This is something I have heard a lot in speaking with doctors about Cerebral Palsy. "It won't get any worse." It is the kind of thing that you are desperate to hear in the beginning. It makes you think that you can handle it. You know, it's mild right? ...and it won't get any worse. You hear these things so much louder and more clearly than anything else. Words thrown out without regard to your desperation. Words like "mild", "slight", "minimal", and the big "it won't get any worse."What they don't tell you is that none of this means anything. Or maybe they do tell you and you just aren't listening.
What does "it won't get any worse" actually mean? It means that the actual brain damage that has occurred will not get worse. Cerebral palsy is not degenerative, and barring extenuating circumstances, no additional injury will occur in the brain. That's all it means.That said, in my experience CP most certainly DOES get worse. It is worse when your almost 3-year-old cannot sit up than it was when your 1-year-old could not. It is worse when your almost 3-year-old cannot walk than it was when your 2-year-old could not. It is worse when your almost 3-year-old cannot assist in feeding, dressing, bathing, or toileting herself. And it will be even worse when your 5-year-old, or 16-year-old, or 25-year-old cannot do these things.
It does get worse. I'm sure it gets worse as your child's body grows, and their muscles become tighter and they develop contractures, or when their trunk tone causes floppiness that ends up causing their spines to curve. It is worse when you have to watch them endure multiple surgeries to cut and lengthen muscles, endure painful injections and serial casting, or undergo spinal fusion surgery.It gets worse when your child is in a wheelchair that you cannot navigate to shop at a favorite store. Or when your child watches the other children run away from them to go play on the swing set. Or when the other kids are climbing and playing on the playscape, but your little one cannot join in.
It gets worse when she continues to have trouble eating because it is too difficult to sit up in the chair...when her floppiness causes trouble coordinating swallowing and she has constant reflux...when she has her first seizure...when her IQ scores show that she has a cognitive impairment...when the meds she is on for her reflux or seizures cause disturbances in other areas. I am sure these things are worse.It gets worse as your baby becomes more and more aware of what she cannot do. I dread the day that she stops trying because she knows she can't. I dread the conversation about why the other kids do not want to play with her, or why the people in the store are staring. I cannot bear to think of the day when she realizes that the boy she has a crush on probably won't go out with her. Or when she understands that she probably won't be able to have kids of her own because her body can't handle a pregnancy. Yes, it gets worse.
While everything else CP related gets worse, I work toward coming to a place of acceptance. This is our life. I will spend the rest of my days dealing with CP and all of the physical and social elements that come with it. It is not what I had planned, or how I envisioned my life, but it is what it is, and I will strive to make our home a place where we work hard and do therapy, but also a place where we have lots of fun, talk to each other, and are unconditionally loved and accepted for who we are.The bright spot in all of this is Eden. She is my ray of light, my silver lining. Whatever sliver of hope I can muster is for her. My love for her, and for Holland, grows exponentially every day and everything in my life is certainly better because of them. I have asked myself this question many times. If I could go back in time and do it all over, knowing the outcome would be exactly the same, would I do it? I am finally at a place where the answer is a resounding YES! They are worth every second of pain, or stress, or worry and my life is better with them in it.
49 comments:
Your daughters are lucky to have such a wonderful momma...how fortunate for them that they were born to you. I don't know you and i rarely comment here, but I have read your blog for a while (over a year) and think about your family quite often. I'm sure that the 100s of people who read your blog think about you and your girls often too. Thank you for opening my eyes to CP...for putting a little girl's face on something I knew very little about. You inspire me as a mother. I hope that the thoughts of all of us strangers out here give you strength.
I can't imagine going through your daily trials and beings as strong as you and John are. I think the medical community says things like "It won't get any worse.." so they sleep better at night, while you toss and turn knowing that tomorrow will bring challenges for you. But just as things may get worse..the love you have for your girls will only grow stronger and stronger and isn't dependent on what Eden can and can not do. The advantage you have over a parent that doesn't have the trials you do, you don't take anything for granted!
