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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Surgery Update 4

The ventilator has been pulled. Lydia is breathing well on her own..although oxygen assisted right now. O2 sats are super (95-100)! She is still experiencing the heart block, which means she still has the external pacemaker. She is awake....although she is highly drugged up in an attempt to keep her pain free and calm. Neither of which seems to be the case. She is tossing and turning and thrashing around and has been for several hours now. Its a very hard thing to see your baby in pain and know that there is nothing you can do for her. :(
Hopefully tomorrow will be better........

A Heartfelt Thank You From Me to You

Dear Friends,

I know that I have already said thank you for your thought, prayers and comments several times. But I'm really not sure that I can ever thank you enough. Or explain to you what each and every page view, and comment (yes, I have read every single one...all 300+!) has meant to this family. 

Yesterday was one of the very hardest days of my life. Without a doubt. But every single time that I was able to log onto here, my heart was lifted. Yes, I cried. But with unbelievable joy and awe not fear. The love that was poured out for us, by you, people who don't even know us, was completely overwhelming. 

So to all of you who took time from your busy lives to come by, drop a line, say a prayer, and fall in love with my sweet baby, THANK YOU! 

Here are some pre-op pictures as your reward for blessing us!!! :)

From my heart to yours,

Heidi