Wednesday, February 18, 2009

my sweet hilina

i don't know how to talk about this or if i even want to talk about this so if you come back later and i've deleted this, then you'll know i changed my mind. but sometimes i wonder if there is anyone else whose baby has CP and if they do, if they feel like i have been feeling this week. because it's just been this week that it's actually sinking in that hilina might not be ok. i guess i've always just assumed that we're doing all this therapy and she's made so much improvement physically, that everything would be fine and she would maybe take a little longer to walk and talk, but that she'd catch up. maybe have a little limp, but it honestly never occurred to me that she might not be capable of catching up completely. we've had some evaluations in the last few weeks for speech and special instruction (both of which she qualifies for) and they've been pretty discouraging. it sounds so stupid, but i'm just now realizing that she might never be able to control the muscles in her mouth well enough to speak clearly or that we won't be able to do enough for her to right arm so that she can use it just as well as her left. and with her still being so young there is still so much up in the air. because her brain injury was so severe and primarily affecting her language center, we don't know how much the right side of her brain will compensate for the left stroke area. her brain is actually re-wiring itself on a daily basis and we don't know if when it stops she'll still have epilepsy. we don't even know if the seizure medication she takes is frustrating her ability to concentrate, or if she just isn't interested in what we're trying to teach her.

when you have a child you spend hours daydreaming about them, about what their future might look like. what they might want to do, if they'll marry, if they'll be as horrible a teenager as i was... and i think very naturally i always pictured saida and hilina together. running on the beach chasing each other, covered in sand. sitting at the kitchen table doing their homework (in my head i always have a kitchen big enough to have a table to eat at!). i never once pictured judah passing hilina. i never once thought about how it will affect saida if she always feels like she has to protect hilina. because i never pictured hilina growing up differently than saida and judah. it's like my life has gone a little out of focus this week and i just need to re-imagine it but i can't because we just don't know. maybe i just need to learn how to let tomorrow worry about itself.

on a lighter note, we went into the city a few weeks ago down to my old stomping grounds in battery park. we got to watch the sunset behind the statue of liberty. believe it or not, the view of the water is the same from my old office and i don't miss it one bit.

judah's first swing!

traffic jam

i seem to be saying, 'uh a little help here?!?!'



10 comments:

Anonymous said...

Beautiful pictures. Anna, you are such a good writer. Despite having never been in your shoes, I perfectly understood what you were saying about how you are feeling...the uncertainty. I love you, am proud of you, and am sure that come what may you'll handle it with humor, grace and love. Love you sister.

kristine said...

Your posts are so personal I don't want to intrude but I felt I had to say hang in there. We have friends who adopted a little girl that at 2 years had so many unknowns, some of them similar to you. Would she ever speak, communicate well, live on her own. She's 7 now and in school. She doesn't communicate 'like everyone else' but she's so special and we are so lucky that she is a friend of ours.

The siblings are all blessings to each other. Your feelings are so natural. I hope you meet other families soon that are similar in this way, it would be a great help for you.

Beth and Ben said...

I love you Anna for telling us how you really feel. You are in my heart. beth

Cloverland Farm said...

oh anna, i'm glad you shared your thoughts and i wish i had something marvelously socialworky to say (something that would be helpful, not cheesy). what the brain can do in righting itself is unreal. i will for new neurons on a daily basis. and for you guys too.

jlarsonrn said...

Anna, thanks for being transparent so we can pray specifically. I think about you many times a day when I'm tempted to feel overwhelmed with my 4 kids under 7. You're a GREAT mom! Hilina, Saida, and Judah are blessed to have you loving, encouraging, and training them. HUGS! =)

Anonymous said...

Hi. I've been following your blog off and on for some time now. We adopted our daughter from Guatemala at 8 months. She has CP as well, opposite side from Hilina. She will be two next month and still does not walk,...actually she's just now starting to crawl. The uncertainty is frustrating and I know exactly how you feel. Our daughter also, has qualified for the gambit of services. Therapy, therapy and yes more therapy. Hang in there. Children are amazing, and with early intervention I truly believe that the sky's the limit. The brain is amazing. If you ever need to vent, or want to talk CP e-mail me, I stopped keeping up with my blog!
-Tami
tamirevel@yahoo.com

Kara Melissa said...

Some of your thoughts and feelings really resonated with me. My son is 9 months old and has CP and it's so hard sometimes. I try to be so positive all the time but there are moments or days where other thoughts creep in and it's all too much. I am amazed by you and your ability to take care of three little joys at the same time, I can't imagine having more than one kiddo with all the therapy and special things I do for my son. Please email me as well if you want to connect.

Anonymous said...

Ben & Anna,
I have a dear friend who has CP. I've only known her about 5 years & she has become very dear to me. Her speech is unaffected, but she is wheelchair-bound. She married a wonderful man, raised 2 children & loves Jesus. She has more wisdom in her little finger than I ever hope to attain. Call me next time you're in Roanoke & I'll introduce you to her.
With prayers,
Trisha

Molly said...

Anna, one of the things I love about your blog is that it has become a gathering place for people--whether they are adoptive parents, or biological parents, or not parents at all, but well-wishers. Your writing really has a way of bringing people together. I wanted to let you know that for each person who posts to your blog because he or she finds your writing informative or inspiring, there are probably 100 more who feel the same way and are rooting for you and your beautiful family. That, along with being an amazing mother to 3 amazing children, is no small feat!

Just thought your deserved another pep talk :)

Anonymous said...

Anna,

Thanks for sharing this. You are making me get teary at work which is confusing a conference room full of people ;). I have no doubt that whatever Hilina's path is it will be made easier because she has family that loves her.

KIM