Saturday, June 14, 2014
A day of 'firsts"
Jude had his first clinic appointment with Cleft Lip/Palate team last week Friday.
This is where he sees about five specialists and then they determine the best course of action for him.
The appointment went fine. He was a trooper. The doctors, nurses, social worker, and speech pathologist were all wonderful.
The surgeon feels it is best to repair his palate first, then his lip. I wasn't expecting that recommendation. Repairing the palate first will give Jude the ability to talk. As of now, he really can't form any words. His surgeon doesn't want Jude to fall behind any further than he already has concerning his speech. We are planning for surgery this month. Then in about three months he will be re-evaluated by the speech pathologist. And she will determine if our next course of action.
Jude is trying to talk. He really is. I see that he is beginning to get frustrated when we don't understand him. We have started to learn sign language at our house. It is really fun, and Jude is responding well to it. But man, if he can actually begin to talk after his palate repair that would be wonderful!
Our clinic appointment wrapped up around noon.
It is about a two hour drive to get home.
Shea and Avery were so good and patient during Jude's morning of appointments so we thought we would take the kids to the area's local FREE zoo.
Another first for Jude.
The afternoon was perfect.
Good moods all the way around.
The zoo was very nice. It's small, but has a lot of the animals that kids (and adults) love to see.
Then IT happened.
The one thing I knew would eventually happen....
The one thing that I dreaded.
The one thing that I wasn't sure I could handle well or properly or with grace....
While we were exiting the Primate house....
A boy who was about 9 years old.....
Made a horrifying face....
At my sweet Jude.
My heart stopped.
It was so crowed.
It happened so quickly.
The girls saw what this boy was doing.
I had to say something.
I asked the boy to stop pointing.
I told him that my baby simply had a cleft lip.
And please stop making that face.
And swoosh, we were out of that Primate House.
The boy's face lingered in my mind.....
My husband was waiting for us on a bench.
I told him what happened and what I said.
I know the boy probably has never seen an un-repaired cleft lip before....but THAT.FACE.HE.MADE.????
Time to go home.
Then IT happened AGAIN.
As we were walking to our car, we passed a group of school kiddos who seemed to be either kindergarteners or first graders.
One little boy came rushing up to the stroller....
He wanted to know if Jude got hurt.
Why was his lip like that?
What was wrong with his lip?
This boy was truly concerned.
My heart softened.....
I told the boy there was nothing wrong with Jude's lip.
I explained that Jude's lip was just different.
He will have surgery to repair his lip.
The boy still seemed confused and concerned.
The boy looked at his teacher and asked her why was Jude's lip different?
The teacher reiterated what I had just said with compassion and love.
She gently put her arm around the boy and told him that Jude is just fine.
The other teacher can right up to Jude and told him he was darling and "oh, so cute".
His teachers were angels!
We continued to walk to our car.
We were all processing what had just occurred.
My Shea, my sweet out spoken matter of fact ain't no body gonna say anything about my baby brother, daughter was so ANGRY!!!
She said with her arms folded across her chest:
Why can't people think before they speak??
This is ridiculous!
She too is cleft affected.
Her lip was repaired while she was in China, but she has had quite a few surgeries to repair her palate and has quite a few surgeries coming up.
When she was younger, kids had asked her why her lip looks different.
She boldly told them why.
However, she is older now.
She is very self-conscious of her lip and nose.
She just wants to blend in and not talk about her 'different' lip and nose.
All three kids fell asleep in the car as we traveled home.
Dave and I talked about what happened.
It does hurt.
I just want to protect my kids.
Jude doesn't have a clue.
Shea and Avery do.
God in His wisdom is teaching us so much through Jude.
Jude is precious.
He is simply perfect.
He is God's amazing child.
He is sweet and gently and happy.
We are all learning FIRST HAND that what God has created IS majestic, wonderful, and perfect.
That appearances are not what makes us who we are.
It is HOW we are....
It is HOW we live our lives.
It is our HEARTS and LOVE for others that define us.
Our family can see beyond Jude's lip.
He is so much more than that little lip.
He is already teaching us so much.
And isn't it interesting that our surgeon will be repairing his palate first?
Here we thought it was going to be his lip.
We wanted his lip to be repaired ASAP.
We thought that would be best for him.
Funny how things work out......
at 7:48 AM