I just wanted to share something with you. My best friend was deaf,(no CI)he had quadriplegic CP that effected all of his body, he was in a chair that he had to dive w/ his tongue and suffered from all if not more difficulties of your beautiful daughter, totally dependent on his family and friends. But he was an amazing computer architect, he went to public school, highly intelligent sensitive, caring, happy and had a wonderful sense of humor. He had a girlfriend, went to prom and dances, on dates, movies, dinners, “walks” and was the best human being I have ever met. Yes he experienced painful treatments and overcame horrendous situations but because of that he had his priorities in the right place. He was massively devoted to his friends and family. Anyone else’s troubles came above his own. His dependences on me were a gift for me. He was my idol until we became friends, then he became my hero. He was the greatest gift that God could have ever given me. He sadly died in 2001 of pneumonia, 3 days before graduating from High School. But please know that CP does not mean an end of normalcy. Your precious Eden will not experience the world the way that you did or that her sister will, but she will experience life through her own body, and her own eyes. There is no loss for her, only to gain. It will not be easy, but please know that she has the whole world open to her just like any other child, and she will experience it through her own means, just like we all do. =)
Because Edwin was so sick and given such a poor prognosis, and because Serena had a grade II bilateral bleed with some "echogenesis" seen on her head ultraound, I think about CP and the other affects of prematurity often.
I stress, worry, and semi-obsess about possible diagnoses.
I go into a store and notice how I can barely manuveur the double stroller and wonder how we will shop if they are in a wheelchair.
I see other children with special needs, and I see others stare, and I wonder if that will be me one day and if I'll say something to these gawkers.
I think about it a lot. I'm trying to emotionally prepare for it being a possible reality. Since they were born I never thought "it can't happen to them." I try to wrap my mind about how scary, difficult, and heartbreaking it would be. It scares me and makes me cry, but every day I am thankful they are alive.
Sceptics always say it is easier to say that and think that way when you have cute babies smiling at you, but what about the teen years and beyond? Well, I believe in my heart that my feelings will never change. These are my children. Beings that Edwin and I created and will nuture and love forever.
Thank you for sharing these same feelings. Thank you for being a source of inspiration, information, and hope.
Thank you for sharing Holland and Eden with us.
No matter how bad it gets, you will always have those beautiful bright smiles of your daughters directed at you. They will feel your love and John's love so acutely, and will never cease to respond to it.
That is the beauty of love between a child and a parent. When my girls smile at me, it doesn't matter how sick they are, or how worried I am, my day is instantly better.
I love you, billie.
Kendra
Oh you have me in tears. Your girls are so special and wonderful and loved because of you. You are an amazinf parent. Never change. Things may get worse- but you are always gettting better as parents and as a family.
Health care providers say those insensitive and yes, incorrect things to make themselves feel better.
Janet
You are exactly right. I have gone through the same thing: it only gets worse as they get older. People aren't so loving towards handicapped teens and adults, as they are with little children. The fact that my 10-yr-old wants to crawl in my lap is a bigger deal now then when she was 4. And it will continue to be a problem as she gets bigger.
But, we always have to remember to get thru one day at a time, enjoy everything about them we can, and try not to focus on the difficult stuff. Maybe laugh at the bad stuff---I did that the other day, and it helped a lot. It actually felt good. A positive outlook can make a world of difference.
That'll help our girls as well. Maybe someday, they'll be able to scoff at people who pity them....how cool would that be? ;)
there are definitely new challenges as our kids get older--i agree. sometimes i get overwhelmed thinking about what the future will look like. i try to face each day one at a time and be BRAVE. You are a brave mommy! Life will not be easy for Holland or Eden, but it seems to me that they experience JOY in living. Don't worry about the potential pain they might experience. They will be brave, strong girls--just like their mommy. xxxx
One of my good friends had a severe anoxic brain injury at age 8 and has similar (slightly more severe as she also has limited use of her hands. Eden has more use of her hands even at 2 1/2) physicial difficulties to Eden. She also has a mild-moderate cognitive impairment. She also lost her father and younger brother in the accident. Her injury is not referred to as CP because she was older than two when it occured but it is very similar. She is currently 23 years old. She lives home still but she has a boyfriend who also has a cognitive disability, the two are VERY happy together. She works in a supported work environment. She has many friends and enjoys hanging out at the mall, clothes shopping, going to the movies, and listening to her favorite songs on the radio. Although her life will never be the same as it was if she did not have the brain injury, she lives a very happy and full life. She has a website at http://www.geocities.com/krystleweb123/ that I put up at her request. She dictated a lot of the text for the site. Eden will find her place in the world, have friends, and may even fall in love someday with someone who accepts her for who she is. Keep on doing the good work you're doing.
