Dear Special Needs Parent,
I see you. You’re questioning everything you’ve known at the beginning of your journey. I see the person you are and see the potential of the person you will become. I know the struggle you’re going through and I know that you don’t see an end in sight. Every day is a new challenge, more difficult news to digest.
I’m writing to you to tell you that you can do this. Every day is a new day. This little person in your life that you are just learning about will surprise you and fill you with joy like you’ve never known. It will be hard, and some days you’ll want to quit. Then those eyes will look at you (even if they can’t see you, they see you) and you’ll know that you’re doing this for no other reason than love.
There will be days when you know you need more sleep, that you’re wearing the same outfit as the day before, and the coffee will run dry… and it will. People will give you unsolicited advice, and they’ll tell you that they don’t know how you do it. You’ll smile and politely say thank you. On the inside, you’ll be screaming profanities at them.
I’ve been there. You just want every. Single. Person. to just leave you alone. You want to get in the car and drive for hours to nowhere just to get away from everything. That does not go away with time, you’ll constantly be on the verge of running away… and that’s okay.
The heartbreak you feel at the loss of a life you thought you were going to have, that does ease. The realization that you, in fact, did not cause this to this little human, does come with time, be patient with yourself, you deserve it. Becoming a special needs parent is an amazing journey, though the struggle is real.
I wish someone had told me at the beginning of this journey that it’s okay to cry silently in the shower. It’s normal to want to run away, and sometimes it’s even encouraged. I wish I had realized that my friends and family close to us really did want to help and weren’t feeling pity or sympathy, they really were empathetic.
It’s also ok to scream at the top of your lungs on your way to work because you have so much pent up anger from, well, life. It’s fine to be mad at the hand you’ve been given. The more you learn what your new norm is, the less angry you feel. Give it time, it does get easier with time.
I wish I realized sooner that just because you do have a career, doesn’t mean that you make enough money to cover all the expenses, because you’ll learn soon enough that insurance companies suck. It’s ok to look for services that your child will need, and then be mad when you don’t qualify. Be mad, get angry. You’ll need this for when you start navigating appointment scheduling, denied claims, and inconsiderate people in life who think it’s ok to park on the line next to a handicapped spot.
When you notice something off about your child, trust your gut. Find a pediatrician that you trust, that you have no fear of talking openly about your child. Absolutely no one will know your child better than you. The better the relationship you have with your pediatrician and other specialists, the better the chances of giving your child the best possible chance at life are.
Trust yourself, believe in yourself. Find yourself on this journey. Life has changed, that doesn’t mean it won’t be fun, enjoyable, and filled with love. It just means that it’s a different road and terrain. You will figure this out, and you will be stronger than you ever thought you could because some days strength will be all you have left. Be proud of being a special needs parent.
You will do this, I believe in you.
From Another Special Needs Parent
Read our journey here.