Tuesday, September 4, 2012

Further down the road and From Grief to Celebration

I loved the feed back I got from my last post. Definitely got me thinking and I loved hearing the different perspectives. One thing I had gravely under thought was that probably the main reason there are less parents of older children with Down syndrome speaking out and posting pictures is that they are respecting their child's wishes and privacy. I don't know how I would feel if my mom started a blog about me, so I totally get that. So if that's the case, I wish there were more bloggers like Sarah. And Cindy and her daughter Beth. And then I came across this little post listing a good handful plus of teen/adult bloggers either parents of a child with Down syndrome or have Down syndrome themselves. Definitely archived all of these!

 For those of you who have told me to write a book, my story so far has already been written by numerous others. They are out there. Good ones. Telling my heart from all the different angles of pre-diagnosis, late diagnosis, birth diagnosis, faith... and most of the books talk about the beginning. The diagnosis. The shock. Because the beginning is hard. The journey to accept what life has given you is hard. And I admire and cherish every book or post that shows the honest war you go through between heartache and unimaginable love, each one serving a different taste of what you may experience to walk in our shoes. Some sappy, some funny, some incredibly insightful. all heart-wrenching at parts. But the ones I have read so far are just stories to me. Beautiful stories. Reenactments of something I have already been through.

I am craving to know what happens next.

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome

From Grief to Celebration- Margaret (Gary) Bender. A book about what happens next. I am so glad I read this gem of a book. Its not fancy, like most I have read. No flashy photography or abundant metaphors. But this 74 page book has more enlightening information in it then I have read yet anywhere. She explains what life is like not only giving birth to a child with Down syndrome, but raising a child with Down syndrome. And she does so in a way that is easy to read, easy to follow and sticks in your mind. I love that she resources books that she read and books that she read to her daughter Alex ( definitely going to get Where's Chimpy to read to Fiona). She hits so many key "what if" questions we have starting out. She touches on all the hard things you have to deal with socially. And gives you wisdom from personal experience on how to handle it.

Life with a child with Down syndrome is as unpredictable as anyone else's. Its not so much about what our children will be able to achieve, only they will tell us that. But there are some unavoidable bumps you hit when it comes to Down syndrome. Most of them being social- how other people treat your child and your family. Gary gives a lot of incite into how they went about these bumps, what they did to soften them or overcome them, both things that worked and things that failed. Good advice only someone who has been there can give.

Like she says in the book one of the most invaluable things is meeting with people face to face... she makes you feel like you did this with her by reading this book. She was able to take things that you are handed in generic pamphlets and huge text books after your baby is born, and compacted it into a short and personable read. This book should be placed in the hands of every parent faced with the diagnosis of Down syndrome of their child. It truly is a gem.

If I ever write a book, I want to wait to be able to give advice and incite like Gary's. My dream, that Fiona would write it with me. I may have completed the first part of coming to a place of acceptance of my rocky road, but there are still a whole lot more hills ahead to conquer. This book is invaluable to me, and I will cherish my personally signed by Alex copy.

I have talked to two people recently who are dealing with having an empty nest. Its funny to me how one of the fears we have about having a child with special needs is them never leaving home... and how when the time comes for children to leave home, these moms said they would give anything for their child to always live with them. Fiona's ITDS said, " Knowing what I feel now, I would have been elated if someone had told me my daughter was going to have to live with me forever". Blessing in disguise.

If anyone knows any self advocates or books or blogs that are out there pertaining to those in high school or older with Down syndrome, leave a comment and let me know.


  1. I really like confessionsofthechromosomallyenhanced.blogspot.com.
    Thanks for linking to the list - I think I'll be doing some reading tonight. :)

  2. ditto the above comment, one of my fav blogs and a dear friend as well:)

  3. gardenofeagan.blogspot.com deals with 3 children with Ds (one bio, 2 adopted) and her daughter is in the 10th grade. Love your blog!


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