Prayers are with you!!!!
oh Billie, that just breaks my heart and makes me realize that all the day to day problems I have with my so called "normal" children are nothing compared to what you live with. You are the best mother that little girl could possibly have and she will know how special and wonderfuland beautiful she is all because of you. Don't give up
Billie,
Just FYI, there is an accessible playground just outside of Ypsilanti - on Textile Road between Whittaker Rd and Rawsonville Rd at "Ford Heritage Park". It is a nice, new (last summer) playground that is great for all ages, and about 70% (or more possibly) wheelchair accessible. Most of it has a rubbery base that strollers and chairs can be easily pushed on. This might be a fun place for both girls, that is only 15 minutes or so from your area.
Yippee! Do they have metal slides?
What a poignant post. You need to gather your writings into a book someday. Your fears concerning the future are very valid and real, but for now just keep being encouraged each day by the beautiful smiles on your dear Eden's face. You are a champion for her cause...keep fighting for her just like you have been. I am sure some days must bring you into despair, but you are clearly doing a marvelous job of making the world as accessible to her as possible...look back at your pictures of going bowling, petting the farm animals, or that fabulous mailbox, or them scribbling at the chalkboard. You are great parents, and are doing a fine job. Though your issues are different, I think all of us have areas where life didn't "deliver"---who plans for secondary infertility, or an unwanted divorce, or the sudden death of a loved one? We all have to adjust expectations to meet reality; you just have a bigger pill to swallow than many of us. May God continue to sustain you with hope and strength, and may He grant you peace as you fight each new battle for your girls. Keep up the good work!
Lori in FL
I feel like a bit of a dumbass giving some advice on this, but here goes...
You can pretty much stop worrying about the pregnancy issue. By the time Eden is 18, advances in egg freezing will make it possible to freeze the eggs, wait for the right guy, and have a surrogate carry the baby. If thats not against your morals, start investing in a special fund now (in 20 years, the money is expected to quadruple).
You're a school psychologist and should know (I know you do know) to let go of those scores as they are NOT VALID at this age, esp. with special needs that affect testing.
BTW, my 25 weeker scored as mentally retarded (Bayley) in follow-up, but after massive therapy (PT, OT, speech) is at least a year ahead. Her body could not reflect her brain at that point. Same with Eden, if that was not theoretical writing.
She's ridiculously attractive and appears to be really nice. She's going to get guys, wheelchair and all. I did a lot of energy healing work with my gal. It made tremendous differences in her progress. Its something to look into to help with increased tightening. It really helped her muscles alot.
I forgot to add that my gal had such severe reflux she had to have specially compounded meds. The doctors told me that it would be for 2 years minimum. After energy healing sessions, she was of all medication in 3 months.
It is absolutely worth it.
I have no experience with this whatsoever so I cannot hand out any advice. I can say that Eden and Holland are very lucky little girls to have you and John as their parents. Reading your blog certainly makes me put my problems into perspective and appreciate my children's health when last year I wouldn't have given it a 2nd thought. This is the first blog I ever read and I've been visiting often since because I just cannot get Holland & Eden out of my mind-they truly are wonderful little miracles.
Kelly in Canada
Amen! You bring back so many memories of my first few years on this journey. I clung to the "doesn't get worse" thing for so long, until I too realized it didn't mean anything. Ethan could stand in my lap when he was 6 months old, because his muscles were so tight. I remember thinking it would always be that way, that at least he could stand as he got bigger. Because it "wouldn't get worse"! I didn't think he would lose skills, because it wasn't degenerative. But I didn't realize his muscles and bones would change so much over time, as he grew longer and heavier, and his abilities would change with them. When he was 1 and med-free, I didn't think about how many prescriptions we'd fill each month once the seizures started, and the reflux, and the respiratory issues.
It sure as hell gets worse. But you know what? It gets better in some ways too - when you have those good days where everyone is happy and healthy. And you learn to appreciate their smiles and laughter more than any other parent realizes they should. And you erase the milestone chart from your mind and instead marvel over the miracle of the first time they do simple things like bring their hands together or reach for a toy or say "mama".
