If Only I Knew …
Dante Rock Climbing
Over the March break Dante went to camp. It’s a terrific camp that has a ton of different activities for the children. One day Dante’s camp counselor called my wife to tell her that Dante climbed the rock wall! You can see him almost at the top left in the picture. When I saw the picture the first thing I thought was, If I could have seen this picture when we got the diagnosis of Prader-Willi Syndrome it would have saved me many sleepless nights.
If only I knew, Dante could reach the top.
If only I knew, how focussed Dante would be on achieving his objectives.
If only I knew, how competitive he would be.
If only I knew, how happy Dante would be and how much happiness he would bring our family.
If only I knew, how lovable he would be.
If only I knew, how much Dante would keep our whole family on track.
If only I knew, how funny he would be.
If only I knew Dante, I could have skipped a lot of the heartache and got right to loving him.
… but I guess that’s the challenge with life. Most of the time we don’t “know” until its too late. The key therefore, is to find something you can believe in.
I’ve learned a good place to start is to believe all of our children are awesome … because they are!
Victoria Says:
Thank you for this post – it brought tears, the good kind, and a reminder to keep looking forward, have faith, and focus on what really matters. Keegan – we went to school together at HSC – but I didn’t know about your little miracle man Dante until today. I’m now a mom to a developmentally-delayed little superman myself (soon to be 4 years old). While I would never compare my experience to yours (or anyone else’s), I do know all too well about the heartbreak and sleepless nights spent worrying about a child. You have expressed so beautifully in this post what I am just starting to realize myself – that my little guy is a blessing just the way he is, and I should stop focusing my energy on trying to change him and refocus on all the happiness he brings us and the amazing things he continues to teach us every day.
Posted on March 19th, 2012 at 11:11 am
Rebecca Says:
Thanks for sharing your story. As a grandmother of a PWS child, I will keep your story in mind always and know that she will also succeed!
Posted on March 19th, 2012 at 5:13 pm
Angela R Says:
Thanks for some hope and inspiration! Our 6week old daughter was recently diagnosed with PWS and I’ve just been muddling through trying to learn about it…. There is a light at the end of this tunnel! 🙂
Posted on March 24th, 2012 at 12:42 pm
Karen Balko Says:
Your words are far reaching and will save a lot of parents grief and worry, allowing them to just enjoy their child. Thank you for opening your heart and sharing. I will pass this on to many of the new parents who were struggling as you once were. Karen Balko, the PWS Clinic, NYGH.
Posted on March 26th, 2012 at 2:42 pm
nina gagnon Says:
i want to say thank you for such a beautiful writting my brother had pws and no one understood about it .he grew up to be a wonderful man god called him home at age 27 there is not a day that goes buy that i dont miss him dearly .alot of people didnt know about pws so they just called him fat but he was wonderful he kept our family together i am the oldest of 8 .i am truly blessed for all the laughter and warm my brother brought into my life. i truly believe that the people with pws have more love and kindness then. all the world put together and they bring so much joy to our hearts . he was a high school grad i know everyone with pws will be all they can be the truly have the biggest hearts ever.
Posted on April 2nd, 2012 at 11:31 am
Isabel Marisa Coelho Says:
Thank you so much for sharing.
Its amazing how many mums and dads
see themselves (ME) in your words ! My five years old daugther PWS cant stop surprising me every day .. if only i knew .
Posted on April 3rd, 2012 at 8:55 pm
Martha (marty) Stuart Says:
Keep the Hope. My daughter with PWS is 35 years old now. Years ago it was the Children’s Rehab Hospital in Pittsburgh, Pa. USA who taught us and her to be successful and how to rise above the syndrome. It is our Lord Jesus who gave us the hope for things not yet seen and then faith to walk in that hope daily. I still enjoy every day with her. Many come to our home and walk away totally blessed by her countenance and unconditional love.
Posted on April 6th, 2012 at 9:13 am
Carol Lee Says:
Thank-you!
Posted on October 28th, 2012 at 5:05 pm