I held my son yesterday rocking back and forth ever so tight telling him over and over that it was going to be okay, even though, I knew it was not going to be and that any second he was going to let out a scream I to often hear.
I knew it was coming, because anytime I even so much as touch his feeding tube he wails in uncontrollable pain.
I have lost my strength as a mother in hearing these screams, and I have cried many tears with him while praying that God would tell me what to do. I have begged his doctor to please fix it with no solution to be had. I reached out to a friend.
I reached out to so many friends, yet, I still felt so alone in my journey of trying to figure out what could be wrong.
I became helpless in my emotion, and inside my guilt I stopped advocating, but the worst part, I stopped fighting for him.
In my anxiety of emotions I became complacient in his doctors inability to see how much his pain was effecting every part of my life, and my tiny child’s life.
I thought that I was alone.
I thought that I was the only one fighting for my child.
I thought that I was the only one advocating for my child.
I thought that I was the only one celebrating the wins for my child.
What I found out was that I am not alone, and I never will be. I have a village of mothers, grandmothers, nurses, friends, therapists, and so much more all with me at the sound of a word.
They are here every time I call and they are here every time I can’t seem to stop the tears.
They look at my mountain of pictures and always give the best advice they can, and they tell me where to go when I feel like help is no where to be found.
When my supplies to help stop the burning pain of my child’s stomach contents leaking out of his feeding tube and on to his belly ran out, I called the woman I always call, she is by far the strongest woman of them all, and without a blink told me to come over.
I left with mountains of supplies.
I left with supplies for my sick toddler to help keep him out of the hospital, the place it seems we always end up.
I left with so much supplies it filled my kitchen table.
I came home, took a deep breathe and went through the steps of what needed to be done to help my child.
I prayed to God, that this would work. I prayed that the pain was going to stop and that he was going to be pain free.
One layer at a time, I put on ointment after ointment over peeling, burnt skin from the acid of stomach bile…
He cried, and I prayed, I told him it was going to be okay..
Gauze after gauze, I put on every layer I could fit under neath his tiny feeding tube to help create the tightest fit possible, again I prayed as he cried…
When it came time to feed him again, I held my breath. I couldn’t take another second of the crying, and I couldn’t accept that we were mean’t to just accept that feeding my child would be the worst pain he could endure.
As I started to put in his little extension into his feeding tube, he looked up and smiled at me, I sat there amazed…
As the food entered his belly, he played with his rattle, with no sound to be heard, my heart smiled, and I became over joyed with happiness.
For the first time, he no longer cried, he no longer screamed, and I had finally fed my baby without going into the bathroom and bursting into tears from the guilt of not being able to take away my babies pain.
I sent so many messages, I was exploding with happiness, but what I found out was that so were they.
In all of my nights of silently crying and never saying a word because I thought I was so alone, I wasn’t…
I have been lost in the woods afraid I would never find my way out, while my village was standing with me telling me over and over to just take their hand that they would help me find my way…
I believe that fear, anger, and guilt have a funny way of making us feel like we are all alone in a world full of love, because we can’t see the love of others through the sadness of the depression we have gotten stuck in..
We learn to become cold because it is after all the only way we can survive through the constant horrors of constantly seeing our children have to fight battles that no adult should ever have to endure.
My three year old child has a cold, but all I could think about as I saw him happily playing with his toys was, if I was going to wind up sitting on the floor outside of a trauma room praying God doesn’t take my baby again. I couldn’t see that he was okay and thriving.
I learned for so long to stay quiet in my ugly thoughts of fear, that I quit asking for help. I became silent in my emotion and accepted that it was better to be alone then it was to ever talk about “the ugly elephant in the room.”
I have become an amazing advocate for my children, and I can be a quiet mother, or I can become the fiercest lion fighting for her cub inside of a hospital room in the matter of seconds, but when it comes to advocating for myself, it seems all of the lion in me, sits down and all of the quiet in me stands up.
I am slowly learning that though I may feel alone, I know that I am not.
I have so many women, that I could call at two am, and they would answer the phone in a heartbeat.
I have sat in PICU waiting rooms with these women while my child fought for his life, and I have shared milestones of my children with these women and they have cheered them on just as much as me..
These women love my children, they love me, and they are my village…
I am a special needs mother.
The women in my village, saved me, and I will never forget that…
The battle of special needs motherhood can be lonely, it can break you into a million little pieces until you have nothing left of yourself, but know that you are never alone inside the village of women in Special needs motherhood!
You have a village, you just have to find it!
To the women in my village, you will never know how many times you have saved me from the dark days of my thoughts…
Special needs motherhood is hard, on the hardest days, rely on your village, they will always be there with open arms..
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