No one knows what the future holds. To say it won't get worse is a lie. But it's also a lie to say it won't get better. I cling to that now instead.
It sounds like a long journey ahead but Eden is so very lucky to have you as her Mom to guide her through.
Eden and Holland are so lucky to have you, Billie. Once more your post had me in tears, both because of its eloquence and its emotion.
You are an inspiration... keep up the good work momma!
Billie, my heart goes out to you and your beautiful girls! I am the mom of a 25-weeker who is now 13 months old. I found your blog during my frantic search for some one who could explain to me why he won't eat. I'm still in the sleep feeding/puke cleaning phase with no answers so far. But that's another story...
Like everyone else who comments, I am amazed by your grace and strength and the sense of humor you maintain through it all! You are a wonderful Mother! Your LOVE and Johns LOVE for Holland and Eden will lift them up and carry them through this life. It is the best gift you can give them, and much more than many "normal" kids receive from their parents.
I apologize in advance if I sound in any way like I am minimizing your situation. I can't tell you how much sorrow I feel for you or how many times I have cried reading your bitter-sweet stories. I just wanted to share some quotes that were sent to me at a time when I was struggling to come to terms with our son's premature birth. They were helpful to me. I hope you don't mind:
"We always find that those who walked closest to Christ were those who had to bear the greatest trials." --St. Teresa of Avila
"Suffering is the very best gift He has to give to us. He gives it only to his chosen friends".--St. Therese of Lisieux
"The Everlasting God has in His wisdom foreseen from eternity the cross that he now presents to you as a gift from his all-knowing eyes, understood with his divine mind, tested with His wise Justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His Holy Name, anointed it with His grace, perfumed it with His consolation, taken one last glance at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an alms of the all-merciful love of God."--St. Francis De Sales
Praying for you, and looking forward to more stories about your beautiful, happy girls..
Billie,
I'm almost positive the slides are plastic, but I will be there Thursday and Saturday and I will try to remember to check and let you know.
Barb
I enjoy reading about your beautiful family, because even with the setbacks and struggles, you are writing joy and discovery and hope. You might enjoy _Karen_ by Marie Killilea. It's out of print but widely available. I'm sure the story will resonate with you--the people in this memoir are kindred spirits of yours.
Bille...I am so sorry for the struggles that your girls must face. Every time I come and see your blog, I am blown away by their beauty, their joy, and their feisty spirits. I know that whatever bumps may lie on Eden's road in the future, you will be there to help her over them, that is her greatest blessing.
(((HUGS))) and wishes for a bright future...
-Anna
Once again I read your post and tears flow. You are such an inspiring person and you are such a wonderful mom. You keep things in perspective and work to continue life as normal as possible for your girls and they will love their mom for that forever. I think about you often always look forward to the latest pictures and stories of your beautiful girls.
Kristin
Just checking to see if I can post...
I just got back from my daughters school, and I thought about you the whole time. There is a boy named Robert, he was in my daughters class last year. He is in a different class this year, but same lunch time. He has severe CP. He was not premature, actually was full term, but a cord accident(and doctor error) at birth caused his CP--it is a miracle he lived. He uses a motorized wheel chair, he can not feed himself, his full time aide at school feeds him (I have never seen a feeding tube), and he can not speak--maybe a few words, my daughter says he can say no. He is 8, and in second grade. The full time aide he has tells me he is smart, understands lots of things. He was in the Special Olympics last year, and my daughter's class got to go watch him. I believe he won an eletric wheel chair race. I know he recieves lots of therapies, not sure if he has had any of the surgeries you mentioned.
I spoke to his mother once on the phone, they do actually live in my neighborhood.....I do not know too much...I am not sure how he started off, if things gradually got worse or if he has always been immobile, I have only known him since last year. I know there are other things to worry about from talking to her as well. Arguing with the homeowners committe to pave their backyard so he can use his wheelchair back there, putting a pool in to help his muscles. None of the parks in our neighborhood are remotely handicap accessible. I suppose very few are. Having a special van to roll the wheelchair in and out of.
