A Mother's "Gut Feeling..."

I wish I could say that I feel we were nearing the "end" for all of Brooke's testing and doctor's appointments.

I don't feel that at all....

Since our appointment with the Geneticist I have had this lingering feeling of unrest and uncertainty. I know that our God is a god that grants us peace even in the most difficult struggles. He has given me peace in knowing that Brooke will have surgery, He has given me peace with her heart defect and the potential outcomes there. He has NOT given me peace about her diagnoses NOT being related and/or caused by something else! I have prayed for peace and I have listened for His whisper.... what I hear is a quiet voice- firm but hope-filled- "Keep pushing. Do not give up. I have prepared you to fight this fight. Push forward. My timing is perfect."

I always have known that the Lord would intertwine my formal training with my family life. I have fought alongside parents as they have sought the best education for their children who are exceptions to "the norm." I have tried to be a breath of fresh air to them as the long journey of swimming upstream has left them tired and, often times, hopeless. When I was in the public school system advocating and teaching these amazing kids I LOVED it! I thrived there! It was exciting.... and exhausting... mostly exhausting...

At the end of each day, I went home. Without those kids. I had respite when their parents had none.

I have found myself in those parents' shoes as of late. Don't get me wrong: Brooke is developmentally ahead of the game. She is downright smart and I have no doubt that she will be extremely successful in whatever the Lord leads her to.

But, my 'gut' AKA: the Holy Spirit is whispering to me as a mother, "Keep pushing. Don't let them miss it..." As the medical bills pile in and I hear the doctor say, "No, she is fine. You are overreacting..." I find myself unable to escape what I know my child needs. Just like those parents from my past... it never leaves my mind- or my presence! She is in my care almost 100% of the time and each time I look at her, I see not only an amazing creation that God has blessed me with as my daughter, but, I see the potential for what the unknown could bring... and the bills.... stinking bills!

We are pushing forward with the Geneticist to have Brooke tested for VCFS. Honestly, I don't even know how to spell it or what it all means! What I do know is that it is a chromosome 22 abnormality that  presents in individuals with palate, cardiac, and facial abnormalities. So, not full blown DiGeorge Syndrome, but, a more minor abnormality to some gene(s) that build chromosome 22.

I learned a lot today after talking to a parent whose daughter has this syndrome. A major concern: kids with this syndrome, when having their palates repaired, need a more specialized surgery due to artery displacement and the fact that they have low muscle tone to begin with... WHAT?!

This post could, quite honestly, turn into a book... so... I will cut it short.

Where we stand right now: Brooke WILL be evaluated for VCFS- we just need to find someone who will/can order the FISH test.  She will be informally evaluated by one of the leading physicians in the world on VCFS at the next support group meeting (June) and his wife- who specialized in speech/language therapy for kids with VCFS/DiGeorge!

In the meantime, as my new friend told me today, I am strapping on my Big-Girl Shoes and marching against the grain!

My kiddos!

Here is a quick update on Brooke:
Two weeks ago we saw the cleft palate team- holy cow! 12 doctors in 2 hours time... exhausting!
The consensus was that, although her cleft is extremely mild, that it needs repair.
We will see the surgeon May 3rd to discuss the surgery in detail. We will also schedule her surgery that day.

Last week we saw the Genetecist at DeVos. He is not at all suspicious that Brooke has anything abnormal going on from a genetic standpoint. The icing on the cake for him: her LACK of developmental delay! We are talking about a little girl who understands figures of speech, uses them herself, and is taking in more information each second than we can dish out!
He did schedule us to see him again in a year (which we may cancel), just in case her growth pattern does not continue- slow and steady!

In the midst of all of these appointments for Brooke, we celebrated Shane's first birthday!! I can't believe he is already one! Where on earth did the last year go?!! He had a great time at his birthday party. Shane is quite the opposite of his sister: he does NOT like cake or ice cream! Go figure!

I love watching Shane! He is learning so much right now- tonight he held up his new ball and said, "Basketball." (Of course, it didn't come out super clear, but, Rob and I both understood him!) He has the best demeanor ever and we just can't get enough of him! His kisses and hugs melt my heart!

It's crazy! I see so much of God's masculinity in Shane and so much of His beauty in Brooke! Absolutely amazing!!