Wednesday, August 27, 2008

A different sort of view...

To earn some extra money (something we are always trying to do) I've been watching a 2 1/2 year old and an 8 month old during the evenings (their parents are in the hotel business and have to work extra duty b/c of the DNC). First of all I now have a new respect for trach families who have other children. I cannot even fathom how they manage to take care of multiple children and a child with special needs. Hats off!

A few months ago I wrote a post about how having a typical child scared me. I now know how right I was. I grew up babysitting. At 16 I always had a bay on my hip. Feeding, burping, diapering, all came natural. I was always proud of my experience and knew how it would help me down the road when I became a mommy.

A year ago when Faith inherited all of her extra hardware everything was so foreign. There are still people in our lives who cannot wrap their minds around the concept of a g-tube ("What do you mean she doesn't eat?!") Last night when it was time to feed this little 8 month old baby I put a spoon into his mouth and he ate it. It freaked me out. I looked at Brian..."what do I do next?" I tried again..he took another bite. Later on Brian gave him a bottle. We watched in awe as this little boy just sat there suckling....later Brian confided in me how we was also scared. Boy, how things can change!

It never fazed me that this little boy ran circles around Faith. At half her age he is doing things far beyond her physical and cognitive level. At this point that's to be expected. What did make us a little sad was the way his eyes moved. When people come over to the house for short visits they often say, "What do you mean she can't see?! She is looking!!" We won't deny this....but the way Faith sees is far from normal. When Brian was holding this baby I noticed how his eyes focused on things across the room. He watched his daddy drive down the street, he seemed to study details of people's faces... it was just different. Lately it seems like Faith's left eye has been glossing over. Like the way blind people's eyes look.

We are far over the comparing baby game. It's something parents love to do. As special need parents we learn very quickly it's a game to be avoided (not because you don't want to talk about it but because you just have bigger things to worry about). But when you someone else's child doing something that should be a God given right, something like being able to see, it just stings deep. It's not envy, it's just a different type of pain that only those who have felt it can describe.

This is something I don't think anyone truly understands unless you have a child like ours. We don't expect people to understand...we don't expect people to know what this is like. Sometimes the words the mean the most are..."I don't must be really hard.."

I'll end this post on a positive note. Last Tuesday after Faith's occupational therapy session we went through the motions of saying goodbye. Waving has been a long term goal for Faith, something she has been unable to do. Her OT always sings a goodbye song then waves her hands at Faith while exaggerating the movements. Week after week we go through this routine, however this time Faith look her little hand, raised it up and moved her fingers. We'll take it! Three witnesses all agreed that could have been a bye-bye. She repeated the movement again. but has yet to repeat it since then. Her OT comes again tomorrow, maybe she's the winning ticket. And if she doesn't, that's OK. At this point we'll take whatever we can get!


Marissa said...

God Bless you my friend. I respect and admire the way you deal with things in such a graceful way.
You and I are part of unique group of people who can see things from both sides. I too have felt that pain you speak of. We long for the "normal" experiences, but cherish the small triumphs that others may take for granted. What Little Blessings our girls are for teaching us these lessons!

Yay for Faith waving! AWESOME!!


Anonymous said...

My sister in-law has 2 boys who see, eat and walk and talk, but both are autistic and will never be "normal"- everyone has their unique journey and own pain- some are more easy to identify and visible than others. I am glad you have other moms who have walked in your shoes because you are right that we on the outside will never exactly know your loss. We will also not be privy to your joys and blessings. We all have our own chanllenges. We are thankful you take the time to share some with us. God bless --Libby in Miami

Dana said...

Goodness. I hate that the pain of what should be is there for you as well. I take comfort in how Laneah handles it. She is on target coginatively for her age. So she has to see/understand what other kids are able to do. However, when her 8th month old cousin is trying to walk and crawling (and supporting her own head since one month)---She is saying "Yea, Alayah" (literally). If it's o.k. in her eyes than who am I to feel sad for her/myself.
These kids understand more than we do. They are more comfortable with their limitations than we probably understand. It's different if it's all they know.

Look at how strong Faith is because of her limits. She will be stronger. She keeps trying to figure out this world we live in the way she knows how. Keep up the good work Faith.

Anonymous said...

Well, how did the waving bye bye go??

You guys, all of you, have been through so much and you have also come so far!

I know its hard for you when you see other kids doing things we hoped our little ones would do but it isnt her time ..YET! But it will be as she has shown us ALL before!

Faith has proven to us over and over again when SHE is ready...she does things.

SO I sit and wait and KNOW that she will be doing things that other children will see and I KNOW you all know that..its just tough at times! =)

Give that sweet angel a HUGE kiss and SQUEEEEZE from her Aunt Susan!

I sure miss her =(

Aunt Susan, Uncle Mike (Home yahoooo!)Steve, and Michelle

Dana said...

i miss your posts about Faith. What is new with you guys? Hope to read something new soon. take care

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