Tuesday, January 17, 2006

Now We're Rolling!

The girlies had an appointment with the eye doctor on Monday. Holland is nearsighted and is going to need glasses. For those of you who know about such things, she is close to a -2.0 in her right eye, and a -3.0 in her left eye. Her eyes are also both turning in again, but very slightly, and not enough to require further treatment at this point. The eye doctor said that there is no "right" time to put Holly in glasses, and she doesn't feel that they are developmentally necessary right now. Holland is mostly interested in playing with her toys and looking at things close up. As she gets a little older she will start wanting to see things further away, and will be more apt to want to wear the glasses. So, we have another apointment scheduled in July, and Holland will most likely get her glasses then. All of this news is pretty much what we had expected to hear. The good news is that her retinas look good, and she is using both eyes equally, not favoring one over the other. And she can SEE. The bad news is that her eyes will likely continue to worsen over the years and she will always require glasses or contacts...until she is old enough to decide if she wants to have laser surgery AGAIN to correct her vision.

Eden's vision is better. She is not nearsighted at this time, but will be sometime in the future and will also need glasses. She probably will not need them as soon as the 6-month appointment, but maybe within the next few years. It would be nice if she could grow into her BTE (Behind the Ear) processor before we have to try to keep glasses on her, but whatever. We just do what we have to do.

Eden's good news is that she has started ROLLING! She has been able to roll from front to back, and from back to front for a while, but it wasn't until last Monday that she figured out she could roll all the way across the room to get what she wanted. Once she figured that out there was no stopping her. She rolled ALL DAY, cracking up at herself the whole time. She ended up crashing and taking a four hour nap later in the day, only to wake up and start rolling again. We are ELATED at this new development. It is so encouraging that she is mobile and able to move enough to get something that she wants. We have also been told that serial rolling is a good sign that she might eventually learn to crawl.

We were at my mom's house when Eden started rolling, and needless to say, Nana and I were both sitting on the floor bawling like babies watching her. She must think we are totally nuts.

I am not ready to concede that there is anything good about Eden's disability, but I will say this... We are certainly learning to appreciate the small things so much more than we would have otherwise.

I want to let everyone know how much I have appreciated your comments on my last post about Eden. Just writing it and venting some of my feeling and frustration has helped a lot. I understand and accept that my feelings are normal and maybe even necessary. I am going through a pretty intense grieving process in learning to accept Eden as she is, and letting go of that perfect image that I had when planning to have a child.

I talked about my goal of getting to a better place where I can be the parent that I want to be for my children, especially for Eden. I have been thinking about this a lot and I have narrowed it down to some specific qualities that I want to possess as a parent of a child with a disability. First, and foremost, I want to be strong and optimistic. I want to instill in Eden a sense of independence and determination. I do not want to feel sorry for Eden, and I do not want her to feel sorry for herself. In order to do this, I can not cry all the time, especially not when I am around my kids. I will do my best to treat Eden as a whole person, as a unique and important individual. I will not allow her to be defined by her disabilities. She may be deaf, and she may be physically disabled, but those are such a small part of who she is. She is SO much more!!!

19 comments:

Anonymous said...

Just being the person you are is the best example you can set for both of your girls!! They are both sooo lucky to have you. Luv Liz (P.S. LOVE the new pic's)

TBG said...

Thanks for the update!

You are the best mommy! Good for you and your goals I think they are great and I think that your girls will be so proud of you as they grow up!

Amy said...

Yay, Eden! Roll away, girlie!

As a teacher/assistant principal, I can tell you that your statement about Eden having a disability, but not letting it define who she is will set the tone for your daughter and how she perceives her strengths, as well as her limitations. Your attitude (& your husband's) make an unbelievable difference and will encourage her to work hard to overcome obstacles.

I love your honesty and the fact that you use this public forum to work through your emotions. By sharing, you are helping many others in your position work through their feelings, as well.

Meh said...

Oh Billie, I am crying here, I am so so so happy that Eden has become mobile, a whole new world is going to open up for her.

In what be a minute, tiny fraction of what you are going through, when Kate EVENTUALLY started moving around (not crawling mind you, but scooting on her ass like a three legged crab) I was so happy for her that her world had suddenly become so much bigger, so much more exciting.

I think your qualities you aspire to be are wonderful, perfect qualities.

I also know what you mean about not being ready (if ever) to concede that there is good to be found in the tragedy of it all. People love to try and force you to find the 'good side' of it all, the bigger plan / reason etc. As if to say 'there there, it isn't so bad, look at the bright side'. And yes, there might be a bright side, somewhere, but a terrible, horrible, sad price to pay for that so called bright side. Like Eden's disability, like Ben's death.

Sorry this has got so long.

You're doing a wonderful job in dealing with the hand you've been dealt with dignity and grace.

Your girls are wonderful, I adore seeing photos of them. When ever you post pictures I find myself actually leaning into the computer to get closer to the pictures.

Adam is going to have a hard time choosing which one is going to be his wife. Perhaps he should change to those religions where you can have two wives ;-)

big smooch to you, you are a wonderful, beautiful woman.

xxx

Anonymous said...

Hooray for Eden! Thrilled to hear she can get where she wants by herself. She must feel quite big now! I miss you, Billie,
-Kris

Anonymous said...

