Monday, May 01, 2006

Breaking Down

Over the course of the past year and a half I get a lot of compliments on what a good job I am doing. A lot of people wonder how I can do everything I do without breaking down. The truth is that I don't. I break down often, almost daily, and it's not really getting much better. Usually I am able to snap out of it without too much trouble, just by venting to John or my mom or one of my friends, but other times I go days just feeling sad and terrible. I'm kinda in one of those funks right now. When I am around other people, I just smile and carry one, so many people who know me might not have a clue how I am feeling. I don't talk about my true feelings often, to many people, because I know it is hard for people to understand and it makes them uncomfortable.

What's been hitting me hard lately is the permanancy of Eden's disability. I feel like I can bear anything for a period of time. I can lie upside down in a hospital bed on magnesium sulfate for days if it means my babies will have a better chance. I can spend seemingly endless days traveling back and forth to the NICU visiting my babies, part of the time not even knowing if they will survive. I can endure watching my children go through surgery after surgery. I can sit at a breastpump for tortuous hours every day to give my babies the best nutrition I can give. I can spend hours everyday trying to get them to eat so they will grow. I can drive to an infinite number of doctor and therapy appointments. I can give meds. I can do PT visits twice a week, and countless hours spent stretching and exercising at home. I can even handle the sleepless nights, the temper tantrums at nap time, and the food slinging that happens every time I want them to eat. I can do, and have done, all of these things with the hope and knowledge that it won't last forever. If I can just get through today, tomorrow won't be as bad. It will be worth it.

The problem is that it's not going to end. It's forever. She's not going to get better. There's not going to be a morning that I will wake up and Eden will not have Cerebral Palsy. And I can't stand it. Mostly I can't stand it for her sake, because it is so insanely difficult to see her struggle, but I also cannot stand it for selfish reasons. I often feel like I have lost myself. I will never be the person I used to be, or the person that I wish I could be. I'm afraid that I will never be truly happy and carefree again.

Eden's CP is becoming more and more apparant to everyone, even people who don't know her. The logistics are difficult. We have to plan ahead for everything to figure out how she will be able to participate. When we go to restaurants we bring her infant carrier in the back of the car for her to sit in, while Holland sits in a high chair. I often overhear people talking, trying to figure out if they are twins. They always decide they are not...because Eden must be younger. Unless they are in their stroller, no one really asks if they are twins anymore. Holland attracts a lot of attention, and people always stop and talk to her. Most times they do not talk to Eden. Even people who know us will generally talk to and play with Holland much more than Eden. I'm sure it is because people are not sure how to hold Eden, or how to interact with her, but it is still hard for us to see. We try to give her a lot more attention at home to make up for it. We also try to set a good example for others so they can learn from us how to interact with Eden.

I always thought having twins would be hard, and I was right. Having a preemie is also very, very hard. Having a child with a disability must be one of the hardest things life can throw at you. I suppose one of the only things that would be harder is NOT having her. Yes, that would be harder.

32 comments:

Kacy said...

Billie- You are so strong and brave to share your feelings so open and honestly. I can't imagine going through the things that you have to face on a daily basis; makes my life with a 3yr old & 1mth old seem so simple. Your girls are beautiful and just as courageous as you and John are.

rabi said...

the photos of eden always make me want to play with her. she seems so full of personality!

Tonya said...

Billie becaues I am still so new to your blog I was not even aware that Eden even had CP. I cannot claim to know how you must feel but I can imagine. I worry even to this day about Randie showing signs of some kind of disability and it frightens me to death. You hear so much about CP and Autism and all those other disabilities and it is so scary. I have a neice who has a very rare disability called Trisomy 11. She was not supposed to live a year. She is now 11 years old. She is extremely disabled. She cannot talk, walk, eat or communicate in anyway. She pretty much just lays in her crib and coos and stuff like that and sometimes she will laugh and wave her arms about :) She is truly a miracle... there has not been many cases of her disability but the oldest living person with her problem lived to be 16. It takes alot of strength, physically and mentally to deal with such issues as you do and I hand it to you for expressing yourself honestly even on here. I'm sorry this got so long.. I probably should have just came on and gave you *hugs*

Mindy said...

