we arrived back in KC last thursday, tired but glad we made it home in one piece. cole was excited to get back to school and has been doing pretty well this week. he still goes through times each day where he keeps his eyes closed saying they aren't adjusted yet....it seems to vary day to day without much consistency on when or why but we are working through it and trying to be patient with one another. this friday we will meet with the orientation and mobility specialist for the school district...we are hopeful that she will be able to offer some guidance on what we can do for him during the times he keeps his eyes closed.
on thursday may 7 cole and i will fly back to detroit for an exam under anesthesia with dr trese. it will hopefully be a short trip and we'll be coming home on saturday the 9th. we are really hoping that the dr will be able to tell us more at that time. i think they should at least be able to tell us if the ciliary bodies are functioning any better. from the appearance of his eye right now i would guess that they are not functioning too well but we won't really know until the dr looks at him under anesthesia.
brent and i continue to struggle with this...we have our good days and bad days. there are many positive things happening but it is sometimes hard to see them in all the mess. there is a song by jj alberhasky called "the silent care of mothers" it's about a mom and her son who is disabled. i have always thought that i would probably feel a lot like this mother if i had a child that was disabled. one line in particular always stood out to me...
"kenny i don't know, she said,
about a day ahead us.
it's hard to see the future
when you take up all my time."
i think this is such an honest line but one that i would not want to share with many people because it's what my mama would call "ugly". now i am thinking that every mother [and father] can probably relate to this in one way or another. for me it's not so much that cole consumes my physical time but my thought time. i struggle with seeing the good because my thoughts are often consumed with worry and concern for cole...and a whole lot of frustration with myself and any other person or object i can think of to blame for letting this happen. these thoughts make it hard to think about tomorrow let alone be hopeful about the future.
strangely, at the same time.....we are more hopeful about the future than ever before. we can see God in all of this, He is here and He is holding us close. brent and i's relationship is growing and we are closer than ever. cole is amazingly strong and happy and makes us proud to be his parents. eli is the happiest, easiest baby there is and makes us smile every day. we are undeniably blessed and we know it even when we're having trouble seeing past the "ugly".
thank you all for your prayers and support in this time. God doesn't always answer my prayers the way i want Him too but He always shows up and listens when i talk and that's enough for me.
11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." -jeremiah 29:11
3 comments:
You guys are way stronger than I can even imagine being and I admire you so much for this.
good thing God doesn't ask you to hold the future. he has it covered. really. i pray for a peace that passes understanding for you guys today. love, z's
hey summer and brent-
it's been a long time since we've talked, but I want you to know I am praying for you guys. although the issues are very different, I can relate to the struggles of having a child facing special challenges. letting go of expectations is hard but also really freeing. it's something I have to do again and again...
love to you all! and let me know if i can help in any way!! Love,
jen webster
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