Dear Shane Mark’s Wife

Do things ever fly out of your mouth that you have never actually thought about before? Sometimes things come out of my mouth that I didn’t even know I thought/was feeling. Usually they make me laugh or humble me at my sinful heart. When this happens I make myself spend some honest time in front of the Lord (usually in the form of writing) to kind of sort out where in the world that came from. This happened to me on Christmas Day. I was having a casual conversation about Shane and that this is a random genetic thing that happened. And I just randomly blurted out “Yeah there is a high percentage that he will have a baby himself with a cleft. So that is something his wife will have to deal with.”

It took my breath away. Literally I felt a tightness in my chest. I had to physically force myself to push the very thought of that away and decide to think about that later.

And I did. I had a big cry. I realized she, whoever she was, would have to go into making a family with my son knowing this is a possibility. And my heart just ached for her. So after some prayer for her sweet little heart this letter just flowed out of my heart.

Dear wife of Shane Mark,

You are in love. I totally agree. He is handsome and smart and so kind. I can see why you love him. I have loved him for years. He loves you so much and cannot wait to start a family with you. He is going to be such a good daddy. I just know it. I understand. You love that sweet little scar above his lip. It’s so special and makes him Shane. But I know as you start to look down this road of starting a family of your own you see that scar and may feel other emotions. I understand. The percentages say you have a 5% chance of having a baby with a cleft lip and or palate. That’s a very small chance I know. But its nerve wracking. It is scary. And your first pregnancy has enough fears and anxieties. But I want to tell you that is ok. It is ok to be unsure. It is ok to feel like this is not what you asked for when God brought you to him. You are starting a family. A family! And I could not be more thrilled. But I do recognize that with that choice comes worry. And I need you to know- you’ve got this. You and Shane are fully equipped for this. God equipped Michael and I for every step of the journey with Shane. For every terrifying sonogram. For every meeting with a surgeon. For the day we met that sweet wide smile. And for the day the lady made a face in Walmart. He equipped us and He will equip you. Your baby will be beautiful. Your baby will be loved. Your baby will be the exact child that God has for you. Nothing more. Nothing less. And if you have to walk down this road with your baby we are here. We are here for every step. Every tear. Every question. We are here. I am sure by the time you are reading this the advances in medicine and surgery will be unfathomable. They are already amazing. But I just wanted to take a moment mother to mother and tell you I get it. I understand the feelings. I understand the fears. And I thank you for being brave enough to create life with my son anyway.

-Caroline

Recovery

I wish I could follow up the surgery story with sunshine and rainbows. I wish I could tell you that the day following the surgery and the week that followed were a piece of cake. That this was as easy as pie and we ate cupcakes and had a family sing along.

I wish I could say that. I wish.

The recovery from surgery was flat out awful. Nothing fun. Nothing easy. Coming off anesthesia was rough. He was angry and confused and in pain. He had wires and IVs and monitors all over him. He had this plastic straw like thing coming out his nose. Stitches in his lip and mouth and tape covering all of it. He had arm restraints called no-nos (that should have a much stronger name to fully capture the torture like devices that they are.)

I remember the first time I saw him on the bed in the recovery room I was scared. Terrified actually. His face was swollen and he cried this moaning like cry that scared me. He smelled like iodine and blood and he was so miserable. The nurse had to hand him to me because I was too afraid to pick him up.

The first 24 hours were the worst. He was mad and hungry and tired. Couple that with not being able to relax enough to sleep, fighting against the arm restraints and trying to kick off monitors and IVs, and flat out rejecting the syringe thingy he had to eat out of and it was in a word: AWFUL. I think I cried 14 times. We also discovered our little corner room was the only one with just one chair to sleep in (the other had a couch and chair) and the cot we were promised never happened so poor Michael had to sleep on the tile floor. So lets just say minus the amazing chicken caesar wrap I had from the cafe downstairs, our stay at Children’s was not my favorite day.

But as hard as it was it was just that: one day. I know you have gotten to know me by now and have picked up on the fact that I am a bit of a drama queen whiner. And let me tell you the Lord heard lots of fits from me that day. But then just like that it was the next day. Baby resident (the toddler with a white coat who was “old enough to practicing medicine”) came by and checked on him. Dr. Smith came and saw him. And just like that the lady with the clip board came and kindly asked me for all my money. Sorry about college Shane, but your smile will be amazing. Anyways we blinked a few times and they were sending us home.

Home was a tiny bit smoother. Still not a fun filled adventure, but not as awful as the hospital. I mean Michael didn’t have to sleep on tile, but we were not out of the woods yet.

The next week was hard because of two things.File Jun 07, 9 13 54 AM

1. No-nos. Like I said, that is not a strong enough name. We had to watch him at all times because he would thrash and wiggle and try to get the arm immobilizers off. He was 3 months old and loved to suck on his hands. And he had this tube up his nose and he wanted to scratch/remove. He also did this adorable thing where he would rub his face on his arms to go to sleep. Well that was out.

 

 

File Jun 07, 9 13 25 AM

2. The dreaded syringe. This wasn’t a normal plastic medicine syringe. It had this long soft rubber hose coming out of it. This is how he had to eat and he hated it. He would cough and gag and spit. He totally rejected it and would cry out of frustration every time. We would have to sit there and put formula in his mouth and pray with each squirt (which might of held 5 mL) that he would swallow it. He fought this at every feeding the entire week. It took us 30-45 minutes to get him to eat every time. it was exhausting for all of us.

 

 

But just like that first day went on, the week went on. Our big kids were champs. I think we watched the Curious George 2 movie and George 3 around 684 times each that week. But they were so wonderful and helpful. I’ll remember that one day when they are teenagers.

And then in the midst of all this mess. The frustration and tears and anger God did it again. He showed up. He showed up big time. As if wrapping his arms around me in the waiting room was not enough. As if helping us get through the first day of recovery was not enough. If us qualifying for a grant from this amazing foundation that completely covered the surgeons fees in full wasn’t enough. He showed up and showed me again who He is. How He doesn’t just care for us and love us a little. That he doesn’t just provide for some of our needs. But that he provides for OUR EVERY NEED. EVERY SINGLE NEED.

You see through out all of this my mama heart was still grieving the
File Jun 07, 9 14 47 AM loss. The loss of that wide gap smile that was gone forever. And then it happened. 5 days after the surgery things were getting better. He was not as annoyed with the arm restraints and his swelling had gone down. The tape finally fell off and we could see a sweet pink line of healing. And then he smiled. He smiled a fully restored fully attached smile. And I lost it. My mama heart leaped and I remember just crying and saying over and over again “your smile. Its so beautiful. Its just so beautiful.” I thought it would take awhile. I figured it would be weeks before the stitches dissolved and we could see healing. But then day 5 we took him out of the bath tub and that clear tape fell off and there it was right in front of me. A Perfect lip. A perfect smile. Healing. Restored. Whole. It was unbelievable. But then again that is our God. Constantly amazing me and showing me His ways are not my ways. His plans are not my plans. His power is not my power. And my tiny little human brain cannot even fathom the things He can do. All of that shown so brightly in a 3 month old boy’s brand new smile.

“And my God will supply every need of your according to his riches in glory in Christ Jesus.” Philippians 4:19

“But truly God has listened; he has attended to the voice of my prayer.” Psalm 66:19