I feel for you hun. I have a sister in law with CP. She is now 22 years old. She cannot walk but she talks with some difficulty. She leads a rich, full life. She gives lectures in schools; she's traveled the world; she's currently writing a book. Eden still has a bright future out there. Hugs.

Heather said...

I think you are doing a wonderful job and I'm sorry that you feel so overwhelmed. Eden is a very LUCKY little girl and I'm sur you feel very lucky to have her too.

Mete said...

I want to say it will all be okay, that the future will be brighter than it seems, that Eden will show you the true meaning of courage...

While all of that is true, I really just want to say it's okay. It's okay to be sad. It's okay to be frustrated. It's okay to think it SUCKS. Because it does. It's not fair, to you, or Eden, or even Holland who should have a sister who can run around with her. It is okay to mourn that life you wanted for both of them.

But at the same time, I have to say it will be okay. I promise. It will be hard, but it will be good, too. You just have to take each day by itself, with its own unique challenges and joys. Don't look too far down the road. You never know what is waiting for you - good and bad. Just try to get through today. You'll have the strength to deal with tomorrow when it comes. I'm thinking of you all.

Mir said...

I've been lurking for a while and I am so sorry that you're feeling down. My son, 7 months old, has vision problems. For now, you can't even tell, but I'm dreading the day that we're going to have to fit him with thick glasses which tell the world yes, he is less than perfect. To me, he is perfect and I want to protect him from any prejudice.

Eden is a beautiful little girl and you are doing such a great job. I really hope that the love that you exude for her will help those around you to learn how to interract and play with her.

Good luck and our prayers are with you.

TBG said...

What a touching post!

I am so sorry I wish that this was just temporary! Eden and Holland are both beautiful girls and you are right you are so lucky to have them!

Jennifer Hanchon said...

Hi Billie-

As I just kissed my niece's sweet chubby cheeks goodnight (and she 'honked' my nose in return), I get tears in my eyes thinking of what a wonderful gift I have been given to have her in my life.

I know that you feel the same every day and you have to remember those times when you feel like you do now. Think about Eden's tiny little body and how perfectly beautiful and healthy she is now in so many ways...What an amazing thing it is that she can now hear, right? Her milestones may not be as prevalent or as numerous as Holland's, but you will appreciate her advances a bit more because of this. Life with a disability will not be easy, but if she inherited half of the determination you and John possess, I'm sure she will be an amazing person!

It breaks my heart to hear your sadness, but I know that we all have our tribulations. I can only imagine your pain, but I always try to remind myself that tomorrow is a new day and you never know what goodness lies ahead.

Keep your spirits up and know that so many people are praying and thinking of your family often...

Kelly said...

The problem is that it's not going to end. It's forever. She's not going to get better.

Hey Billie,

I've been a reader for awhile, and I've enjoyed watching your pumpkins grow. I didn't realize that Eden's condition was other than temporary. I know where you're coming from, and I know how you feel. I too have a daughter who's not getting better (even though they told us for 4+ years that she would), and that feeling of hopelessness is very palpable at times. I just trust that you'll have some really good days to offset the really bad ones. I know I have--and they've made a world of difference for the long haul.

BTW: Using the blog to vent and "cry" has been some of the best therapy I've had (less expensive too!) :)

Anonymous said...

Billie, I'm so sorry for the times when you feel worried, sad and discouraged. Your feelings sound very normal and appropriate - of course you will grieve for Eden's condition, and wish she could be just like Holland. And it's going to be hard when others compare the girls, and notice the differences, just as you do. Please don't feel badly for feeling badly sometimes!

