Coffee in hand and the rain outside, Logan sleeping in and sweet Kim keeping an eye on him....I'm ready to write.
But how? How in the world will I find the words.
We really should have created an event and face-timed everyone. I'll put that on the list for next time.
But even then I'm not sure it would have all been as powerful as it was for us.
They worked in the form of tears from neurologists (who knew?), giggles we haven't heard in so long and a renewed bond between a wonderfully supportive husband and father and his extremely appreciative wife.
To be fair though, we didn't cure epilepsy this weekend. We didn't find the root cause of Polymicrogyria and there is no race for the cure for epilepsy scheduled....yet.
But it was good and powerful and precious and encouraging.
After a great ride up, complete with giggles and smiles from LJ watching his new Elmo DVD, we enjoyed a sweet evening of dinner and more giggles. Logan was so happy and content. And even with all that is required to keep him on schedule, we had a beautifully relaxing evening. We even left room for a salted caramel cheesecake dessert!
In the process of getting everyone ready for bed in our adjoining rooms that night, we might have inadvertently locked our 3 1/2 year old, special needs son in his room without any way to get in.
Apparently we needed a little gut check in all this relaxation and enjoyment.
Luckily, there IS in fact a tool that can be used by engineering when they are called by security to be able to get past the night lock on the hotel room door.
Whew.
And luckily the staff was swift, calm and quiet throughout the entire process. Which is more than I can say for the couple who needed to know the details of why I was in a robe in the hallway trying to get into a locked room, all as they staggered to their hotel room door.
Wow.
After that little episode (and putting a shoe in the way of the door adjoining the rooms) we proceeded to get our little one to sleep. Since he had been up all day, we anticipated the possibility of a bad seizure, but sometimes it's worth that possibility to see him so happy.
Sure enough around 1am it started. My sweet husband was sleeping with Logan and shared with me the next morning that he was glad it wasn't a true emergency....I guess I'm what you might call a heavy sleeper.
We gave the Diastat and as the seizure began to wind down, hoped for the next morning to bring something other than the usual period of recovery from the medication.
The next day felt extremely full before it even began.
That morning consisted of making Logan's formula in the bathroom, giving him everything by tube as he still slept, YUMMY room service breakfast and getting Logan's "stuff" (meds, water and food) ready for the day. Our part of the meeting wasn't until about noon, but as I walked in circles feeling not so sure about how everything would go as the day unfolded Logan's doctor called and asked to meet with us before his presentation.
So, at 11am with no makeup and my hair half done, Fred barely out of the shower and Logan awake and unhappy....we welcomed Dr. Bailey into our hotel room.
At that point God reminded me that I was not in control. This was not about me and not completely about Logan and our family. But we were there for, what feels like, a much bigger purpose.
And he also reminded me that Diastat and unexpected disruptions are simply part of life with epilepsy.
We finished our meeting with Dr. Bailey and I planned to be downstairs within the next 15 minutes to attend the presentation by an expert in polymicrogyria.
Without having time to get anything together for the boys, I headed downstairs (hair and makeup complete) and steadied my nerves as I entered the room.
Neurologists are real people. They have families and lives, hobbies and faults. But that's not really how you see them when you have a child who depends on their brilliance to make his life better.
So as I prayed you couldn't see or hear my nerves, I sat beside our sweet doctor and sipped on my glass of water wondering how this would all play out.
As the next couple of hours unfolded, it was God at work in his most glorious fashion (not that he works in any other fashion).
To my surprise, I actually understood...at least on some level...what the expert was talking about. Not that I will be putting MD after my name anytime soon, but it didn't all sound like Chinese to my simple, mama brain.
I checked in with Fred via text and he not only assured me things were fine with he and Logan, but he took the time to wish me luck and tell me how proud he was of me. That sounds pretty simple, but caring for Logan isn't ever really described as simple. Yet in the midst of all of that he thought to give me that sweet encouragement that I needed...from him.
