Sunday, June 10, 2012

Some exciting stuff!

Charlie has been riding rear-facing in a Sunshine Kids Radian XT.  I only ever considered this seat rear-facing for her, because it installs very upright when forward facing.  It has a recline option, but it only reclines it a few degrees.  Well, on a whim I decided to try her in it forward facing and imagine my surprise when she sat *beautifully* in it!  I mean I was SHOCKED!  She did drop her head once, on purpose because she needed to drool, but Adrian noticed, picked her head back up for her and wiped off her face and arm.  He's such a sweet brother.

 I've decided to start using the cloth g-tube pads around her trach as well.  I'm sure it's against the "rules" as they can't be properly sanitized, but we do make sure they get very clean and so far they work better than anything else we've tried. I've also been wanting to try things other than the disposable trach ties we get so I found some extra wide shoelaces in fun prints for $2 each.
Here she is wearing both:

I'm ok with the shoelaces, but not thrilled, so I may try to sew some velcro trach ties.  It just seems incredibly wasteful to throw these away every few days!  I'll post more when I figure out a good way to make trach ties.

And here's Charlie just being pretty in purple:

Adrian has been doing a LOT better in writing.  It was the only subject I was worried about at all. I know part of it may be because I have high expectations of him, but he just seemed to struggle SO much!  Well, he's finally getting more confident and letting go of the feeling he needs to be perfect all the time (seriously, it upsets him that he can't write as well as J.K. Rowling!  He's 7!) and he's finally getting some thoughts on paper.  Here's some examples of his writing, keeping in mind that I DO help him with spelling (he hates writing any words misspelled).

Pretty awesome, eh?

And this is what kids do when you don't give them real Pepsi...they make their own!  It has a straw and everything! LOL

And a little story about me finding the positives in less than desirable circumstances:

The other day I was going through my photobucket account and I came across this picture:

It's a picture Adrian drew of Charlie before she was born.  A few months before I had her I got it in my head that I needed to see what Adrian thought of the baby.  He wasn't very verbal so I couldn't just ask him.  So I asked him to draw a picture and that is what he came up with.  I remember being very impressed and very proud of my little guy.  I'm sure it was a coincidence that he managed a very decent representation of an approximately 8 week embryo.  What really struck me were the circles.  I imagine this is what he pictured her temporary home to be.

I posted it to Facebook, very proudly.  Then about 5 minutes later it hit me.  The feelings and emotions I have any time I think of that perfectly happy time before she was born. Before "IT" happened.  Before our world was turned upside down.  Before our perfectly healthy baby became a very unhealthy one.  Oh, it hit me HARD.  I sat there and cried and cried for like half an hour straight.  I knew I needed to pull myself up out of my little depression, so I got up and away from the computer and made Charlie two washable chux pads for her bed.  It worked, and I felt better.

Later, I posted it to an HIE facebook group I belong to and talked about how the picture brought back those emotions and how it surprised me because I hadn't felt that way in a long time.  A few people commented that it actually gave them hope that they wouldn't feel that way forever.  Their children are younger, some infants, and they are still shaken and vulnerable.  They didn't know they would one day be totally happy again.  I gave them a timetable of how I felt emotionally during Charlie's life.  How the first 2-2 1/2 years were very difficult for me, then I started to accept everything and how the last 6 months to a year have actually been....well, really good!

And that folks, is how in a matter of hours, I went from fine, to really sad, to better than I was before.  I realized that for quite a while, I have been HAPPY.  Charlie will never be totally healthy.  She will always be disabled.  And she will most likely leave us all too soon.  But I've been looking PAST all that and just focusing on the here and now.  And her here and now is pretty darn perfect.  She's the most amazing child and I'm incredibly lucky to have her.  She's not a burden like some people think.  I'm not a "saint" for being a good mom to her.  I can no longer let people pity her, or me.  I know some people do and I really need to be more vocal about this.  Our lives are GOOD.  Even when we're holed up in the hospital and I'm stressed out, I've been blessed enough to have friends want to visit and I can even treat it like a mini vacation, just me and Charlie snuggling in her room, playing on the iPad, and eating bad food.  We have awesome nurses who take care of her so well I never have to worry about her.  She has a ton of friends of all ages who would do anything for her.  One of her little friends said she wished Charlie could be HER sister.  I told her she could be, certainly!  I told her Charlie was her honorary sister.

Do not ever pity any of us.  We have tough times, but so does everyone.  I'm not a supermom.  No one should ever look at me and say, "I don't know how she does it...I never could!"  What I do isn't as hard as everyone thinks.  And Charlie is SO worth it anyway!


Anonymous said...

I just love your blog! Thank you so much for sharing your thoughts and life with us. You have me crying here tonight! The emotional journey you've been through really is amazing and beautiful in the crazy way life is. I just love you and your beautiful children and reading your updates now and then.

BTW- How is Adrian doing? Any updates on his stuff going on?

Wishing you all the best...

Shauna said...

Adrian is now doing speech and occupational therapy, along with the physical therapy. He's doing pretty well, but we haven't decided if he needs braces or not, or if he'll be discharged from PT any time soon. He still needs all the help he can get! We still plan to go through the autism clinic...I just need to get the paperwork filled out and sent in. In the meantime I'm working really hard with him on his social skills. It's all stuff I never really noticed before, but now I see, because I'm tuned into it. He doing better, but has his days where everything that comes out of his mouth is inappropriate! Ha!

Shauna said...
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