Embracing an Unexpected Journey: Advice to New Parents of Children with Disabilities

Every pregnancy comes with its own unique expectations and experiences, and as that due date draws near the excitement starts to build. When you finally hold your child in your arms, you can’t help it, you unconsciously begin to envision their future, creating certain pictures in your mind of what that future might look like.

The words: “Your child has Cerebral Palsy,” could rearrange the picture. Not only might you go through a myriad of emotions, but you may also have to deal on some level with the fact that all the awesome dreams for this child may have the potential to never come true, or take an entirely different track than what you may have initially envisioned.

If you’re raising a child with Cerebral Palsy-- or any other disability for that matter--and you’re experiencing many different emotions, I have three words for you: IT IS OKAY. It is okay to feel whatever it is you are feeling.

If you vacillate between feelings of anger, guilt, sadness, numbness, hope and/or excitement for the future,  it is fine. There is no right or wrong feeling when it comes to how you should feel because each parent will have different experiences and process them differently.

So, where do we go on from here?

Get Information. Your child’s pediatrician will be able to point you in the right direction for care options for your child.  The internet can also be helpful for finding resources, like MyChildWithoutLimits.org.

Build your own personal care regimen, that includes breaks where you can recharge and take care of yourself.

Seek out community. Some families really benefit from meeting others going through similar experiences. But, whether you choose to seek out other CP families or not, it is important that you develop a support system around you and your child. It can be the relative across town, the neighbor who works from home, or a phone tree of other parents in your area.

Find safe ways of verbalizing, or externalizing, your feelings and emotions. See a professional if you need one. There is no shame in needing to seek help.

Celebrate your parenting journey. Your child’s development is unique.

Find new inventions that will make your life easier. I just found the EZPZ Happy Mat from http://www.ezpzfun.com/ which would a life saver for any mother trying to feed a child with any disability that affects the ability to self-feed. For more helpful tips and tricks for life with CP, check out these awesome suggestions from a young woman living with cerebral palsy.

Most importantly, cut yourself some slack as you experience your unique parenting journey.  It might look different than what you may have imagined, but it will be totally worth it in the long run. Your strength and confidence will come with more experiences , including  mistakes.