Our Story: Raising Twins with Cerebral Palsy

I know I’ve shared the twins’ birth story with you, but I haven’t shared very much about my twins other than their very premature birth. The fact that they survived is such a miracle in itself, and because we are so very, very thankful for that one fact, I tend to shy away from other topics. Topics that are a little harder to talk about, a little closer to my heart.

Do you ever feel like, maybe, if you just don’t acknowledge something, it isn’t really real? I think that is my go-to method of coping with situations beyond my control. I let a thought flit into my mind, it briefly scares the crap out of me, and I shut it down before I start googling like a crazy woman. Well, that is honestly how I have dealt with much of the issues/potential issues concerning my twins. And then the other side of the issue is that they really ended up so incredibly fortunate, considering their birth circumstances, that I hate to walk around all woe-is-me about something that is so much harder for so many families. But anyway, I know I’m rambling. As I said a little bit ago, what I want to share with you today is something that I don’t talk about very often.

Avery and Cade have Cerebral Palsy (CP).

There, I said it. Sometimes I feel like not telling people about them having CP is deceitful, like I’m hiding something. And because it’s not very obvious, I can kinda-sorta-maybe pretend that it’s not really true. Except that it is.

Cade and Avery at 9 months; neither was creeping/scooting/crawling yet.

In case you don’t know what Cerebral Palsy is, this site has a ton of great info. I can remember the day, the exact moment, when our neonatologist told us about the hemorrhaging in the twins’ brains. He gently told us where the bleeding was located (it was in the same location on the left side of both of their brains) and about the risks associated with a grade 4 brain hemorrhage. He told us they would likely have CP, but to what degree we wouldn’t know until they started developing more motor skills. There was a very good chance that they would both be severely disabled physically, due to their high-grade hemorrhages. I felt like I had been punched right in the gut.

We left the hospital and got into the car, driving aimlessly out of the parking lot. I looked over, and Carl had silent tears streaming down his face. He pulled over, and we sobbed together, clinging to one another as if our lives depended on it. In that moment, it felt like our lives were ending. I felt as though the hikes I had dreamed of, the camping trips I had pictured, had all drifted away from me with a few words from our doctor. I felt sick at the thought of my already struggling babies going on to live a life filled with difficulty. I was angry with God, and yet pleading with Him at the same time. The biggest, scariest part of all of it was that there was no way to know for certain what their physical outcome would be. We didn’t even know if and when their hemorrhaging would resolve.

Days turned into weeks, and eventually we had the MRIs that showed that the bleeding in their brains had resolved. This was such good news, a small victory that meant no surgery and no shunts. As the weeks turned into months, we spent our days watching their every move. When they started grasping toys, we wondered if they were grasping differently with their right hands than their left. When they didn’t scoot or crawl, we worried. They started physical therapy and I hounded our lovely therapist with questions. Eventually, they did crawl, and then they cruised. They learned to use silverware, and they (finally!) started walking. When their CP finally became apparent, we knew we had so very much to be thankful for.

Cade and Avery both have monoparesis that affects their right legs, mainly their lower right legs. Cade is hypertonic (his muscles are tighter than average) whereas Avery is hypotonic (weaker/looser muscles than average). They both wear a brace (AFO) on their right leg that covers their foot and extends to their knees, only at night right now, but have worn it around the clock in the past. Cade has had to have casting done on his leg to stretch his muscles out (which, if you are interested, has been extremely successful for him).

To be honest, most people don’t even notice anything about them other than that they walk kind of funny. I think most people write it off as just a random, unusual gait. Medical professionals typically notice, but otherwise, they will most likely get by in life without many people realizing what they deal with on a daily basis.

As far as how this affects their daily life, other than wearing a brace at night, the biggest challenge for them is probably their balance. They tend to toe-walk, so they have to be constantly reminded to walk on their heels. They don’t have very good balance, and fall easily. They were very late walkers, with Cade walking at 16 months and Avery at 22 months, and only that early due to intense physical therapy.

Avery at 21 months, one month before she started walking on her own.

