We are Special

26 May

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.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

7 Responses to “We are Special”

  1. jamesvincentknowles May 26, 2012 at 7:15 pm #

    “It felt really amazing and interesting to be the one comforting.” Just this single line alone made me weep a bit, a sort of warm, hard-core & honest mixture of joy, humility & hamanity ~ and I don’t mind saying so. Thank you, Rachel.

  2. jamesvincentknowles May 26, 2012 at 7:16 pm #


  3. Amy May 26, 2012 at 7:45 pm #

    Paying a blessing forward has a way of healing our past wounds…you are quite the beautiful, AUTHENTIC, strong mother Blaise needs, Rachel; and just in doing so, you inherently give permission for other mothers to believe they can be the same for their own.

    Thinking of you with love, xoxox

  4. barbarapotter May 26, 2012 at 7:59 pm #

    Beautiful Rachel. So happy that you could be there to help. I remember the hell of the diagnosis and the hell leading up to those 3 years not knowing. I see the beauty now of my precious grandson and how he holds my hand like he never wants to let go and how he calls me with the IPhone and that sweet voice says “hi mom”, heeheehee and giggles. How he would never tell an untruth even if he did something he should not have. How he loves his teachers and family and friends like each person is the most special person in the world. How he loves to play music. How you can never get angry with him even if he accidentally drops his IPAD in the toilet. How silly he can be with that smile. How there is so much joy being around him. How both he and his wonderul little brother protect each other. I can go on and on and on.
    I am proud of you and the warrior mom that you are. Live mom-mom

  5. Liz Bird May 26, 2012 at 8:02 pm #

    Your courage is so inspiring. Thank you for continuing to inspire me with every post.

  6. nikky44 May 27, 2012 at 3:17 pm #

    You are strong!!! I admire your courage!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

<span>%d</span> bloggers like this: