Hydrocephalus Canada

An Open Letter to Mom's

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I know you are hurting and I understand the pain. I know you didn't sign up for this. I know this is the exact opposite of what you dreamt for your life, your family and your baby. I know your scared! That's okay. It is scary. I know you are devastated. That's okay. It is devastating. I know you feel guilty but DON'T!! You did NOTHING TO CAUSE THIS!!!!

You will see many doctors. You will be labeled "high risk". You will spend many hours waiting and wondering. You will be poked, repositioned, checked, and ultrasounded many times. You will be given "a choice" by your doctor(s) and maybe even told which one to make. You will be presented with a diagnosis attached to a "doom and gloom" prognosis. The doctor(s) will have to tell you the worst-case scenario, sometimes it's right on the money but most often it's not. The thing with Spina Bifida is that NO ONE will be able to tell you what your child will be like. BUT the good ones will tell you the ONE thing that will always be true no matter the outcome... "Your baby will be beautiful and amazing. You will love him/her and your heart will be full because of them." Please, give your baby a chance at life. He/she will likely be a fighter by nature and will redefine Spina Bifida in every way. I promise you that he/she will not be a burden and you will never be able to imagine you life without them!

Expect people to treat you different. THIS WON'T LAST FOREVER! Out of awkwardness or ignorance people will say the strangest things to you. Respond in grace, knowing that many comments were well meaning. Expect that some people will avoid you in order to avoid the GIANT SPINA BIFIDA ELEPHANT in the room. Do not shrink in shame! Bring up the subject, deflate that elephant, and welcome the compassion. Accept the meals, the money, the baby showers and the offers of babysitting your other child(ren). You know you need all of these things and it will bring great joy to the giver.

Right now grieve for what you have lost. Bury the dream that you had. Have that funeral, THEN pick up the pieces. You will be okay. Life will carry on. The future is bright! Allow yourself to dream a NEW DREAM. Allow yourself to dream about the day you bring your precious bundle home from the hospital. Allow yourself to dream of the day your baby smiles at you and says "Mom". Allow yourself to dream of his/her first stander, walker or wheelchair. Allow yourself to dream of the pride you'll see in their eyes! It's beautiful, isn't it?

You will be a great Mom! You will step up to the plate and become a person you never dreamt you could be. You will be their best bud, most passionate advocate, greatest protector, and biggest cheerleader! Lean on God and he will give you strength you could not possess on your own. He created you, he created your baby, and he loves you both with a "Never stopping, never giving up, always and forever love.".

Know that there are many families going before you, living with Spina Bifida and thriving! Know that these families stand beside you to be an encouragement to keep going. Know that there is so much support out there for you and your child, emotionally, financially and physically. Get plugged into support groups online and in person, if you can. Feel free to contact me at any time.

Love from a proud SB Mom, Amberly.