“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Saturday, July 16, 2011

Daddy Guest Post

Hello All!

I'm John Ehle, husband of Heidi and proud father of Liddy. I'm sitting here in Riley Hospital's ICU watching my two favorite girls get a little well deserved rest. Today was a little hectic to say the least, but I think Liddy made a great deal of progress.

I originally set up My Liddy Bug as a way for Heidi to vent, journal and network with others that have been through some of the same experiences. Another added bonus is the readership gained through soon-to-be parents of a special child with Downs. A lot of comfort and reassurance can be gained just by reading about the journey of another person, or persons. I'm extremely proud of my wife. She religiously posts her thoughts and feelings on whatever comes our way--the good and bad. Despite any setbacks, Heidi presses through like a champ. She's much stronger than she ever gives herself credit for (she'll credit it to heredity or God, but there is something to be said about the fruits that blossom from hard times and adversity IMHO).

Me? I find an odd sense of comfort in logic, facts, statistics, etc. I find it easier to be a pessimist, lest I be disappointed.

When we found out that there was a possibility our little girl had Down Syndrome, I was pretty much resigned to the fact that she did before we knew for sure. I lost total faith in a God, or at least a God that concerned him/herself with the affairs of his/her creations.

I was angry....No, I was pissed and ready to kick God's ass if given the opportunity! Not because I felt that him/her did something to me, but because I felt he/she cheated my little princess out of a good shot at life... A shot at life that I and many others take for granted on a daily basis. The anger turned to tears and heartache, followed by the "is what it is" disposition. Sometimes it felt like the emotions ran together.

I decided to look up as much information as possible on DS. I needed to intellectually and mentally prepare for what was going to become reality. I found the information available on the National Down Syndrome Congress Center website to be especially helpful. I highly recommend downloading and reading through all the material available.

Aside from getting hardcore data on the subject matter, I needed to actually get a feel for individuals with Down Syndrome. What are they like? What are their limitations? (I didn't feel watching old reruns of Life Goes On would satisfy my thirst for understanding).

YouTube, of course, has hundreds upon hundreds of video dedications and miscellaneous clips featuring kids with DS....acting curiously like kids. I stumbled upon one particular short school documentary about a 13-year old girl named Addison.

Watching Addison was a fresh breath of air to me. Her mannerisms line up with any other outspoken, ornery and down to earth teenage girl. Although no one can ever really predict the abilities or hurdles an individual with Downs will have, one thing for sure is they have an extra amount of kindness, love and positiveness that seems to bring us all together.

I fell in love with Liddy immediately. At first, I wasn't too keen about having a girl. I mean, I get boys. I know my son better than he knows himself. A girl? I've been trying to figure out girls for most of my life! How could I ever relate?

That thought process subsided pretty quickly after she arrived.

I usually work through the night and I try to be the first one to pick Liddy up from her bassinet in the morning- just to see her bright beautiful smile when she wakes up. She has the uncanny ability to make this conservative introvert  sing, dance and generally make a fool out of himself just to get a glimpse of her giggle and smile.

It's going on day two of her recovery from heart surgery and I can't wait to see that smile again. I can only speculate what the future will bring for all of us, but I know now that Liddy has a spark about her that lights up everything and everyone she touches. She hasn't been "cheated" as I once feared. Quite the contrary; we as a society have cheated ourselves by not embracing the more desirable facets of humanity people like Liddy, Addison and countless others with Down Syndrome exemplify.  

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  1. Just wishing Liddy a speedy recovery. Sending you lots of good wishes to your family and many blessings for Liddy. She is a beautiful strong soul and I am sure it won't be long before she is smiling again. best wishes and prayers from Australia. Lors

  2. Thank you for sharing your story. I read somewhere that God has hidden his angels in our people with special needs. I have no doubt your little girl is one of them and you will know a very special love with your little Liddy. She is also very lucky to have such wonderful parents. You have a bright future and I wish you all the very best.

  3. This is lovely, thank you for sharing it :)

  4. I love hearing how Dads felt in the beginning, thank you for sharing your feelings, this was very beautiful to read. And I loved the video! I had never seen it before, it actually brought me a lot of comfort and made me smile.

  5. Jenny, I love Addi too!!!! :) She always makes me smile, and I am 100% positive that that will be my Liddy several years in the future! :)

  6. I know that I'm a little late on commenting on this post, but when I read it, I knew I had to make a comment!

    My sister has Down Syndrome, and she will be 40 next month. When I was younger I felt like she ha a handicap, but once I got older, I realized that people with Down's are the only perfect people in the world. They don't judge others, and their hearts are filled to the brim with love. I've never met anyone as beautiful, or as loving as my sister. She lives a rather normal life. She went to a regular school, she graduated, and she now has a job that she loves. I know that there are some people who stare and talk about her, but it never seems to bother her. She constantly has a smile on her face and my life is so much better with her in it.

    Your daughter is so very special. She will change your life in ways you didn't know were possible. I am so happy to hear that she is doing better, and I'm glad to hear that you are no longer discouraged about having a daughter with DS. In my opinion, y'all have been given a very special gift from God, and I'm glad that y'all see it that way as well! My thoughts and prayers are with y'all, and I can't wait to get a new update on Liddy!


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