I received a message yesterday from my sister to call her right away. I was physically and emotionally exhausted but I called. As I listened to her on the other end of the line say, “My friend has a friend with a 5 week old baby just diagnosed with Prader Willi Syndrome, can you call her please?” Normally I would have hung up the phone and called her straight away, however I live by the new principle of I CAN’T GIVE TO YOU WHAT I DON’T HAVE! So I told my sister to give me 2 hours and that I would call her. I did call and left a message. Blaise then called her a few times too, haha!
We finally connected this morning and it was beautiful. It felt really amazing and interesting to be the one comforting. I sat and thought to myself what would I want to hear if my child was newly diagnosed? What would I say to me 3 years ago? What are the most important things to really get across?
So I started with the most obvious. Please allow yourself time to grieve. There is a grieving process and we often overlook it and the role it plays in the healing process. Then it was the obvious things to be HONEST. Here is the truth my son is amazing, Prader Willi Syndrome sucks but we are a pretty normal family, living a pretty normal life. I also found myself saying something that nobody said to me in those first few days. It makes such sense to me. FIND WHAT WORKS FOR YOUR FAMILY AND DO THAT! As long as your child is healthy, their labs are good and they are growing then you just do what you need to do to make your family work. I love how natural that felt. I love how it releases you from so much guilt over doing things the “right” way or the “wrong” way.
I shared honestly with this beautiful woman that there will be down days, but there will be so many up days. So many days filled with joyl
The most important things I found myself saying to her was very real and true to my heart. I told her the following:
AS THE PARENT OF A CHILD WITH SPECIAL NEEDS YOU LEARN TO APPRECIATE EVERYTHING even the smallest things mean so much. This not only applies to your child with special needs, but all your children. You take nothing for granted and learn to see the beauty in all the things that your kids do.
It all felt so natural coming out of my mouth,it all felt so real. When my sweet angel was diagnosed I was blessed to talk with 2 amazing people in that first day who have family with PWS. It was a life saver for me, it was my life raft because I was drowning in sadness.
Now I tell you this: 3 years later PWS is just a part of my life, it is my “normal.” I LOVE MY SON WITH EVERY OUNCE OF MY BEING. I don’t sit around and wish he didn’t have PWS I don’t him any other way. He is blossoming into such an amazing young man, and he and his brother are growing up to such amazing young men. I am blessed. My child says please and thank you, he tells me he loves me, and he smiles all day long. I don’t care what that genetic test says, he is perfect in my eyes.
Yes, I have my Broken Heart Syndrome moments, but they are getting less and less these days. As I am on my spiritual journey and deepening my love for myself and practicing loving myself, it is easier to accept all others around me. I love my child just the way he is PWS, Autism and all the rest of the wacky things that his body decided to give him.