The Healing

First, Maggie is doing well. She is sleeping, eating and gaining weight (1lb in two weeks). She loves to have her hair washed. Her siblings adore her. She receives tons of kisses and nuzzles and many declarations of “You are so cute!”and “I will always take care of you!” She is a champ when I have to clear out her tiny nasal passages, which happens at least 4 times a day. This is really the only complication of Apert Syndrome that we are dealing with day in and day out but that will change.

This last weekend I spent my time researching doctors who are familiar with treating Apert. It is in one word, “exhausting”. Who is the best? Who has experience with Apert Syndrome? What are they good at, craniofacial work or working with hands and feet?Who is close? What will it be like for the other kids if we are traveling? So many questions and so many unknowns, and you know what happens when I am exhausted, have a newborn and my baby has a huge unknown before them? I get angry…specifically at God.

I’m not going to lie, I have the most honest and vulnerable prayer when I am angry and I hear God the most when I am at this point. I went to our parish’s 24 hour adoration chapel, grabbed a Bible and sat down with my prayer journal. It didn’t take me long to pour out these words onto my journal page, “WHY DON’T YOU JUST HEAL HER?! You can do it, I know you can.” I said these things before the Lord in our adoration chapel and I waited. I cried and I waited. I have done this before, I did this after our second miscarriage and here I was back pleading for another child. He spoke then, and I knew he would hear me now.

“Who are we going to go see, what doctor? How will we find the right one? This is so confusing, so much to do. How will we know who is right?” I sat and listened and I heard the Lord urge me to seek wisdom; to seek what is right, to watch my foot path and stay close to Him. I started to flip to the Gospels in the back of a Bible, and paused so I could write some thoughts in my prayer journal. I closed my journal and glanced back at the Bible. On my way to the Gospels I had landed on Sirach 38 where someone had highlighted a whole paragraph:

“9 My son, when you are sick do not be negligent,
but pray to the Lord, and he will heal you.
10 Give up your faults and direct your hands aright,
and cleanse your heart from all sin.
11 Offer a sweet-smelling sacrifice, and a memorial portion of fine flour,
and pour oil on your offering, as much as you can afford.
12 And give the physician his place, for the Lord created him;
let him not leave you, for there is need of him.
13 There is a time when success lies in the hands of physicians,
14 for they too will pray to the Lord
that he should grant them success in diagnosis
and in healing, for the sake of preserving life.”

No such thing as coincidences. Okay Lord. Okay. We will ask for you to heal her and I’m going to trust that you will lead us to the right doctor.

Please pray with us for these things.

Lastly, I want to share a beautiful moment from today.

I found a wonderful support group for people with Apert and their families. It’s such a blessing to see kids who look similar to your kid and see them thriving. Today I posted a picture of Maggie and introduced her to the group. Soon after a mother sent me a message and a picture. The picture was of her beautiful son who had been stillborn with Apert. He had dark hair sweetly swirled on his head, and beautiful olive skin like his mother. She told me that when she saw the picture of Maggie, she felt that she was finally given the gift of seeing what her son would have looked like had he opened his eyes. Already, Maggie’s face, her life, her presence is giving healing to the world.