A perfect baby

It's a cold winter night in January. The day is done and the kids are asleep. A man sits in bed with his computer, his beautiful wife next to him quietly catching up on some texts and relaxing after a typical non-typical day in their lives. The youngest of four daughters dozes peacefully in the crib next to their bed, hopefully down for the night. This young one, almost two years old, has no equipment attached to her, no monitor to assure her parents that she is indeed still breathing, no vent to breathe for her, no oxygen to make sure her breaths get her the much needed saturation her blood and body demand second after second after second. This baby is perfect. The man loves his life.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” -John 16:33

I may be echoing some sentiments that I've already stated here before but it is too important to not reiterate: whatever stuff you're in the middle of right now, God is so much bigger. God knows and so do I that sometimes we just want an easy way out of the crap we find ourselves experiencing in this life. My prayer has so often been "please God, deliver me out of this. Heal Brinley, give her a new tongue." At the same time I can't help but feel so thankful at how far we've come, not delivered from the fire but through it. Life is not an easy thing to live. I have yet to meet anyone that has had a perfect life. If you know such a person, then you don't really know them.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. -Philippians 4:4-7

It's been so long since I've written a blog post that I wanted to share some of these things that are in my heart, things that God is speaking with each passing, crazy week. Sarah and I are so incredibly blessed with four incredible daughters, friends and family that are imperfect right along with us, a schedule that is more insane than you might care to believe and a God that knows exactly how much we can handle and when we just need a rest! We have been having so much fun living life with all of you, sharing joys, mourning losses and reveling in the little victories that each day brings. The God that we love continues to amaze us as we let him be in the driver's seat.
Here is a great quote from an amazing woman of God that hopefully, all of you have heard of:

“This is what the past is for! Every experience God gives us, every person He puts in our lives is the perfect preparation for the future that only He can see.” 
― Corrie ten Boom, The Hiding Place

This distills so much of what God has been working into our lives over the last couple years into something so understandable.

Now that I've gotten part of my brain on the page I can give you some of the latest on Brinley and co:

• Today we had our first appointment with ENT and plastics since last February. Dr. M, our ENT gave Brin a great report. We have the OK from him to do some food tasting and small feeding amounts (very small). The best quote from him was that soon her trach is basically going to be costume jewelry (meaning she's doing almost all her breathing using her own airway and the trach is really just a backup). The next step from there is to possibly do a new swallow study. The next step after that would be decanulation (trach removal)!
• Plastics was very pleased with how well her feet have been healing. There may be some adjustments that need to be made but that wouldn't be until at least school age.
• We have a date scheduled for her cleft palette surgery. March 29th. The procedure is about 3 hours with an hour or so before and after for pre and post op. Recovery is typically a 3-5 day stay in the hospital. This surgery will hopefully be a great step forward for a lot of development including speech and swallowing and lots of secondary things you might not expect to be connected but are.
• Big prayer request is not just for the surgery itself and the recovery but also that we can ween Brinley off her pacifier because she will not be able to have it for 4-6 weeks after surgery and it is currently the only way she is soothed to sleep. It could get rough and we don't want her to have to endure surgery and not having her binky at the same time so we will begin the weening now.
• We have a new nurse on the team, nurse A, that we are in the process of orienting/training. She's already in love with Brin and she seems to be a great fit so far with our crazy little family.

That's all for now. There's always more to tell but it's easier if you just come visit, so stop on over! Just one picture this time.