Yesterday, Clayton had dental work done in the operating room--a routine procedure for him. Routine except that for the first time in ten years, Clayton had to see a dentist other than Dr. Koonce, who happens to be The Best Pediatric Dentist Ever. He is on medical leave, and we are missing his sweet spirit; and this momma was a bit anxious about dealing with a new doc. My fears were unfounded, as it turned out, because the new Dr. Dentist was very pleasant and great to work with.
Wednesday, October 09, 2013
I think I've mentioned before that it hasn't always been roses for Brian and me. We've had plenty of dark days in our marriage, but our commitment has kept us going. Our foundation of faith carried us through even when we felt like running far, far away. It has been with those dark days that our spiritual growth has occurred--kind of a "behind the scenes" growth that you don't even really know is happening. And after I got off the phone with Brian yesterday, I just couldn't help but praise the Lord in amazement. I had called him needing reassurance and prayer for something and I ended up getting one of the best spiritual pep talks ever! I didn't have to call my preacher. Didn't have to call a Christian mentor. Didn't have to call one of the "church ladies." I simply called my husband. My life partner. The one created especially for me by the Lord Himself.
This change didn't happen by accident. We have intentionally immersed ourselves in a family of believers who have continually uplifted and prayed for us. We've done the "Christian thing" even when the last thing we felt was "Christ-like." We have intentionally chosen to leave some things that we loved behind, simply because they weren't God-honoring or His will for our lives. Moreover, God is still pruning us as individuals and as a partnership.
We are by no means perfect. There is still A LOT of refining still to take place, but thank God He has brought us this far! I can't wait to see what the next ten years will bring in our relationship--we've come a long way and we're ready to travel even further.
Wednesday, September 25, 2013
Friday, September 20, 2013
One of the first things we do every single time Clayton checks into the hospital is tell every new attending doc, resident, med student, and nurse his medical history. Fortunately, I have most of this written down in a form that was put together for us by the Medical Home Clinic we attend. When I'm particularly tired of going over the details of the last ten years, I usually just hand over that set of papers for them to read themselves.
I understand that Clayton isn't the only patient at ACH. I understand that doctors and nurses can't remember everyone who comes across their path, along with the medical history of that child. But for the life of me, I DO NOT understand why they can't take even a small glimpse at his history in the chart before they visit us for the initial time. WHY is it all typed into the computer if no one ever takes the time to read it? My main issue comes when we show up on the floor and we are treated as if we've never been to the hospital before. HELLO? My son is in a wheelchair. Surely you can see that he has a history of medical issues? And even if you couldn't see that, you would know it with a simple glance at his past medical history, which is there for all to see when you pull up his name in the computer.
Instead we have things like this happen (after we've been in-patient for more than 12 hours): resident comes in and asks if he is eating and drinking as normal. READ THE CHART. Of course he is eating and drinking as normal, because he is tube fed and I am still feeding him as usual. :/
Has he had any seizures or episodes? READ THE CHART. I've told everyone we've spoken to that he doesn't normally have seizures that we can see, we are here to see if we are missing something while he is asleep. Of course we won't even know the answer to that now because the doc insisted on ordering that he be checked on each hour throughout the night, which meant that he DIDN'T sleep. Which pretty much cancels out any possible results we would have gotten from the EEG.
Nurse comes in (a nurse that has cared for Clayton many times in the past, mind you): I've got his medication. Oh, I guess I need a slip-tip for his g-tube . . . (staring at Clayton like a monkey staring at a math problem). Again, how is this news that he has a g-tube when you have cared for Clayton multiple times and you have the chart right in front of you??
I've discussed this issue with some of the doctors that we deal with the most, and they agree that for "frequent fliers" there are several breakdowns in communication. Almost all of the medical staff in the NICU and PICU go above and beyond in making parents feel "at home" as much as it can be possible. They are the best at recognizing the journey families with chronically ill children are on. But for some reason, that feeling does not exist on the floor. This was why the "Medical Home Clinic" was started in the first place, but that was over five years ago, and I haven't seen that much improvement in streamlined care for the frequent fliers.
I admit that my irritability level goes way up just being at the hospital, but it would be nice if some of the medical staff would go out of their way to read Clayton's history and recognize a family that has been down this road a bazillion times, and treat us as such.
Rant over. :/
Wednesday, August 28, 2013
When Shawn died, I knew that his soul was immediately in the presence of our God. I instinctively knew that his body had simply been an earthly vessel that was temporary to this life.
But that didn't stop me from loving that physical body . . . one of the three little bodies that is a unique combination of the love that Brian and I share.
Even in the beginning of my grief, I never made it a habit to visit the cemetery often. The intellectual part of my being couldn't rationalize spending much of any time at his graveside, and my faith still holds that he is with the Father.
But then there are those days. Those days when the momma in me needs to mother him. Needs to do something for him! Just as I do the small things for Clayton and Jackson, the mother in me craves to do those tasks for Shawn. But there are no tasks to be done.
No shirt collar to be turned down.
No mouth to be wiped.
No boo-boo to kiss.
No high-five to be given after a job well done.
No "I love you's" passed in conversation.
Simply put, he doesn't need me where he is at. He is with the Almighty Caretaker of the universe!
But his momma needs him. Needs to care for him in the physical ways that mommas do. I was so desperate in the early years. I literally pictured myself digging the grave up just so I could hold and touch him one last time. Just one last "let me make sure you're okay before I leave you on your own" moment.
I'm certainly past those desperate moments these days, but my idle hands still must do.
For eight years, my Grandmother faithfully renewed the flowers on Shawn's grave. I asked her in the very beginning to be my stand in because emotionally I simply couldn't handle the task. However, a couple of years ago I felt like I was finally ready to take on the job of keeping his flowers refreshed. I cried the whole time I was in Hobby Lobby buying the flowers. But once I was done, I felt a renewed sense of spirit. I polished his marker and cleaned up the neglected ones around it. And every few months, I repeat the same little routine. A time when I can reflect while I let my hands do a mother's work.
Saturday, August 10, 2013
Some people see miracles happen instantaneously. We've been lucky enough to watch a miracle slowly unfold daily before our very eyes. I distinctly remember at least three occasions when doctors sat us down for "the talk" about Clayton. "He's getting worse." "This is as bad as we've seen." "There's nothing else we can do for him." "You need to prepare yourself." We needed to prepare ourselves alright. Prepare ourselves for a life with an extraordinary little boy who is a daily witness to God's power in each of us.
For ten years, he has defied the odds and blossomed in spite of his condition and diagnoses.
And to that, I say "Praise God!," and a very Happy Birthday to Clayton!
But those who hope in the Lord
will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Friday, July 26, 2013
Jackson's had a rough week. It started last Thursday when he was in timeout and this BB like object "jumped from the carpet and into his ear." It was a miracle to say the least. A miracle that warranted a visit to the doctor to get it removed.
Then on Wednesday, after been told countless times to stop running in the house, he ran smack dab into the door facing (easy to do when you're wearing a hat over your eyes). Within minutes of the collision, he had a knot on his forehead that popped out at least an inch and a half.
And then to top it all off, that very same night, he got what I hope is his first and last motorcycle burn. I'm sure you're all of aware of that elusive muffler burn that happens so often when riding (I've got a scar myself to show my familiarity with it).