Now that they are older, they don’t face all that many obstacles. The older they get, the more aware they are of keeping their heels down, correcting themselves as they walk. In time, I believe they could work on it so that their CP was completely unnoticeable even to a trained eye.

Cade at 14 months, right before he started walking.

If you are reading this and have a child with mild CP, or worry about your baby potentially dealing with CP in the future, take heart. Although there is nothing to cure it, it is manageable. It is such a heartbreaking diagnosis, as I know all too well. Children with CP struggle with tasks that come easily to other children, and therapy is hard work. But as a parent, you don’t have to sit idly by. You are as much a part of your child’s outcome as your child’s therapist or even the child himself. Make sure your child is seeing a Physical and/or Occupational Therapist, and make sure that the therapist knows what they are doing. My husband is a PT, but he has never been the kids’ personal therapist. He works in sports medicine, and while he can treat children, it isn’t his specialty. We found an absolutely amazing pediatric physical therapist, whom I can’t imagine living without in those early years. She not only did amazing things with the twins, but she encouraged me along the way when no one else could. We have stretched the twins’ legs almost nightly for six years now, and while some may find stretching worthless, I believe it has made a huge difference in their mobility today.

I am so thankful for this wonderful outlet to share some of the things we struggle with. I hope that our story can encourage someone. If you have any questions at all, please leave me a comment. And if you have a child with CP and just need a listening ear, feel free to email me at kelli@themommydialoges.com

No Comments

  1. Maria Butkay -  July 12, 2012 - 9:42 am

    Kelli
    I am a special education teacher and work with students that have severe and profound disabilities. I think parents like you are amazing! It sounds like you are doing everything you can to help your children to be the best they can be. It is so important for parents like you to do as much as they can for their kiddos because by the time they reach school age they will have the chance to be super successful in all the ways that other children can be. I know it is challenging to have children with CP but parents like you give their children a happy, warm, and eventful life. Keep up the great work and love!!!

    • Kelli -  July 31, 2012 - 12:20 am

      Thank you so much Maria! It means so much to me to hear from someone like yourself. We are truly so blessed by these two little ones!

  2. Amanda perry -  July 12, 2012 - 10:52 am

    Wow kelli i had no idea! The twins (as you know) are completly perfect! You wrote this so well i cried with you and felt the dispair turn slowly to hope and the pride in your children! Amazing story really 🙂 im sure they will continue to accomplish everything they set their minds on 🙂

  3. Heather P. -  July 12, 2012 - 1:31 pm

    Wow! What amazing little people you have! It is such a blessing to have children. I know people take for granted that they have typical children. Thank you for sharing your beautiful babies and struggles with us!

    • Kelli -  July 31, 2012 - 12:22 am

      Thank you for reading, Heather! After everything we’ve been through with the twins, we are definitely thankful for how far they’ve come!

  4. Maggie Jones -  July 13, 2012 - 12:42 pm

    This was such a vulnerable, sincere, and honest post. What a beautiful gift, to be able to express yourself so truly. My dear friend through school had a very mild case of CP. He is such a capable man now. Other than a little tip-toe walking, you would hardly notice. Understanding is the key to acceptance. The more you talk about it, the more people will rally around your kids and support them. Well done, Kelli.

    • Kelli -  July 31, 2012 - 12:25 am

      You’re so right Maggie. It’s so easy though to waiver in knowing what’s best for them. Somedays it feels like its best to keep quiet about our struggles, but other times it’s just the opposite. Anyway, I’m so thankful for all the support I’ve received simply by writing some of this out, so that’s encouraging! Thank you for your kind words!

  5. Ashley -  July 13, 2012 - 6:21 pm

    Kelli
    Amazing of you to share! You are such a strong woman and your little ones are lucky to have you. I’m sure another reason the twins have excelled so much is because you and your husband have stayed strong and refused to give up. Keep up the great work hun

  6. Susan S -  July 20, 2012 - 9:22 pm

    God bless you and your family.

  7. Sandra -  July 26, 2012 - 10:49 am

    What an amazing story! I can’t believe I didn’t know this about the twins. They are beautiful and amazing and you are a strong and amazing mama!! Thank you for sharing this story!

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