Thursday, February 25, 2010

In The Moment

It has been an exhausting week here...physically, mentally and emotionally. I guess I should clarify and say more exhausting than usual. I have determined that I am in "special needs overload." I am completely tapped out of all feeling. Talking, discussing, answering questions, asking questions and making decisions all within the realm of "special needs" and all shoved into the span of 3 days has left me zapped of energy and brain cells.

Bear with me, we're going to work our way backwards here...

Thursday brought with it an appointment to order SK's wheelchair. Chad went with us, thank goodness b/c I almost went into self preservation mode on this one. Our daughter was fitted and measured for her very own wheelchair. They said it would take 3-4 months to get it in...well it better b/c I don't want it one minute before then. Don't expect to see me sporting this thing around town anytime soon, we are mainly getting it b/c she will need it for school. Do they think that getting to pick out colors and getting her name stitched on it make this even slightly tolerable? The answer is no!

Alright...moving on...Wednesday is our normal all day therapy day. We do Wet Tots at 9:00 and then see SK's OT at 10:30, so that is always a long day for us, but usually it is our only long day of the week.

On Tuesday of this week Sophie Kate and I had some appointments downtown at Children's Hospital. Nothing out of the ordinary just 6 month checkups with some of the doctors and clinics. We were there from 9:30am until 2:00pm...exhausting. We were talking to therapists, nurses and doctors discussing everything from SK's therapies to medicines to gtubes. Thankfully we ran into 3 different people that we knew and they helped to pass the day while we were waiting.

It's a difficult day to sit in the waiting rooms at Children's Hospital. I see all these parents and children and I wonder...are they here awaiting a diagnosis, are they first timers to Children's or are they regular attenders and on and on I go. I admit it's kind of a warped form of people watching, but sometimes you get to share in a moment that will stay with you forever.

As SK and I sat waiting to be called back for "our turn" in clinic 1, I spotted a father and son across the way waiting for "their turn" in clinic 2. The child sat in his wheelchair with his father sitting beside him. The child had a trach and was obviously non verbal, but that did not stop his father from having a conversation with him. The child was also gtube fed (like Sophie), I knew that b/c I recognized that same black backpack that we carry around containing SK's feeding pump and formula. I then saw this father take out a small towel and ever so gently and lovingly wipe the saliva that had started running down his son's chin. This took place several times and sometimes the father would wipe his son's chin and then sometimes he would place the small towel in his son's hand while he assisted his son in wiping his own chin. I know y'all may not be thinking much about this b/c so many of y'all know that I never leave home w/o one of SK's burp cloths...we are forever wiping SK's mouth and I know that y'all have seen us do that and no one would think anything about it. The difference here is that this boy was not 2 he was probably around 12 or 13, puts a different spin on it doesn't it?

What a beautiful display of love. It reminds me of the song "How He Loves Us" by the David Crowder band. There is a line in the song..."When all of a sudden, I am unaware of these afflictions eclipsed by glory, And I realize just how beautiful You are, And how great Your affections are for me." Oh Lord that I would allow these earthly afflictions to be eclipsed by Your glory. I saw that on Tuesday and that father and that son have no idea what an encouragement they were for me. Y'all, His affections are so great for us.

Psalm 97:6 "The heavens proclaim his righteousness, and all the peoples see his glory."


Kristi Manning said...

i am a regular reader of your blog. My daughter will be 2 next month. she had a brain injury at birth , so we are dealing with a lot of the same things that you are going through. I just wanted to let you know that you are such an inspiration to me. a lot of the emotions that you express I totally understand. I can't really express in words what your blog means to me. It helps me alot and i thank you.

Amye Jo said...

Kristi, I so love connecting with other moms. Thank you for your kind words. Are you on the HIE yahoo group? Birthdays are a hard time of year, I will be thinking about y'all as you go through that, what is your sweet girl's name?

Specks said...

This is so beautifully written~ thank you for your words! I too, can relate to so many of your feelings, especially those about the wheelchair & waiting rooms. Sophie Kate is such a doll!

Kristi said...

My angels name is Autumn Gabrielle. We call her Gabby. I am not a memeber of the yahoo group, but I will check it out.