I hope you know my day starts with a smile when I check in and there are new pictures! I especially love the one of Holland peeking outside. Won't be long Holland and it will be spring!
I was also happy to hear that you're feeling better too Billie.
Roll on Edie...Roll ON!
Love, Mamma Jules

Jimmie said...

Eden must be so happy to be moving around!

You guys are doing a wonderful job with your girls. I deal with adults with disbailities all of the time (I do the training at my job & we have quite a few disabled employees-even a 24-weeker with CP and blindness). I don't know how they were treated as children, but I can tell you that there are big differences between those that accept their disabilities and are not defined by them - and those that feel that they are their disability. Jimmie

Kendra Lynn said...

Dear Billie and John:
I am so glad to hear about Eden's mobility! that's great! I remember being so excited when Merry finally caught on to rolling...she had to have physical therapy to learn to do it, but she did it!
I totally believe that Eden will crawl, walk and run. Keep the faith.

Much love,
Kendra

p.s. as for the glasses, there is nothing cuter than little tots with glasses...maybe they aren't fun, but they sure are cute! :)

HHH said...

Im so excited for Little Eden. I know how excited you must be. Holland will look as cute as she can be in glasses. Hallie has them and they arent as bad as you would think. She hardly takes them off but her eye is a 12, so i think she may just be happy she can see. I was excited to read your new post. Your spirit seems to be back to your positive self. Your story helps so many of us. You are such a great mother to the girls, it shows through your journal. Keep up the good work with Holland and Eden.

Heather said...

I'm glad to see that you are starting to make the turn around the corner and starting to see the light. Everyone needs to go through that tunnel of grief to the other side. I know that one day, Eden will appreciate your love and strength to help her be all that she can be.

Anonymous said...

You are an amazing person. -E

Anonymous said...

Congrats on these new achievements. Like many have said, there are definitely ups and downs and I'm glad to see you are having some more up days. You deserve them!

Amy

Kacy said...

I can't beleive how much your beautiful girls have over come- Ms. Holland standing like a big girl, and Ms. Eden becoming mobile! I wish them continued leaps and bounds over the next year and years to come. Billie if anyone can handle this its you!

Anonymous said...

i love you guys. and that's about all i have to say about that :) kisses all around.
lis

Anonymous said...

oh yeah, i forgot. i don't know who adam is, but he will have to fight aidan for those hands in marriage :) maybe one for each? as long as the new ("i aint coming out until i'm good and ready") boy doesn't fall inlove, i think it'll work. :)
lis

LynAnne said...

From reading your blog, I sense that you are an amazing woman and that you are giving Eden everything she needs to reach her full potential (and then some).

I cannot begin to appreciate how tough the last year has been for you. I’m the mother of a child with a disability, but my story pales in comparison. My son was born full term but became deathly ill when he was 2 weeks old. He was admitted to PICU and was hospitalized for a month. He pulled through but never was a “normal” baby. He had multiple developmental delays and by the time he was 3 he was diagnosed as autistic.

For the longest time I could only see how severe his delays were and how different he was from his brother (who is only a year older). I was despondent and I mourned the loss of the perfect child for many years.

Now, he’s 7 and looking back, the best words of advice I receive (though I hated it at the time) were reminders not to compare him to his brother and other children. Each and every child is unique. Celebrate achievements in the context of the child and don’t dwell on the “cannot” or the “shoulds”

Does it get easier? I thing you are very wise to realize that those words are mainly meant to comfort you. Things only become easier in the sense that they become more familiar. Each stage brings its new challenges, plateaus and achievements. But, isn’t the same true of any child?

Eden may yet surprise you. My son may never be “normal” but we found out when he started school that he is actually quite intelligent. I had let his language and motor delays blind me. I had assumed he was mentally challenged based only on his struggles. He couldn’t walk or talk until quite late, he couldn’t dress himself until recently (and most of the time he gets his pants and shirt on backwards) -- how can he have an above normal intellect? The brain is a mysterious organ.

You have two beautiful daughters – all the best to you!

Preemie Mum said...

I just wanted to say I just found your blog this evening, and all those feelings you have, are normal, either that or I'm abnormal too. I'm mum to a now 6 year old 24 weeker, who has Autism and Learning Disabilities amongst other things.

It's been a long hard 6 years, and you do grieve along the way, for the what might have beens. The if only's....still stuggling with those now.

Those small things that lots of mothers with FT children take for granted, bring huge smiles to our faces, another milestone reached.

Debby

JP said...

Go Eden! What a celebration! Your girls are absolutely beautiful and you guys are obviously doing a great job raising them. I admire your strength and resilience over the last few months. Hang in there!

Anonymous said...

You continue to astound me with your strength. My son is the same chronological age as your girls, and we've been following your story since they were born. In fact, your blog is always in the drop-down menu on our browser, because we visit so often! :) Being a mom to a normal baby is difficult enough, and being a mom to twins is even harder, but being a mom to preemie twins with such difficulties would crush anyone without the conviction and humanity that you possess. You are an inspiration and a terrific mother to your darling daughters. Seeing their faces when you post just lights up my day, even when they are not doing well. Of course, you know that old chestnut: God never gives us more than we can handle! And you, my dear, can handle it. Like a star. You are blessed.