Just wanted to let you know that here is a severe CP child who is in the "regular" public schools, with a full time aide, who seems to do pretty well at school--
Also wanted to add, that at the end of school last year, my daughter wanted to set up a play date with him. I asked here what she thought she would do with him, she said toss a beanbag back and forth to him, something like that. I thought it was really sweet of her......I am not sure what age kids are before they realize that one kid may have differences.
I am hoping that Eden never has to deal with things to this severity. I do not know anything about CP. Just wanted to share my thoughts, though pretty random I suppose, with you.
Altho he died in his early 20s a young man we knew taught at the university as a "graduate teaching assistant." His students had to sit close to hear his voice, but they all adored him. . . and learned from him: learned more than just subject matter.
Would Eden not have as much fun on a slide if her "hardware" was taken off? I know that if she is not wearing the external hardware, that she would not be able to hear, but perhaps not being able to hear is worth the trade off to be able to enjoy going down a plastic slide? Similar to protecting it from the water when she was having so much fun? I'm not trying to be rude or obnoxious, just being curious. From what I know, static won't hurt the implanted part?
WOW!!! You just said what I want so many people to hear. May I link you..... I am gonna use your post. THANK YOU!! I so felt all alone today. I felt down, lonely and that people think I "asked" for the trials that I have. No one asks for it, we just get them.
I had a boyfriend with CP. His right side was affected, he limped and he basically couldn't use his right hand. However, he still rode his horse, drove a car and was a loving and wonderful guy.
We had a wonderful relationship, and while we aren't together anymore - two very different people with different agendas, nothing to do with the CP - I still remember the time we had together very fondly.
I think the point I'm trying to make is that even though things may seem impossible for Eden, if she is as wonderful and as bright as her mother, you know she's never going to be alone in this world, there'll always be someone next to her (and Holly too!) wanting to share in the beautiful place they will make this world. :)
Love you Billie.
Jules
Much love to you all. Thinking about you. Love, Jess
There is worse, Billie. CP is a difficult disease to live with, but at least Eden can live.
Yesterday, we buried our cousin who had Duchenne's. At Eden's age, he was a normal little boy given a death sentence. Rather than being able to work hard, and strive to be the best Eden she can be, our cousin was instead born with everything and until age 24, when he passed away, slowly had everything stripped away.
"Normal" for our cousin was knowing every day in his extraordinarily smart brain that the only normal part of him was that wonderful brain, and that every sickness could be a death sentence.
He didn't get to experience many of the things that you're afraid Eden won't be able to experience (like dating), but in addition, he was able to experience things that Eden probably won't be able to experience (such as walking), just to have them and every other voluntary muscle control taken away as he got older.
Eden's situation is sad, but it's also inspirational and open-ended. Eden has a future, and in spite of all the obstacles ahead of her, you should thank God every day for that.
Hey Billie. I haven't been here for a while and am glad that I checked in on you all today. A year ago I wish that I had you to speak for me. I was tripping over my emotions and wish I could have said what you wrote here. The good news is that I am stronger today. I am less angry today. I am more hopeful today. I am more peaceful today. Everyday Ben gives me what I need to see through the insensitivity of the "Pro's" (can you say fundoplication) and focus on what needs to be taken care of, so everyday I morn a bit less and heal a bit more. Don't get me wrong, I still have days when I want to scream what you wrote here at everyone I see, but those days are fewer then they used to be. Some other good news is that Ben gets that mad too. It breaks my heart, but then he moves on as well and my heart is instead filled with wonder at how such a little person can be so strong. You are giving your wonderful girls the tools to move forward just by being strong loving parents. I'm always thinking of you.
Shannon
To Billie, in response to Mir's comment, from a mom of 3 (formerly preemie) young adults -
I hope that you don't let yourself fall for the comparison of your feelings, complex as they must be, with those of any other family. You are entitled to have both joy and grief, excitement and worry, hope and fear. The fact that "it could be worse" or "it could be better" is meaningless, because the reality of your family's lives is what you all are living. And no one else can know that or be so foolish to judge it.
Janet
What a raw post. I'm always amazed at your ability to put into words exactly how you're feeling--the good and bad. You know I stand in awe of you; I've said so many, many times. Your girls have such an amazing role model.
I can't imagine the range of emotions you go through on a daily basis, but thanks for sharing them with us. I think you are a great voice for parents of children with CP. Your fears and heartbreak for what lies ahead for Eden are understandable and you have a gift for writing about them so honestly. Please know I'm thinking of you...
love you, love you, love you.
and that's about all i can say :-)
lis
Hi Billie
Eden has a beautiful mind and soul that shines out of her in every picture.
