About Us

My name is Ellen McIlhenny and I’m starting this blog to chronicle the process I go through to write a book about my family’s life journey with my 21-year old son Ben.  This should give me about ten years of material, because I expect it will take that long to complete the book.  However, if by chance my frequent bouts of “writer’s block” start to diminish and I do finish it sometime in the next year, I plan to continue writing about (hopefully) helpful hints on navigating “the system”; that is, if there is anyone out there listening by then. Ben was born with a rare chromosomal disorder called trisomy9p t(9:21).  Simply put; there is an extra piece of Ben’s number nine chromosome located on his number twenty-one chromosome.  It’s so rare that it doesn’t even have one of those fancy syndrome names.  It left Ben with an intellectual disability rated in the moderate range.  In addition cerebral palsy has put physical limitations on Ben that can sometimes be quite frustrating.  He is non-verbal with the exception of a few words, and to my delight, “Mama” happens to be his most used.  When Ben was born internet access was not commonplace as it is today and what little information that was available came in the form of just a few case studies provided to us from the medical professionals.  We were certainly in uncharted territory.  Input from other parents on what to expect was non-existent.  Today we are blessed with a blogosphere of parents and caregivers who are willing and able to help young parents through the initial shock when they realize that their child will forever be different from his or her peers; not to mention the additional medical care involved with these very special children. It is not my intent with this book to offer any great expertise on how to deal with this unique situation, but it is my hope that I can help some to understand that those many thoughts and feelings which accompany this kind of news are normal.  Ben is a blessing to our family.  His forever innocence and unconditional love have given me so much more than I will ever be able to return.  Each morning when I enter his room to wake him, I bend down and whisper in his ear, “thank you God, for Benny”.  His eyes open wide and he greets me with a hug and a “Mama”, as if he hasn’t seen me in years.  Who could ask for more? Note: This blog is a chronological account.  If our story interests you; please take a look at the older posts.  It all starts on Ben’s very first day.

12 Responses to About Us

  1. Jessica says:

    Hello. I am Jessica, mommy to Kaylee , T9M (10/23/09-02/03/10) What a blessing you have every daying waking to your sweet son saying your name! I know your are so proud of the accomplishments that he has made!!!

    • elle9132 says:

      Jessica – I know your time with Kaylee was so special, and I’m so sorry for your loss.
      Ben is truly and amazing young man. He’s exceeded every expectation and at almost 22 is still learning.
      Thanks so much for reading.

  2. Roz Roberts says:

    We also have a Ben: going to be 3 years old at the end of the month. I am Grandma. My daughter will be thrilled to know of your Ben’s progress – thanks for sharing

  3. Lauren Allen says:

    This is very uplifting to read, I have a 3 year old with Trisomy 9 Mosaic and I know we have faced obstacles already but really are just starting out on our journey. It is encouraging to know your son is doing so well, keep writing!!!

    • elle9132 says:

      Take it one day at a time and cherish every day. You’ll be returned much more than you give. Thanks for reading.

  4. Jill King says:

    Ellen, reading about your morning ritual with Ben brought tears to my eyes. This is wonderful that you are writing this blog. Thank you so much for sharing! I wish we lived closer so we could have shared in your experiences with Ben, and all your children! xoxo Jill

    • elle9132 says:

      Thanks for the comments Jill. And Thanks for reading. It would be nice if our kids were able to spend more time together.

  5. Patty Magnon says:

    Reading about your morning ritual with Ben also brought tears to my eyes. God gives these children to very special parents. Ben is blessed in having you and Dennis in his life, just as having him has blessed you. Every time I have seen Ben he has been a sweetheart. I know you are so proud of all his accomplishments. I wish we had lived closer and could have visited more often. Keep writing!

    • elle9132 says:

      Thanks so much Patty. I’m so glad you found me. Ben did profoundly change our lives….and all for the better. I too wish you could know him better. He’s a great guy!

  6. Jami McKnight says:

    Wow this is pretty amazing Aunt Ellen – you probably know better than anyone how valuable a blog like yours would have been when Ben was born. Growing up in my child mind you and Uncle Dennis did an amazing job of making Ben’s life seem “normal” and easy. Obviously as I’ve gotten older and reading this especially I have come to fully understand the effort, dedication and immense strength it took from both you and Uncle Dennis to achieve that perception/reality for Ben. Ben has always been more than easy to love and deserves no less but it should be said that I think he is equally lucky to have you guys as well. This blog and Ben’s story will probably provide more comfort to people in similar situations navigating the same path than you could ever know. Good luck with the book, I will definitely be reading! Miss you guys and much love, Jami

    • elle9132 says:

      Thanks Jami
      Your words mean a lot. You’re right, something like this would have helped a lot 20 years ago. That’s why I’m doing it. A little out of my comfort zone. We missed you so much last week. Hope to see you soon.

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