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."

Monday, February 22, 2010

Happy Day

Our girl has been so darling. I am just lovin' this time in her life and it is not b/c she is accomplishing things that we never thought possible. It is b/c cause she is so happy...she is enjoying life and consequently those around her cannot help but enjoy life too.

She is showing her sweet personality more and more. We know what she likes and more importantly we know what she doesn't like. We have a schedule that we can all live with and we have a precious daughter and sister that we want to be a part of everything we do and the great thing is that she wants to be a part of everything too.

My mom likes to talk to SK whenever she calls and this was just one of those times...

Girlfriend comes from a long line of talkers, I know her Mimi would be proud...

Look at that face...

Sister wants to do and experience everything everybody else does and I forget that sometimes and there she sits on the sidelines. So when I see things like this it reminds me to get her out there and get her involved in life as much as I can no matter how small it may seem to me, it's a big deal to her.

Psalm 16:11 "You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

Wednesday, February 17, 2010

Sister's New Chair

We have been looking for a chair for Sophie Kate for when she is just hanging out and kickin' back in the family room. We have her purple Special Tomato chair, which we love, but it is mainly used for therapy purposes. It's a chair that makes her sit up properly, it has a five point harness and a tray that goes with it so that we can put toys on it for her to play with.

It's a great chair but we were looking for something a bit more relaxing and this is what we came up with.

Her very own papasan chair...

Although this is what has been happening every morning after the big kids go to school and I turn cartoons on for this guy...

And then sometimes he's nice enough to share her own chair with her...

So sweet...

I'm not completely sold on the chair yet, we are still giving it a trial run. Sometimes she sits a little funky in it and it doesn't look like she's comfortable at all...

And then sometimes she looks just as comfy and snugly as can be.

Oh to be able to sleep that kind of sleep again. Alas, I think it may be gone from me forever. Can you hear the jealousy coming through yet?

Monday, February 15, 2010

Our February Snow

We had a ball last Friday enjoying our 2 1/2 inches of snow. It snowed from about 9:30am until around 3:30pm, which is almost unheard of around these parts, but it was beautiful as it was falling.

It doesn't stay beautiful and unspoiled around here for long when 3 boys hit the ground running...

I love this one of Cooper...

Watch out G-man you're fixin' to get it...

I don't even know what this is...a Jacob size snowball maybe or the beginnings of a gigantor snowman?

This boy loves life, his smile and his laugh are infectious...

I took a couple of videos of the boys playing in the snow...

SK did not venture out in the snow that day. She is so over it. It has snowed like 4 or 5 times in her life, it's really not a thang to her anymore and she prefers her flannel pj's and a warm cozy house over wet snow and frigid temperatures any day. I won't leave you hanging without a picture of our girl though, here she is in all her warm, smiley, happy glory...

Thanks for checking in on us.

Thursday, February 11, 2010

A Relationship Without Words

A relationship without words...what does that mean, what does that look like? My answer is less than stellar b/c my answer is that I'm not sure. I feel like words fill up too much time and space as it is. My words, you know talking...just talking all the time. And if I'm not talking then it's the TV or my ipod talking. Maybe I should change that to seems like all the time I am surrounded by noise incessant unnecessary noise (and I am not talking about my boys, that's a story for another post), but seriously does it feel that way to you too?

In talking to a friend recently while hashing out some of my feelings and emotions, she said to me "you need to take all of this to God." You need to tell Him how you are feeling...your anger, hurt, pain and fears. My response to her was that I already had and that I already had a bunch of times. Well, she said, then maybe it's time that you be quiet and listen...ouch!!

That is one of the hardest things for us, isn't it? Even when I get those few and far between moments of quiet, I find myself at the very least turning music on. What might happen if the silence remained and the noise wasn't allowed to intrude upon it? It's just another thing God is teaching me through my girl.

You see, she is no more happy than when we are just spending time together. She wants my time, my love and my attention. It is a relationship that has been cultivated over time. There are not always words exchanged but there is a relationship there nonetheless.

I have never heard the audible voice of God, but a relationship exists there as well and He is very much alive and active in my life. I only have to get out of bed each morning and go to rouse our brood out of their beds to see his blessings firsthand. The beauty of His creation can be seen in my little girl's smile. The depth of his unspeakable love for us can be seen in what He endured for us on the cross and the victory we can live in everyday is seen and celebrated in His Resurrection.

There do not have to be words but there is an assurance that "Jesus Christ is the same yesterday, today and forever." (Hebrews 13:8)

Psalm 46:10 "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth."

Saturday, February 6, 2010

Baby Be Blessed

Sophie Kate got a new doll this week. I had actually ordered it well before Christmas knowing that it would be after Christmas before she would receive it and then I forgot about it. So it was like a little after Christmas surprise when it arrived this week. It is a Baby Be Blessed doll.

You get to pick out the kind of doll you want along with hair color and hair style as well as the colors you would like for your doll to be dressed in. I just had to pick the pigtails b/c they reminded me of SK so much.

On the tummy it has SK's name stitched in along with her life verse Zephaniah 3:17. The card that was included with the doll says that there is nothing special about the doll, but there is something special about sharing the word of God with your children from a young true.

I'm pretty sure SK thinks she's a keeper!

Zephaniah 3:17 "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."

Wednesday, February 3, 2010

Who Am I?

Who am I that God saw fit to make me her mother? Who am I that I get to spend my days and nights with her? Who am I that I get to share in her sweet smiles and happy days?

I am nothing special, not like she is. I am a sinner albeit a sinner saved by grace but nevertheless a sinner. I have not ever done anything to make me worthy of the complete trust she has in me.

She requires so little to be, water, her medicines and a comfortable place to sit or lie down, those are just the basics. Then there is sharing the love of God with her, spending time with her and giving her some TLC whenever and wherever it is needed.

I am not her teacher...she is mine and there is so much to learn from her if you will allow yourself. She's a perspective changer and a priority organizer. She has taught me not to take her brothers for granted. She is teaching me about having a relationship without words. These things must sound familiar to you if you are a believer and follower of Jesus Christ. I believe He is teaching me all these things about Himself through her. God reveals Himself in our circumstances and in our surroundings and I can see the hand of God in my life everyday if I will just let go of the fear and open my eyes.

She is teaching me to love without expecting anything in return. Who am I that I get to share in her life?

Psalm 45:11 "The king is enthralled by your beauty; honor him, for he is your lord."