The sheer joy in Eden's face in these pictures shows how much happiness she experiences every day, and how she feels loved and proud and excited to do new things. She looks beautiful and wonderful and so happy in those moments. She is richly blessed to have such loving and dedicated parents, and a terrific sister, and I believe she will experience a rich and full life with your support and encouragement.
Don't despair! I am praying for you and for your precious girls.
SheilaC, mom to 6 y.o. triplets

Amy said...

I don't know what to say--what words of comfort I could offer. I have been one of those commenters that have told you how impressed I am with you, your attitude, and your dedication to your girls.

What you are feeling is so completely normal, and I am glad that you have this little domain in which you can write about your feelings with honesty--another trait I admire in you.

*Hugs* to you and your family.

Kendra Lynn said...

Dear Billie:
My heart breaks when I think of how you must feel.
But I can't help but smile back at Eden's pictures...her smile is so bright, and beautiful.
It seems, that many times, people with disabilities are happier than those without.
I think Eden is going to grow into a beautiful, happy, delightful girl.
I pray that your heart would be encouraged.
I love you.
kendra

Anonymous said...

I'm so sorry! I can't truly know what you are going through, but I do have some idea. I have several disabled members in my family and I've always noticed how differently they were treated and how many times they went "unnoticed." But, it wasn't until I had kids of my own, that I realized how much pain & frustration the parents must have experienced.

I admire you for the amazing job you are doing with your girls. I know it has to be hard on you. But, like someone else pointed out...it's okay for you to feel all of those emotions. You are a normal person and should any one of us be in your shoes, we'd be feeling the exact. same. way.

Your post brought tears to my eyes. I know first-hand how hard it is to interact with children with disabilities when you are not around them all time. As hard as I try to be "normal" around my family members with disabilities, I never feel 100% comfortable. It shouldn't be like that, but it is.

Please know that you are doing an amazing job! Sending you lots of hugs and prayers!

Lindsay Bowling said...

Billie,
I am very new to your blog. I came across it on March of Dimes I think.....at any rate your story of your two miracles is absolutely amazing. Your strength and courage is amazing. We should all take classes from you how to be so strong!!
Your two girls are beautiful. I love seeing their pictures. You can tell their feistiness and their personality just but their cute little smiles. I was not aware that Eden had CP. I couldn't tell by the pictures at all. I can't sit and say I know how you are feeling but I can say I feel for you! I wish there was something I could say to make it all better but I don't think anyone can. I have a 24-weeker who is now 5 months old (1 month adjusted) and we just came home from the hospital 3 weeks ago today. He weighed 15 ounces and I thought that was the hardest thing to do..... All I can say is PRAY! The power of prayer is amazing!!!
Good luck and we'll be thinking of you often and checking your blog.
To check out our son, JACK MATTHEW,go to www.jackmatthew.com

Sincerely, Lindsay Bowling

Tertia said...

Oh Billie, I am too emotional to say much, your post really touched me.

It is no wonder or surprise to read what you have written. I think any person going through what you are going through would feel exactly the same, if not worse.

It is tough, very very tough. For her, for you, for your whole family.

I totally understand what you are saying about the forever part. It must be terrifying.

I dont have any words of advice or platitudes to give you. All I can say is that you are doing a wonderful job, and that your daughter is beautiful, both of them. And that you are absolutely entitled to say that this is all very tough.

Who knows what the future will bring. Tomorrow is sometimes just to scary to think about. I hope that your today is as beautiful and loving as you could wish for. Sometimes all you can do is think about tomorrow when tomorrow comes.

She is beautiful. So are you.

All my love
Tertia

Allison said...

Billie,

I am so proud of you for saying what you have said. And you are correct, life will never be the same and you will never be the same and for that you are better. There is a reason that you were chosen to have these twins and challenges that go along with it. You have proven that you can handle thigns jsut when you thought you can't.

People tell you what a great job you are doing because you are and many can't imagine doing it themselves. This does not mean that you have to be a rock all the time! There are many days that it just plain and simply sucks and there is no explanantion for any of it.

Your kids know how much you love them and will some day realize all of the sacrifices you have made. In the meantime, keep pushing ahead and loving them every day! You are an inspiration!

