed away at football camp. Everyone reacted as they should have with medical care and treatment, but sometimes, medical interventions just don't work. I never had the pleasure to meet this young man, and I really wish that I would have. His parents, friends, teammates, coaches and church family have nothing but GREAT things to say about him, and seem to be finding peace in knowing that he has entered the presence of the Lord.
That being said... we sang a song at church on Sunday that has stuck with me throughout this week... one line in particular. The song is "Blessed be your Name" by Matt Redman... the one line that has been haunting my thoughts this week is this; "On the road marked with suffering, Though there's pain in the offering, Blessed be Your name." What a reminder. That God already knows what we're going through, He's just waiting for us to praise Him anyway. When we don't want to, when we can't always tell that He's near, when the rest of the world thinks we should be falling apart and inconsolable and at the end of our ropes, God is there. He's waiting, for us to praise Him, even when it's hard. Even when we have to CHOOSE to praise Him, when all we want to do is question Him and His purposes.
I'll admit it, I'm not perfect. There's moments, especially in the last few weeks that I want to question God's purpose and plan. Why should any child be born with an incurable disease? Why isn't there more funding for research for that disease? Why are the possible complications of the disease so heart wrenching? Why does Alexander seem to have so many issues on top of the Hydrocephalus? Why did God chose US, weak, unknowing, generally overwhelmable US to bless with such a special child?! It really has had to be a conscious CHOICE to continue to praise.
Please, pray for us. Pray that we will continue to see the good in all things and continue to praise. That we will follow God's will and claim His promise that ALL things will work together for good for those who are called according to His purpose. (Romans 8:28)
