I have been wanting to write to you for awhile.
I know how crazy this journey can get when you first get a diagnosis, see i have been there myself.
I felt all the feelings that are taking over you now.
It is all so overwhelming ...
Understanding and wondering why.
Feeling that you must have done something wrong while pregnant when you followed everything by the book.
Looking at your child and having a feeling of guilt taking over you.
Finding yourself crying because you cant just understand why and it is all unfair, i agree with you...
The first time you find out, when you hear the imaginable from your doctor, it feels like your world shattered.
Then it comes the grieving. Grieving for that child you imagined you were going to have. The life you had planned for him/her. Grieving for that unknown future and not knowing all your child will accomplish and all the care he/she might need.
You cry once again, often you hide yourself to let it all out because you don't want anyone else to see how hurt you are.
Because truth is you don't want anyone to see you cry for that child you are holding in your arms because the thoughts going through your head is indescribable. You want people to see you only smiling but behind that smile hides a huge sadness. Then you think no one wouldn't understand you, your fears, and the feelings taking over you. Us parents make this life planned ahead for our children and all the sudden you are not sure if this dream will be fulfilled.
You hear things from your doctors such as she may not walk, she will need therapy, she will never be independent, she will never talk.
I have been there too, i heard it all. I felt ashamed for feeling bad for my child and i was scared that no one would understand what i felt. I would look at her and wonder what her life would be like.
Who will care for her when I am no longer in this world. Will she attend a normal classroom, will society accept her when I am having a hard time accepting her differences, will she get married someday?
You are not alone. I have wondered myself all those questions too. I wondered if I could do it. I didn't have that strength in me.
Then it comes to a point where you want to tell everyone close to you what's going on with your child. Why you have been distant, why you are not out introducing your baby to everyone, why you not hanging out anymore and being out and about.
They don't know you are between doctors appointments, or in a hospital holding your child tiny hands and praying that things will get better. Then you find yourself dealing with insurance, or in therapy with your child and the little time you have left when your child lets you, you are trying to just sleep and get some rest.
While you are sleeping you are thinking of tomorrow and what else more you can do for your child. That is all you have in mind. Am I doing enough? Is it my fault? Tears falls down in your sleep and you end up never getting your little rest because before you know that tiny person that you love above all, despite all is going on needs you once again.
You find yourself in a pajama all day because you are too exhausted to try to fix yourself. You can't seem to find the sunshine, after the storm hits you with this terrifying news.
Truth is no one can really understand how you are feeling unless they have walked that special needs path. People can only imagine what is it like, but they don't get it. They don't see your hard work all day to make your child learn one small thing, how you are fighting for her rights and how hard at times it is to keep your head held high.
I have been there myself.
How do I know it?
I found mine.
With time it will become your new normal.
With time you will find joy and you will embrace every moment.
With time the smallest milestones will become a victory.
With time you will know that this is just how it's suppose to be.
With time even if you don't see it now, the doctors appointments and hospital stays will become less frequent.
With time you will feel proud to share your child journey and tell the world about it.
People will understand why you cancel last minute or at least they will try to, but that will happens when you will be ready to talk about it.
With time you will find support, talking to other families and sharing our story has became the best therapy for myself.
With time you will forget all those awful feelings you once felt. You will only feel love, you will find strength for this journey.
You will realize that the little miracle you are raising is exactly who she is meant to be.
You will be proud.
You will smile but you will also cry. Cry of joys, cry of uncertainty.
You will still have days that you can't just help but compare your child to others, but it's okay. I still do it, but it motivates me to work with her harder.
I can tell you one thing, you are not alone and all you are feeling is normal.
There will be sunshine your way it will clear all the cloudy days.
Don't let the fear of the unknown take over you, the unknown has lots of magical moments.
Another special need momma.