My story Part 2 – 8 long months waiting for an answer

Shortly after Josh was born, we were told that the symptoms he had (low muscle tone, no sucking reflex, no cry, always happy and contempt, no drinking) were just symptoms and they are a part of something bigger.

I did not believe a thing the doctors were saying. I kept telling the doctors, that Joshua would just need to come home and be with his family – get used to life out of womb. And that maybe he is just a quiet, sweet baby.

They told us that we needed to go with him to a genetic consultation and gave us an appointment approx. 4 months after his birth. It was a cold December day, and we took Joshua to that special clinic.

Everything felt to me so cold and I just wanted to be at home with my boy. I have had enough from doctors and everyone telling me, that my boy was suspected on Prader Willi Syndrome. I did not want to believe it. I could see all the symptoms, but still waited on God to do his magic on Joshua.
I always trusted in him and he always got me through anything, life brought into my way so far.

And I knew, that if I would just believe it with all my heart and pray with all my heart, then it´s like done. Then Joshua would be a normal and healthy boy.
So to me there was no way Joshua had PWS (Prader Willi Syndrome).

We went home and read on the internet way too much and way too many extreme case stories of PWS. We were already in shock after seeing that Joshua had almost every symptom of this (for us) terrifying syndrome.

Dark months settled in and dark thoughts and depression were my companions.

I am and will always be so thankful to anyone who prayed for us during that time – when I couldn’t pray and when I had no strength to say a word to God. It made such a difference and I know that God heard your prayers!

Another 4-5 months passed by and we received THE call. A doctor called and said „I´m sorry, the results came back positive: Joshua has Prader Willi Syndrome “. I felt like God disappointed me. He let me down. He didn’t step in like I thought he was going to. How could he do this to me? How could he let this happen to me, to my baby? For a long time after that, my heart was hardened, and I was so careful with trusting God. I mean, he disappointed me big time already. I was not going to trust him so easily again.

Broken hearted, scared and without hope on the horizon, HE still loved me. He still had hope for me. He still saw value in me. He still looked at me and called me precious – even if I felt like I could no longer trust him or give him my heart. I fully intended to protect myself by building walls around me, so no one could reach my heart again. I desperately wanted to be so safe, that nothing could ever hurt me again.

I have no idea how and when, but God was slowly and surely tearing down the walls, that I was trying to put up and showed me who He is. That is who my God is. His love is unconditional, and He made me get up without fear of the future! He gave me strength each day. He held me in His arms and didn’t let go until I was done crying each time. He was there all along, even if I didn’t always feel him. He was there, when I sang my heart out to Him, praising Him and He worked miracles in my heart. He healed my bleeding heart and turned my life around.

He made a new path for me to walk on. He was the light in my darkness.

I was mourning the boy I thought I was going to have, the life I thought we were going to spent together. The plans I had for us were all gone. Somedays I still mourn, but differently. Those hard days when I’ve been trying too much, to keep things together by myself, are the days when I long after a normal life. I don’t know, if this will ever change, but I’m just being honest with how it is and was.

You might read these last lines and think „Girl, you have the sweetest boy, why did you want someone else?“. Like most people, I didn’t think for a second, that my baby would be severely disabled and that our life would change so much from his birth on. I dreamed of going home with- him and do all the things I used to do with Jason, with Joshua, too.

Now don’t get me wrong: I would never want to exchange my Joshua. God gave me another perfect boy! But I felt like he was broken in the beginning and I did ask God to heal him and „repair“ him. I definitely was not blind, and I could see that he was not thriving and so many things just didn´t add up.

Somewhere along the way, I realized that there was no reason to ask God to repair my Joshua. If God made him this way, I was going to love him and be by his side for as long as he needs me. My definition of a “perfect child” wasn´t God´s definition as well.

See, I had my plans about how our life should look like and how things are supposed to work out, but I am pretty sure, God laughed out loud, when he heard my tiny plans. Because I am more than sure, that His plans are an infinite time better and bigger. By the way, I believe, that his plans work for our good, even if it feels like the end of the world. I am done doing plans, about what I want. I live for Him and I trust Him that He knows what he’s doing.

It’s hard to humble myself sometimes, as I am a very stubborn woman and have very strong opinions, but it’s the best feeling ever, to know that I am in His hands and that I am doing what He calls me to do. There is such a joy and fulfillment in doing, what He calls you to do!

Love, 

Daria