Tuesday, June 29, 2010

CdLS conference

Deep breath. We're back.

Josh and his mom and Emma and I spent the past 6 days down in Dallas at the national CdLS conference. Around 130 families traveled to be a part of this time of learning and sharing.

I still am not sure I'm going to be able to find the words to describe it.

At first, it was like an ecstatic family reunion as I walked into the hotel and one of the first people I saw was a dear blogging friend who I had never met but hugged like a long-lost sister. In the next 24 hours there were lots of shrieks and hugs as many of us 'met' people for the first time that we had come to know and love through this strange internet world.

And that part was great.

And obviously the learning was valuable.

But I'm not sure how describe the overwhelming waves of emotion that are still washing over me as I think about the sea of CdLS faces I was surrounded by this weekend.

First, I think it's ok to say that I am grateful for the struggles Emma does NOT have ... but that's not the primary emotion I felt.

I think I thought I was past the 'comparison' stage. I thought I had accepted the fact that Emma will be Emma and no amount of comparing her to another child with CdLS will give me any more information about the future than I already have.

But as we walked through the hotel lobby and the meals and the seminars ... I felt like I was at a horribly rigged buffet ... sessions and classes on behaviors and autism and sleep disorders and seizures and financial planning for Emma's future ... I felt like I had walked up to a buffet table and the waiter had told me, "ok, you have either self-injurous behavior or lack of communication or destructive teenage night waking or .... but you can't pass on all of them"

And then, of course, there's that awful phrase ... "mildly affected" ... or is it "moderately affected"?

I couldn't find Emma on that continuum. I didn't want to even try, I knew that it wasn't going to do any good to try to label her, but I couldn't help it. I knew there was a spectrum. And as I scanned the crowd I knew I could find someone more severely affected and I knew I could find someone more mildly affected, but I really bothered me that I couldn't look objectively enough at my child to zoom in on somewhere in the spectrum where I could say that Emma might belong. Am I still in denial about how affected she is? Or am I not willing to hope for a more mildly affected child? Why can't I find her?!?!?!!?

I did find someone who said the magic words, "She reminds me a lot of my daughter." But then when I asked follow-up questions, her husband asked me how old Emma was. I answered him and he gave me a knowing grin and said, "you'll get past the comparison stage soon."

sigh

The nights were great. A group of us with younger kids stayed up WAY past our bedtimes every night talking. I love these people. I loved being around people with whom I could discuss really intimate fears and struggles and triumphs related to Emma. I miss them now that I'm home. We joked about wanting to find a Hawaiian island and start CdLSville.

Maybe here's the problem: Taking life one day at a time and trusting the Lord with the future is exactly appropriate for me right now, Biblically and otherwise. So I let go of my worry about the future quite awhile ago. This conference was about all the things we could do to maximize Emma's future potential, which is good, but it yanked me out of my focus on the here and now. Maybe being literally face-to-face with my fears for the future knocked my focus out of alignment and I'm having trouble getting back into my groove.

Most of my time spent there was warm and comfortable. This is a special community with a special culture of accepting folks into the family. I feel very confident that I could call any of them at 3 in the morning and they would listen to me cry.

By the third night, there was a little girl who played peek-a-boo with me who will never know the balm her smile was to my soul.

I don't really know how to end this post. I can't think of a way to sum it all up. I usually like to end posts up-beat because I really truly DO have a positive view on life. And I'm not specifically SAD tonight while I'm typing this ... just still a little overwhelmed. Blessed, loved, and happy to have gone, but overwhelmed.

Monday, June 21, 2010

random thoughts

nothing profound to say today

cried in church yesterday at videos of a father-daughter dance our church hosted. as much as i love Holland, i think there will always be little moments of mourning the loss of Italy. emma will go with daddy someday, and even though it will be different, it will be wonderful.

i'm sure i'll have more to say next week. ;)

we had a good father's day. i'm so blessed to be married to a man who only wants to spend time out on the deck with us eating burritos and then playing frisbee.

been thinking a lot lately about how we portray ourselves out here on the internet. i was described as "conservative." HA! so not true! not sure if i want to post about that or not, but the post i'm writing in my head is a good one, so stay tuned :)

emma's face is much much better and her ENT this morning said her tubes are open and ears are not, at the moment, infected.

charlie might be giving up his nap. he's fast asleep now, but yesterday he just sang to himself in there for naptime. i'm actually looking forward to this change because i miss my little man when we're so busy with emma stuff.

had a great weekend with my family. busy. now i'm exhausted.

banana bread is in the oven :)

have a blessed week! i'm pretty excited for mine! :)

Tuesday, June 15, 2010

Hi!

The summer is ramping up and we're going to get busier and busier, so I just thought I'd check in.

We are doing just fine. Emma is tolerating her feeding better than she has in months and the hearing aids are going very well, also. She's still convinced that she needs to be carried much more often than she really does and she's still attached to my hair more than I'd like, but she's MUCH better than she was.

Charlie is doing a lot of "checking in" with us lately. Randomly pausing in his play to come up and tell us that he enjoyed reading books with us after nap time and then going back down stairs, that kind of thing. I think he missed "normal," too, and he's soaking up family time. He's being very sweet to everyone and I am so blessed that this little intelligent, tender-hearted, well-behaved boy is my Emma's big brother.

Life is good and God is great! :)

Thursday, June 10, 2010

go, go, Emma!

She's back to practicing some fun skills.