Love, love him.
When Dr. Bailey began his presentation of Logan's case, while I sat on the front row poised for questions, I traveled back and forth between being present in the moment and stepping back trying to take it all in.
The words being spoken, the slides on the screen, the MRI images and the EEG information....it was all about Logan. It was his case, from the beginning through now, the one we have lived day in and day out, there for all of those brilliant brains to take in.
For whatever reason or whatever it says about me...it was surreal. I wasn't reliving it. I wasn't sad and I didn't feel like I thought I would feel.
I felt proud. I felt honored. I felt blessed. And I felt overwhelmed...in a good way.
Over the next hour we explored, in relative depth, Logan's case. His multi-volume medical history. And at the perfect time, Fred and Logan entered the room.
I was at the front of the room, with Dr. Bailey and Dr. Paciorkowski, answering questions. Me, the mom, answering questions...from doctors. About the brain and treatment for seizures.
Don't worry. I realize they were simple mom questions. They were questions only I could answer because of taking care of Logan and they were less medically complex, but still. It...was...so...cool.
We finished the presentation, I gave a brief speech and then it happened.
There were tears from some of the doctors. Real and heartfelt tears from seeing our beautiful baby boy.
We learned that although polymicrogyria is not altogether rare, Logan's MRI and where his polymicrogyria is located is fairly rare. To the extent that in a group of about 8000 polymicrogyria cases, there are only a handful like his. And while that may mean nothing for his treatment, it's validation that my gut has some merit.
Some of the physicians came over to talk to Logan, to tell us how precious and handsome he is and to thank us for reminding them that there is a little person behind all of that data and inside the details of every chart.
Our sweet Dr. Bailey wants to join the charge to turn the NFL purple the entire month of November. No application needed...you can join too.
We are joining a new research study with Dr. Paciorkowski in NY where we may learn more about Logan, but we will most definitely provide information to further epilepsy research to help families in the future.
We are scheduling a lumbar puncture (spinal tap) to test for various deficiencies and metabolites of neurotransmitters. **Be on the lookout for prayer requests for this one.
We have a plan for some new things for Logan that may or may not help, but it was information gained from this extraordinary weekend.
And...we did it. We went up there to be a face and a family and a journey in the world of epilepsy. Logan was precious and charming and exactly who he needed to be.
And Fred. Words will not do him justice this time. He's just priceless.
In the world of special needs, all too often one parent bails, in various degrees. Because it's hard, it's unforgiving and it's never ending.
This past weekend for us it looked like this:
I left the room around 11:40. Logan was sleeping and Fred had thrown on some clothes when he got out of the shower. When he rolled into the meeting room at 12:45 I had no idea that we had not been able to get a late checkout, he had to get himself and Logan dressed, get Logan fed and put together with all that has to accompany him, he had to pack every single thing, be out of the room by 12:30, pack it all in the car and still remember to keep out the things that we may or may not need for Logan. All while keeping an eye on the clock so he didn't miss the presentation and taking care of Logan on a day when Logan was feeling less than his best.
There was nothing easy about any of that, yet he did it all with a smile.
Love, love, love him.
It is so hard to really explain how all of this feels. It's like God is unfolding this part of our journey slowly and delicately, but in a way that feels so bright and hopeful it's hard to take in.
I can't begin to tell you either, what the love and support we have received means to us. We have such an amazing crew of people that are part of us, part of Logan and traveling with us wherever we go. We didn't necessarily have a choice about traveling this road, but you do. And yet you do it willingly, day in and day out.
There is a part of me that secretly wishes everyone had to endure something that seemed impossible. Something that seemed so unbelievable you couldn't imagine how you would ever get through it.
But then, you would know. You would know how much good there is in the world. You would BELIEVE in the grace and love and peace that God has to give. You would experience the compassion and encouragement and unending support that the human race is still capable of.
You would know, just as we do, what it means to be truly blessed.
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