To Gena, a Debt of Some Sanity…

I do not think it is fair to place the responsibility for a person’s sanity on the doorstep of another, so I try to be fully accountable for myself that way, and yet, my friendship with Gena has had a huge role in preventing a plunge into the break-down abyss. She prefers to keep a low on-line profile, so I’ve put up a picture of one of my favorite flowers for one of the best people I know.

She has always listened patiently to my fears, concerns, and heartaches. But some of the conversations I have valued most were about cook books, current events, literature, religion…I love that our friendship is a safe place for those kinds of discussions. To be able to also talk about something other than the darkest my life has brought me the past few years has helped me to hold it together- to see some of the parts of “me” I don’t get to spend much time with anymore.

Sometimes you learn by painful experience when you have a kiddo with significant struggles that your social circle will atrophy and people will mutely vanish from your life. Gena, thank you for standing and staying in my circle and helping me feel like things weren’t always so dark- it has meant everything to me. I love you and you are part of the family of my heart.

A Note on Last Week’s Post:

Hannah reminded me after she read my post last week that she helped make some of the Play-Doh figurines we used with Tony and the cars. So I want to make sure she is given credit too…Hannah, thank you for helping with that- and sorry I didn’t think to include your contributions!

Some Reading To Consider:

Living with Trisomy 18/Edwards Syndrome, by Josie Murrell

For this book, getting the e-book is the way to go, all paper copies available on the market are being sold for amounts I can’t even begin to excuse. I purchased mine from Kobo books, but there are multiple vendors selling this e-book, which chronicles the few short years of life for Melissa, Josie’s youngest child, who was born with Trisomy 18. Although Tony’s trisomy is different and he is reaching a higher level of functioning then sweet Melissa, we had a few similar experiences in the beginning, such as Tony for a couple of years struggling with and often refusing to take food from anyone but me or his vomiting at certain scents. I think this book does a great job of balancing out a portrayal of the overwhelming stresses that can be placed upon the families of lower functioning kiddos with chromosomal disorders with the clear love and joy Josie still felt about being Melissa’s mom.

47 Strings Tessa’s Special Code, by Becky Carey

This book is a bit harder to find anywhere that isn’t Amazon, however wisconsinmade.com also sells it new (and that’s where I bought mine). This is a touching and beautiful children’s book written by Becky to explain Down syndrome (Trisomy 21) to her son after his little sister was born with this condition. 47 Strings is a great resource to be aware of if you work with young children in any setting because Becky explains chromosomal duplications in a way that makes it easy for them to understand. Because of the simplicity and clearness of the explanation, I also think it could be used as a starting place to help kiddos understand any chromosomal disorder, which is why I purchased a copy (I am hoping to use parts of it to help Tony understand his own trisomy, which has no books written about it).