A Heart Update

I love this little photo of Ella taking care of a baby doll.  The doll is a resident of her pediatric cardiologist's office.  Ella recently had her 6 month post surgery checkup to see how her heart was doing.  We were delighted to learn that not only did things appear to be functioning perfectly, but if things continue to look like this, she may  not need surgery to fix her leaking valve.  It has either improved or is putting much less stress on her body, and at this point appears to no longer be an issue.  She is scheduled for an echocardiogram in September and after that she should only need 2 year follow-up visits.  This is HUGE!  We have spent so much time and money at the clinic, we are looking forward to a break on both fronts.  We would like to thank everyone who has prayed for Ella.  Your prayers have meant more than you will ever know!

As Long as They're Healthy ...

I've heard it a million times ... when parents-to-be are expecting their bundle of joy, they often say they don't care if it's a boy or a girl, "as long as it's healthy."  I've grown to hate that phrase.  "As long as they're healthy ..." Well, what if they're not? What if your child is born with an illness, a heart condition or yes, even a chromosome abnormality?  What if your perfect child isn't so "perfect" after all?

When Greg and I were waiting on our child from China, we were on the track for a healthy child -- and then one day we felt the overwhelming compulsion to switch to the Waiting Child track.  We didn't know it at the time, but the very week we switched, was the very week our daughter was being added to the waiting child program.  The impeccable timing led us right to her.  But she was not "perfect" ... she had a big hole in her heart and a whole lot of question marks.  And yet something (or somebody dare I say) told us that she was the one for us.

A few months before we switched to the waiting child program, we were discussing it with one of our relatives.  This relative was pretty adamant about only accepting a healthy "normal" child.  "We don't need any freaks in our family," he said.  Those words have haunted me from that day to this.  What kind of acceptance will my child have?  Will the fact that she has special needs cause  her to face rejection -- even from those she should  have the most unconditional love?

18q- deletion is such a rare condition and there is so little known about it.  Our geneticist has never seen it. Our doctor has never seen it.  There is really no clear answer to what we can expect.  We know her health issues are effected -- we have seen that.  But the delays and speech etc. is anybody's guess.  For today there are definitely challenges.  She is simply not developing like other children.  She is not speaking like them. She is far behind, and making very slow progress. I worry about her, and yes, sometimes I get frustrated.  And yet, she is our little girl ... and for some reason God wanted her to be with  us.  And so we trust and hope and pray that she will develop and that whatever her potential is that she will be viewed as a beautiful, happy, precious girl that is worthy of our love and unconditional acceptance.