Tonight was a lot of fun, actually. She's getting much more communicative. Or maybe I'm learning to "speak" Emma's language. I don't know how to describe it other than to say that tonight, there was ABSOLUTELY communication going on between a Bear and her Mama. Most of her "signs" are not ones I've taught her, many are just sort of gestures that I've learned have meaning, but I think she has started to really understand that she's being understood. She still doesn't understand me when I talk, but when we play a game and she communicates that she wants to do something again and then I do it again, she gets a very satisfied smile on her face.

And then we have the gross motor skills:

I'm pretty proud of her! She's not quite strong enough to push the cart without a little help, but she's doing great.

And now that the tortures that we were having to do for illness recovery are over, I got caught up on all the other tortures I'd been avoiding. Eyebrows, fingernails, toenails, button change and HAIRCUT:

And yes! She's finally well enough and recovered enough and finished with drops and everything and she can FINALLY consistently wear those hearing aids! The biggest difference I noticed today was that Charlie's "outside voice" kind of scared her. He was telling me today about some bad guys he was hunting and the "RAARRRR" made her cry. She's tolerating them very well, though.

So life is back to "normal" :) Things are, in general, going much better around here, THANK GOD!

Tuesday, June 8, 2010

Charlie's bedtime prayer

Teaching a child to pray is hard, I'm learning. But so joy-filled! :)

Charlie prays spontaneously pretty often, and he does it off the top of his head and from the heart. He thanks Jesus that he got to go on a bike ride with Mommy or that he got to eat 'stacios with Daddy and prays that Emma feels better. The only part of the prayer that we have taught him to say is that at the end of any prayer (including when Mommy or Daddy pray) is "We love you, Jesus, Amen!"

Tonight at bedtime Charlie thanked Jesus that we got to play with beans and that Daddy got to come home for a little bit before he went to his meeting tonight.

The end of his prayer was, "I love you, Jesus! I hope you have a good night up in heaven! Amen!"

LOVE the prayers of a Charlie

PS - we read the story of Pentecost as his Bible story after this. his choice. draw your own theological conclusions :)

Monday, June 7, 2010

Happy little girl!

It's so nice to have my happy Emma Bear back!



Not that she's back all the time, mind you. She's still pretty sure she's sick enough to desperately NEED to be carried around all the time ...



And her face is MUCH better, but still not completely recovered. If you look at the creases around her mouth, you can see her left cheek is stronger than her right.



And you know how most kids at some point "attach" to something, whether it's a blankey or a dolly or something? During the past two weeks when Emma really did need to be carried around because she was as limp as a rag doll on my shoulder, she "attached" to MY HAIR!


She honestly gets quite upset if I have the audacity to pull it into a pony tail or something! Oh, Emma Bear. That's a habit we're going to need to break you of quickly!



But she's happy ...



































So I'll take it! :)

Wednesday, June 2, 2010

letting myself

when the doc says it's time to take emma to the er, you go into "get it done" mode. adrenaline kicks in and you stay cheerful for charlie, speaking in code to someone on the phone who is going to come and watch him while you take his sister in.




when the nurse gets you to the front of the line to get emma into a room right away, you are in "information" mode. when did she last run a temp? when did she last poop? how much has she had to eat today? is she on any meds? you might take a moment to be amazed at all the information that is coming pouring out of you, but mostly you just want to get it all correct.




then emma is checked in to the hospital and you go into "advocate" mode. she pulls out her iv on her hand and you tell the nurse that she has sensory issues and it would be better if she can just have a shot once a day. the nurse is concerned about hydration and you suggest mixing pedialyte into her formula. you barter. you get bossy and tell them that a blood pressure cuff is more trouble than it's worth because even if it does work you won't believe the numbers because emma will be so worked up by then and it's just in everyone's best interest to let her sleep. in general, they are kind and listen and it keeps you polite enough not to be considered crazy.




when the doc says it's time for surgery, you cry a little from stress and lack of sleep, but you quickly pull yourself together and go into "learn as much as possible" mode. you lean on your spouse and pull strength from them, but you know you can't fall apart just yet because your brain needs to absorb more medical information soon.




when you get to come home, you go into "informing others" mode. this is hard when you don't understand all the answers yourself, but in general, family and friends are supportive and wait patiently to understand.




when charlie comes home, you go into "new normal" mode. this is a stretching of sorts. explain it to the 3-year-old in the simplest terms you can and don't cry when he suggests you pray about it. carry emma around when she wants it. get all the medicine in somehow. leave post-it notes all over the house because you know your brain isn't going to hold all the information that it usually does and you don't want to be "that mom" who isn't responsible enough to even return phone calls anymore because "well, you know, emma stuff"




then a few days later. today. you let yourself unpack it all. my daughter's face is partially paralyzed. probably temporarily, but i HATE the word "probably"




this sucks. and it's ok to say it. the world isn't going to fall apart if i admit that i'm not ok with our current situation. we have an appt on monday during which i will go back into "fix it" mode. but tonight there is nothing i can do.




and i trust you all know me well enough by now to know that this isn't shaking my faith and i do always know that God is good all the time.




so i'm going to just say that this sucks. we've had a rough couple of weeks. she's smiling again, but it's a half-smile that might just break my heart.



but mostly she's a little fussy. particularly when she wakes up. if you look at the right side of this picture, you can tell she's crying. the left side of the picture (her right) is the droopy side.



and this is the morning meds. not that she minds taking meds (thank God for a mickey button!), but the ear drops are torture.

in fact we have been doing so much "torture" that i can't bring myself to trim her fingernails. they are getting so long, but i just can't do one more thing to my girl.

and i have decided that i'm letting myself admit that this just sucks. it will be ok. but there are definitely things right now that just suck.

remember kindergarden cop?

It's not a tumor!

Whether you say it like Arnold or not, we're thrilled to report that whatever IS going on with Emma's ears and face, it's NOT cancer :)