You made me cry!

HHH said...

Billie- I am so sorry that you are hurting inside. I too have the days when all I want to do is sit in a room and cry. Life with a micro preemie is stressful enough, i cant begin to imagine how hard your life is. Seeing Holland thrive and then watching Eden struggle. Even though you may have breakdowns now and again... You seem to be the best mom ever, I love reading your site and all the new things the girls are doing... I know im not there with her everyday like you, But eden seems to have made progress since the first time I started reading... Her pictures are just beautiful... Im sure sometimes things seem like they will never get better... but, they will. You were blessed with Eden for a reason. God doesnt make mistakes.... He needed a special family for her, and you were blessed to be her mommy. Life will be hard but it is also rewarding... Think of everytime she smiles at you... how you light up, how you cant imagine not having 2 little angels. I admire you strength and the way you parent your kids...Your love shines through. I will continue to pray for your family.

Anonymous said...

I can't even begin to imagine the high's and low's you and John must experience in any given day. It breaks my heart to know you are hurting, but you are one of the strongest, caring, most loved people I know. Eden will continue to have her challenges, and you will continue to help her overcome each and every one of them!! She is as strongwilled and persistent as her mommy. Remeber you and John are the main reason these girls are as healthy and as happy as they are. We all luv you and hope each day gets a little easier than the last. Luv you all Liz

Shannon said...

You are a brave woman and I know how you feel (somewhat). I hope you can find some peace with the situation because your girls (both of them!) are beautiful, wonderful little people.

David said...

Very heartfelt post, I appreciated your sharing your feelings and experiences.

Anonymous said...

Hi- I have to second another poster. You really do seem like the best mom in the world. From the time I found your post, I always asked myself how does she do it? The great toys, the super cute clothes, fun play, amazingly cute headbands and ponytais, and above all your kids seem so incredibly happy! You really do do it all. Have it all together from the inside and out. Plus, you just seem like the nicest, most thoughtful person (and mom). I'm just amazed. Even how you posted, the way you presented your feelings. You are really special. :-) -E

belinda said...

Hi my name is Belinda I have a 9yr old son with severe cerebral palsey. I am 29 yrs old and I have felt like you so many times. I feel like I don't do every thing, that I can to help him I even feel guilty and blame myself for his condition. I know you feel so alone sometimes, I break down because I watch him listen to other kids playing and you can tell he wants to be doing whatever they're doing, he is also blind,so he just listens to everyone. One saving grace that I have is He is so innocent he will never know the heart this old world can give and he gives me strength to always strive to fight my hardest. Everyone has always told me that God only gives special children to special people, so remember that and hang in there. Your doing great and I will have you in my thoughts, your not alone.

Anonymous said...

Billie--

I've been thinking and thinking about this post but haven't commented since words are sort of failing me. Your writing is very evocative. It enables those of us who haven't walked in your shoes to feel something of what you're experiencing and feeling which is very powerful. I am sure that it must make you frustrated and sad to have to model for people how to interact with Eden, but it also seems like such an amazing gift you are giving to her. What a great and inspiring Mom you are! But even the great and inspiring need a little happy and carefree every now and then. Is there no way you could squeeze some in?

All my best,
Kate

Anonymous said...

This post has me in tears. Especially the part about Holland getting more attention, and Eden sometimes none, when you're out with them. That just breaks my heart. She's a beautiful little girl. They both are. I can't imagine what it must be like to be in your shoes. You seem so much stronger than I could ever be. You're right though. No matter how hard it is you're blessed to have these two little miracles.

PS... I used to babysit two little boys. Their father has CP and is a successful attorney. If Eden was strongwilled enough to make it through those first weeks when she came into the world way too early I think she's got the potential to continue to succeed.

:)

Anonymous said...

Dear Bille,

I love you.

Mamma Jules

Anonymous said...

I love that picture of Eden, and her roller pictures too. She looks very happy. I'm not sure what to say, but hang in there! It's okay to be mad, sad, or whatever, just respect yourself and those feelings. Also, please know that you can call me crying anytime! Many hugs and smooches, Donna

Anonymous said...