My Shawn was a perfectly normal, full term healthy boy-and toddler and preschooler and little boy and bigger boy and teenager- he was blessed by the gods- his soul was so beautiful and he was a brilliantly talented cellist by then with, according to the administrators of the scholarship he was privileged to have been given,world class soloist potential.And then, at about age 15 schizophrenia- the ugliest word in the English language- began to steal him away from us and he jumped off a building at 18 years- he wrote that this act was, by the way, going to save the world.
Would I do it over, knowing the whole thing?
Oh yes, despite the agony, I am privileged to have been his Mom.
Who knows why we are given what we are? But I/you/we are/will be richer, not poorer for it.
Eden is so special-her spirit shines out into the world.
(I hope reading this is not too upsetting for you)
No one chooses these things- we all just do the best we can
Love, Grammacello
I also have great respect for you, Billie. We follow your girls' story and count our blessings with our former preemie, Lily.
I understand your frustration with the doctor's comments of "Things won't get worse", but also feel the need to point out that the medical view is different from the parents view. While we as parents deal with emotions and frustrations, those in the medical field have to see things from a less passionate and more analytical side. "It won't get worse" is a wonderful diagnosis that the physical body shouldn't continue to deteriate, and therefore require more difficult medical processes.
Another way to think of it is "this is what you have to deal with" rather than "and then the left side will stop working, then the lower, then..."
I've also had frustration with doctor's comments, and I know it is hard. But doctors and nurses are people, too. They don't tell you something to make themselves sleep better at night. But if you feel that is truly what they are doing, find another doctor whose opinion and communication skills you can trust more.
I hope I didn't sound preachy. I've become friends with many people in the medical community due to our preemie and know that our doctors and nurses do have hearts.
Thanks for keeping us up to date with Holland and Eden. We think about you often.
Laura
I couldn't have said it better myself.
I've felt exactly the same way, and have experienced similar things. My son doesn't have a twin, but the significant resounding truths are still the same-
Billie,
I checked the playground today - the swings are plastic (sorry!). They do have a variety of swings - the "belt type" that older kids sit on, the "bucket style" that many babies/toddlers use, but they also have the "seat" style with a high back that is great for kids who need supported sitting. There are many fun things to do at this playground - it's really nice. It is at "Ford Heritage Park", off of Textile Road between Whittaker and Rawsonville (easiest to get off on Huron River Dr./Whittaker Rd. - 183 on I94 and go south to Textile, then East on Textile about a mile. Hope you enjoy the park!
Barb
I have followed your blog for a long time but have never posted a comment. Your post today nearly broke my heart. I am sad for you & your precious girls, but in a way I am sad for myself. Sad because I have 2 healthy girls and hopefully I won't know the anguish you go and will continue to go through, BUT you are such a beautiful mother and I take everything for granted and let the little things get in the way, and I'm not always as good a mum as I want to be. I wish I had your strength and your patience. Anyway I just wanted to say how wonderful I think you are and your girls are just so beautiful and I love reading your blog, and I think of you often.
Touching reflections on a mother's calling! I found tears in my eyes as I read your post. Our daughter was born at 24 weeks after being without amniotic fluid since 22 weeks. The doctors assured us that she would have severe handicaps and developmental trouble. They begged us for weeks to terminate the pregancy. Miraculously, she is doing so well now at 14 months...no signs of any problems. But your story and your statement today that you would still do it again if you knew the repurcussions is a reminder of that decision we made 14 months ago to keep our child, no matter the difficulty. God Bless!
I to have been there.not W/CP but with congental hydrocephlas (water on the brain). My daughter is shunted 26 surgeries or more, mostly on the brain,coma, stroke,parallized and much more.What I want to tell you is don't be angry. It is in your writing and It's ok to be mad but get rid of the anger. We expected the worse also and there were so many really bad days but today my daughter has gradutaed college.HOPE!FAITH!THOSE BEAUTIFIL GIRLS!
Yet another entry of yours that "I get:....I get it wayyy too much. Brought tears to my eyes.
It does get worse but we get stronger and so do our girls.
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