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Faces of CFK: Sarah D.

05 Sep 2017 1:48 PM | Anonymous member (Administrator)

Sarah is the mother of three from Elyria.

Do you work outside the home? If so, what do you do?
I am an occupational therapist at the Mercy Health Children's Developmental Center in Amherst. I am a therapist in the schools and work at Menorah Park Nursing Home some weekends.

What do you do to relax?
I love to craft, read, watch TV, and shop when I have time.

What else would you like to tell us about yourself?
I am a mom to three amazing girls. My oldest two were born premature (26 weeks and 29 weeks) so since day one, we have been on a journey I never thought I'd ever be on. When my second daughter was born, we found out she had PVL (periventricular leukomalacia) which turned into a CP (cerebral palsy) diagnosis. I try my best to work with her each day but it gets tough to balance. I struggle because sometimes I want to just be a mom and sit back and watch my kids play, but I am constantly trying to do things that will strengthen and improve my daughter’s abilities. I am blessed though because I know my path in life brought me to this moment so I would be prepared and able to be the best mother I could be. It has helped me see the needs in the community for our kids and I am working hard to make things more accessible to them. I am scared a lot of the time, wondering what lies ahead, but each day I am beyond blessed as I watch her succeed in ways I never thought possible.

What benefits has Connecting for Kids brought to you and your family?
I reached out to Connecting for Kids when my daughter first got her CP diagnosis. There are no other support groups in the area for cerebral palsy and I was grasping for anything and anyone I could find to make sense of it all. I was connected with some people but I just wasn't ready. Eventually, after coming to terms with the new diagnosis, I was more open to getting involved. CFK has since developed a Moderate-to-Severe Disabilities Facebook group which has connected me to SO MANY amazing families who are in similar situations. I can reach out with questions about therapies, adaptive classes, equipment, resources, etc. The list goes on and on. It gets lonely in the special needs world but CFK offers us an amazing group of people to connect with. We have gotten together for lunches, dinners, swimming, and Go Baby Go car rides at the park, and recently have become very good friends with some truly amazing families who I consider some of my very best friends.

Which have been your favorite Connecting for Kids resources?
I have benefited the most from the Moderate-to-Severe Disabilities Facebook group and the Parent Match program. These resources have connected me to so many wonderful people and so many resources. The Meet and Greet is amazing and allowed me to find programs in the community I didn't even know were out there.

If I could go back in time and talk to myself the day we got the diagnosis I would say...
"Let me give you a hug"...It's a terrifying diagnosis because there is so much that is unknown, especially at a very early age. I would tell myself that right now, it is ok to be scared, and mad, and depressed because this is not what you had planned. I would tell myself that things will get overwhelming, all the appointments, the specialists, the therapists, the equipment, the home exercises, etc. but it will be manageable. I would then tell myself that this is still your child, your love, and each day, you love that child the best you can. You will realize that sometimes, you don't see the diagnosis, you just see your child as who they are and you love them no matter what. There will be many days, more than not, that you hate the diagnosis and you still wish for things to be different, but you will begin to see the world from a whole new perspective and cherish the "little" milestones and huge accomplishments. Take support from family, friends, and whoever offers it because you will need a break and seek out families in similar situations.

I get embarrassed when...
I get embarrassed when we go in public and I have to carry her, help her stand, or constantly help her sit up. We recently got a wheel chair, and I was scared to death to get it, but since we have gotten it, it has become my best friend.  She is no longer the big girl in a stroller, she is a 4-year-old in a cool pink wheel chair and it gives people a little better understanding of what is going on with her.  I get embarrassed when I have to lug the walker, a high chair, an adapted chair, an adapted bike, an adapted car, and/or braces when we go to a get together or go out in public. I would do anything for her to be able to sit in a regular chair, walk and ride a regular bike.

I’ll also say, between the years of 2-4 for me were very hard.  I was faced with the reality that my child is not where she should be. Once I came to terms with her deficits and her own individual strengths, it has made it less embarrassing to be out in public because I have embraced who she is.

The best thing about parenting a child who struggles is...
I see small miracles happen each day with each new skill gained, no matter how small. The long and difficult journey makes it that much more rewarding! She is becoming more aware of her skills and now also becomes excited and proud over the little things like holding a cup with two hands!
We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
Welcome to Holland, by Emily Pearl Kingsley, is an amazing poem and was a huge help to me when we got the CP diagnosis. I frequently think about it and it helps me to remember that this journey is not the one I had planned but it is still beautiful. Another great Facebook group is: CP Warriors, Mommies, Daddies, Grandparents and Caregivers. It is run by a mom of a girl with CP and has members from all over. It is a wealth of knowledge and support for treatments, therapies, equipment, etc. I have reached out many times to get information from others who have already gone through it!

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