Dear Billie, I go to your father's church and my name is Gloria. But your story touched me deeply. I have two cousins one is perfectly normal in all ways, but the other one has CP. She was only supposed to live till she was at the most 16. She couldn't and still can't walk, she in now in a wheel chair. But she is also 50 years old. You are doing the very best for your children. You cannot stop people from being people. They do not know how to deal with special children. the only thing you can do is love your children, you do not have to give more attention than you already do. It is not up to you to make up for other people's short falls. You know that you love them, and you know what you had to do to have them. That is your love. I know that you are a very caring person. I have followed the twins on line for the 21 months that they have been alive. They are amazing children, and so are their parents. God is with you and the babies always.

liz.mccarthy said...

Oh My Billie....My heart just aches and tears have sprung to my eyes.....

First of all you so captured EXACTLY how I feel, about all the sacrafices we have made to have healthy children, to have children at all. I hope you don't mind, but I'd love to copy what you wrote for my blog (with credit to you of course)....

I'm so so sorry sweetie. I've been in a funk myself lately, feeling sorry for myself, I lost it horribly at my pedi's office when I had the feeding pump attached to K, she was vomiting, and then a mom with a baby came out to the waiting room and started to breast feed. I at least held it together until Kaitlyn and I went back to our doc room and I compeltely lost it in front of one of the nurses. I just sobbed and sobbed.

Did you read my information about the George Mark center here in CA? It is the most amazing respite center for parents...and it's free and they want people to come use them. They are the only place in the US.....www.georgemark.org

Anyway, I'm at a loss for words to help give you comfort.....I know (only to a point) of how you feel, I worry daily about my dd's future....I know I have years of feeding issues ahead of me, among who knows what else....

You are an amazing, wonderful caring mom, and it's ok to feel mad, cry, upset and feel sorry for yourself. You deserve so much....you give so much love to your daughters.

Hugs from Calif....Liz

PS - I just set up a new Yahoo group for us Preemie Blog moms...come join if you can:
http://groups.yahoo.com/group/PreemieBlogMoms

V said...

Hi Billie

I have just read your blog for the first time. (from Tertia) My daughter was a special needs baby. You can read all about her on my blog. In the special needs group to which I still belong there is a boy called Ryan who just turned 21. His mother was told that he would be a vegetable yet now he is a karate champion.
My daughter never got to the stage where people started noticing that she was 'different'. Even when I said she was 10 months I did not often get too many questions about why she was not sitting yet, or even rolling over. I was not looking forward to those days but of course now I would give anything to have the whole world asking what was wrong with her because at least she would still be here.

Sorry, just feeling a bit low. Your daughters are beautiful. Don't feel bad about the way you feel, you have been through more in the last few years than most people ever go through. I hope you don't mind if I put a link to your blog on my special needs group blog(http://kidsgroup.blogspot.com/) I think it is good to share one's feelings and to communicate with people who have been through something similar.

What The Hell Is This? said...

you are so strong.. bless you and yours. Both Eden and Holland are beatiful! And it would be hard not having them here.

Anonymous said...

Huge HUGS, Billie! I can feel the emotion in your post and am so sorry that you are dealing with CP issues. Eden is a beautiful little girl and her smile is contagious!

You are a very special mother and its obvious how much you care for your girls. You were chosen as their "Mommy" for a reason. And you are doing a great job!

I also have multiples (triplets) and understand your frustration when one child is developing "normally" and the other is developmentally behind. Its not easy, but for us, its reality! After losing one of our babies last year, I have a new perspective on life with the surviving 2 babies.... "Life with a special needs child is SO much better than the alternative." I would give anything to have my little boy back in my arms.

The fact that CP is not "progressive" also gives me hope for the future. What Eden has... is what Eden has. And although she will never be "CP free", her condition can and will improve with therapy.

Your beautiful family will be in my thoughts and prayers. Tracy