I have this hope...

...that I will one day overhear a teenage Luke showing off his scars to his friends and recounting stories he has heard of the many surgeries and procedures he endured before he was ever really conscious of them. I have this hope that he and his older brother, Jack, will be rough-housing and he'll holler "Don't touch my face! Do you know how expensive this was to fix?" And his dad and I will smile to ourselves and consider how many years had passed since our sweet son was born and our lives were plunged into a world that was so very new to us.

I have this hope that we will find ourselves struggling with a strange paradox in which we are far enough removed from these circumstances that we almost forget them, but we also never want to ignore what we learned during this time. There are numerous reasons why I want to jump ahead in time and skip all this pain and struggle. But there are just as many reasons to really savor what is being wrought from John and I - as well as family and friends - as we walk through this time together.  I titled this blog "a work in progress" many many years ago, and it still holds true! Of course, we always pray that as we age we also grow.  And so we hope that time doesn't merely trek on without us truly reflecting on what we are meant to learn.

So much has happened in the last two weeks that it is difficult to recount it all. Luke has endured another major surgery, had many more exams reveal a handful of minor issues, experienced some wonderful milestones and captured our love and attention even more than we considered possible.

Not a day has passed that we have neglected to visit our son, and I am relieved that we have made such a commitment to be at his bedside. I am 'relieved' because I sleep better when I know we have loved him in the little ways we are able. Even just taking Jack up to the hospital and playing near Luke, I know he hears our voices and grows accustomed to our sounds. We honestly don't bother to be quiet, because I want him to be aware of our presence and patterns. Luke turns his head towards our voices when we speak and stirs when his big brother is too noisy. And this brings me such great joy. I have taken to pulling a chair up to his bed to read stories, sing songs, and talk to him. The music therapist assisted us in singing "Happy Birthday" to him two days ago when he celebrated his first month of life. Then she and I sang a few more family favorites. Jack would have enjoyed it if he was there.

Big brother was absent because Luke had major surgery the day before to correct the structural issue with his jaw that was keeping him from breathing sufficiently. For the next couple weeks, Luke will be under 'minimal touch precautions' as his jaw is being adjusted forward. He has two pins sticking out of his jaw, each about 2 inches long. Twice a day, a member of the craniofacial team uses a special wrench to turn the pins, which lengthens a metal bracket placed inside Luke's mandible. In the few short days since his surgery, he already looks remarkably different. As each change to his face means we are closer to allowing him to breathe on his own, I fall more in love with my little boy. It is a little difficult to explain in words, but my body literally aches all over as I am overwhelmed with love for my son and desire to hold him in my arms. He is more beautiful to me each day.

On Monday morning, Luke will go under anesthesia again for an airway evaluation to determine if his jaw is moved forward enough to remove his breathing tube. During this surgery, he will also have his G-tube placed in his gut (to directly receive nutrients until he is able to nurse on his own) as well as have a malrotation of his small intestine corrected. If all goes well, Luke will return to the NICU without any tubes in his throat. This means we will fully see his face for the first time since he was born. And he will be breathing on his own.

Each time I consider this thought, I am struck even more by the weightiness of it. Though Luke has been providing his own breath and receiving very little support from the ventilator, he is still breathing through the use of a machine. But the day is nearing when that will no longer be necessary. I am almost paralyzed with anticipation. If you see me in the next few days or weeks and I suddenly burst into tears, please do not be too surprised. I feel as if I have realized that all this time I have been holding my own breath, waiting for this coming day.

Since we first met Luke and encountered his mounting needs, we have been held afloat by previously fulfilled promises and the faith that God is already intimately aware of each moment of Luke's life. We had hope that any time with this boy would be meaningful and worthy of joy. On occasion, we had dreams of the distant future, even considering that our son with special needs may never leave our household. We have lived in a "wait and see" mentality, taking each setback and step forward as a small piece of this enormous puzzle. Yet somehow, this next piece holds more weight. It is as though this next milestone will blow the walls off this closed stage of our lives and expose the vast expanse of experiences to be had ahead. The hopes that we have considered for our son's future are practically an expected reality. The dreams are more real.

Directly ahead of us are at least two more weeks of post-operative recovery, oral training to learn to suckle, urology exams, endocrinology tests, cardiology follow-up, meeting with the geneticist, training on home care and any other number of tests that could lead to potential - though hopefully minor - procedures. But all I see is future.

FUTURE.

We consider a future that is months and years long, instead of days and weeks. And so we have hope.