Cerebral Palsy, Parenthood, Personal

Answers to Questions You are Sometimes Afraid to Ask

Laugher with Mama

1. How do you introducing a group of kids (in church, say) to the idea of children/adults/people being differently-abled? This is a great question! I have talked to my nephews a bit about Sebastian, but what I have learned is that the most comes from when they are curious and ready to ask questions. They have already accepted Sebastian for who he is from the beginning and never saw him as different. However, as he has gotten older and with that age has not come new (obvious)  skills, they do start to wonder. I think that it’s always best to let kids ask questions and try to answer them or find out how they can be answered. I always like to read books to help kids learn about things too. I’m creating quite a collection of picture books, not just about kids (or animals) with different needs, but also characters who have challenges and how they succeed in the world around them. I will post a list of these books.

2. If you had to give advice to parents on how to support parents of children who are differently-abled, what would you say? Listen. Talk. Share stories. Sometimes I feel like friends are afraid to tell me what’s going on with their children because it is so different from what is going on with Sebastian. But sometimes it’s not.  And I want us to share with each other about our kids, because they are all doing great things, on different levels. Also, if there are any resources or other friends you can connect them with, that’s great too. I’ve had a couple friends introduce me to other CP moms via the internet just to get in touch to share our stories with each other. I’ve been so blessed to have even met some of these wonderful women and their children/families.

3. Our parenting lives are so different, but also so much the same. What irks you? I’m not sure if irk is the right word, but sometimes I feel a kind of punch in the stomach when parents complain about their children running all over the place or talking non-stop. I feel like the way our bodies work is so easily taken for granted and I don’t want it to be that way. Everything your child does is amazing, even the annoying things. Sometimes I  get annoyed (gasp!) with Sebastian’s whining (he totally inherited it from me…) but I  stop myself and remember that this is how he is trying to communicate with me. Then I focus and see what he is trying to say and I’m thankful he has that much of a voice.

4. What encourages you? When I get an email or comment from someone I don’t know who has found my blog and feels encouraged or hopeful from reading our story and then in turn shares theirs. I used to be that person and I know how much it meant to me to find someone that could understand what I was going through or offer up some new idea which might help on this path. I’m also encouraged by friends sending me messages and comments on those rough days, whether they can understand/imagine what I am experiencing or not.

5. Did you feel you went through a grieving process when Sebastian was born and/or when you discovered he was going to have disabilities? … And if so, did you feel guilty for grieving? I think the grieving comes in waves when you least expect it and knocks you down. You pull yourself up, sometimes with help, or a hug, and sometimes on your own. And then it falls off of you as quick as it came and you take the next step forward. Guilt? Depends. I do have more to say on this,  in a separate post as we near Sebastian’s birthday.

6. Do you and your husband have a plan of care for Sebastian for when you both pass away – or when he is old enough to live independently? Or are you frozen in fear like us? No plan, and no fear. We really live one day at a time. Ok, maybe we are into the months ahead as far as appointment planning goes. But the furthest I’m thinking is  about where we will be able to find a place to move in November that is wheelchair accessible and where he will go to school after nursery next year. I don’t even know what country we will be living in when we are all old and grey.

7. Advice for new parents facing a new diagnosis? Advice? Always talk to someone else in your shoes or even someone wearing similar shoes, but perhaps a different style. Finding the online community at CP Moms and then through blogs of other moms with kids similar to Sebastian, saved me. Absolutely. I was living in Egypt all on my own when we found out his specific diagnosis of dystonic CP (Which was recently changed to mixed CP by a new developmental pediatrician.) I had no one to talk to. I had no where to look, except online. It inspired me. It encouraged me. It fueled me. I would also say, trust yourself. Trust that you know what you are doing. Trust that you can do it.  For me, trusting in God was also something that I needed to do.

8. In what ways do you think having a son with CP has affected your marriage – both positive and negative? I think that Ali and I have a very strong marriage. I think that having a child always rocks the boat, no matter the needs of that child. The early days were the hardest, and still I imagine this is the same with any newborn. But the beauty is that we got through it. Sleep helps. I don’t think I really know how to answer this question. I know that some people don’t make it through ‘something like this’, but we do ok. We love each other. We love our son. We both work hard. We try to take time for each other and for ourselves. Sometimes things are balanced and sometimes they aren’t. We do more than ok. 

9. What marital advice would you give someone who JUST got a diagnosis of CP for their child? No one has ever asked me for marital advice before! I think listening to each other is important. Sharing your feelings but also giving each other space needed to get to that place where you are ready to share. Take small moments for each other. Let each other cry. Hold each other. Take walks. Be hopeful. Don’t give up or give in. Share the load together.

10. A question that sometimes plagues me: What are your (and your husband’s) thoughts on having another child? Is there fear of it, or are you worried that it would take time away from Sebastian and his needs? Thank you for asking this question. It is something I think about often! It is also something that I have been feeling ready to write about publicly, so I will be devoting an entire post to this question. Stay tuned.

I received some comments on facebook from friends who were thankful for the questions asked because they always felt agraid to ask them. Please don’t be afraid to ask questions. You are my friends. I want us to be a part of each other’s lives. In order to do that we have to share and ask and understand. I’m not going to be offended or hurt if you ask something about our lives. I’m going to be offended and hurt if you wonder and you never ask.

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10 thoughts on “Answers to Questions You are Sometimes Afraid to Ask”

  1. Thankyou Kara for sharing some insight into your journey. I am truly lucky to have you in my life and I learn so much from you and Seb.
    I am particularly interested to read your ideas into siblings 🙂 much love to you x

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  2. Kara,
    I read every blog you write. I love the way you share your life and your way with words. From here in NZ I sit and read (and often shed tears and smile with you) and really love hearing about how Seb is doing and the progress he is making. Your life is not without struggles but you are inspiring to me and you make me proud to know you. I can only imagine what an inspiration you are to other Mums going down the same road.
    Thank you for opening my eyes to the world of CP.
    Love Jozie

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  3. This blog rocks! I feel it snowballing (or catapulting?) into a powerful force. Thank you for your openness and for being such an amazing mama…

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  4. you have a very special way of putting words on paper.
    I love reading what you have to say and it captures me everytime.

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  5. Great Q&A’s. I feel like answering too!
    #3. I totally agree with you.
    #5. One of the first feelings I felt immediately following diagnosis, like that night, was grief and loss. I felt like the words “cerebral palsy” robbed me of the child I thought I had which was a healthy, able-bodied baby. Strange to understand when you’re not in this boat but I did feel like I “lost” my daughter. Quickly though, that turned into anger, then just pure sadness. But, days got brighter after that.
    #9. Oia has made us stronger. One thing that works for us and is always so meaningful to one another is to just often ask if the other is alright or “what are you thinking/feeling?” Especially after appointments, a tough therapy session, etc. It always turns into a deeper conversation of our feelings and this is so healthy.

    Can’t wait to hear about your views on adding to your family. We talked about this very thing for two years before we moved forward. I feared many things, mainly I feared having another “special” baby because I just couldn’t image raising a typical child. Hubby thought it nearly impossible to have another child of need, I mean, the odds of that happening TWICE?? Well, baby on the way already has a dx. We are clearly not in control of this life, just how we live it.

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  6. Thanks to all of you for your kind words, they really do mean so much. One of the most important parts of this journey is not doing it alone and I definitely don’t feel alone!

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