Monday, November 7, 2011

The heart of the matter

On Friday I attended a new parent coffee, for parents of children with Down Syndrome. I didn't know what to expect from this coffee, as I'm new to the whole "group" setting. I guess I was just hoping to meet some parents who have been through what Mark and I are going through. The coffee was hosted by a mother who as three children, 6, 3 and 6 months. Her eldest, who has Down Syndrome is in the local Kindergarten and is doing great. She had commented how tiny her daughter was at Piper's age her 6-month-old daughter is wearing the clothes her 6 year old wore when she was 2 years old. Another mother has two teenage boys one of whom has Down Syndrome. The stories shared were worrying to a new mother, i.e. me! Experiences seemed varied but one child wasn't potty trained until he was 11 years old. I couldn't imagine changing Piper's diapers when she is 11 years old but these are things that are reality. Not that I think that every person with Down Syndrome will need to wear diapers until they're 11 and not that I think it is really a major deal in the grand scheme of things but this just highlights that nothing is a given in life.

There was another mother who was also new to the group; she brought her fourth child, only four months old. She shared that in two weeks he will be going for open-heart surgery. That is the current biggest fear that Mark and I have. When Piper was born she saw a Pediatric Cardiologist who told us that Piper has a VSD (Ventricular Septal Defect), which is a hole in the heart between the left and right ventricles. He told us that it was a very small hole and that he was hopeful that it would heal itself but it is still our biggest fear. After meeting the woman whose child is having open-heart surgery and Piper's follow-up Cardiologist appointment coming up soon both Mark and I worry about the possibility that Piper could need to have surgery. She is our precious little Piper and we couldn't imagine her going through this, not to mention the toll it would take on us. Perhaps that's selfish of us but I feel like we've earned that. So fingers crossed (Mark will be praying as he has been feeling recently that there is a god) that Piper doesn’t need surgery and that everything goes well for the little boy and his family that I met on Friday.


  1. Welcome to the blogging world!! You will find many great friends and realize that we are all in this together. One thing I was told in the very beginning that has stuck with me was "Don't worry about the future because you will grow with your child." It is so true. In 2.5 yrs I'm a whole different person and I love the person I am today. Piper is a gift from God!! Congrats!!

  2. Hi there, just hopped over from Kelli's blog. I am so glad you are blogging so that I can keep up with how your little Piper is doing, she is a beautiful little thing! I have a little girl Emily that is 2 with DS and she has completely rocked our a wonderful way! Looking forward to following your journey!

    You can meet us at

  3. So excited to "meet" you! *I* have a Piper, too, who's our designer genes child. The name fits her perfectly- she's our spunky, ornery, pint-sized munchkin. One of the biggest regrets I have is not starting my blog earlier- I think you'll really love it! Welcome to the blogosphere; can't wait to watch YOUR Piper grow!

    Aimee at

  4. I came over from Kelli's blog too :)...Congrats on your beautiful little girl. The name of your blog is perfect, Piper certainly looks precious!!
    The best advice I can give you is simply enjoy your baby :)

  5. Hi! Another visitor from Kelli! Congratulations on Piper, she's beautiful! Try not to worry too much about the future and just enjoy that sweet new baby girl! My little one with Ds is Sutter (22mo) and he is amazing...he changed our lives in the best possible way!

  6. Congratulations on your beautiful little girl! I found you from Kelli's blog. :-) My daughter, Samantha, who has Ds, is 5 years old, and in Kindergarten. Looking forward to reading more about you and your family!