Verklempt. It is such a good word. It means: overwhelmed, flustered, nervous; excited, overjoyed, happy. It is that full feeling in your chest that is so expansive it presses on your tear ducts and catches in your throat so that you have to breathe deep and sigh. Verklempt is full on Joy, to the point of release.
I have been feeling this feeling a lot lately. I am so overwhelmed by the progress that ‘Buddy’ is making. I am so overwhelmed by the experiences I never thought I would get to share with him, that we are now sharing. We are going to walk to the local tree lot and get a Christmas tree tonight. Just thinking about it gets me teary, the smell of the pine, the cool crisp night, the reindeer in the corral that he will actually see! Holding my husband’s hand and walking through the cold night to pick out just the right tree, ‘Buddy’ sitting forward in his stroller reaching out to touch and probably taste the trees. A year ago, he was unable to sit forward in his stroller. I just think about snow and I get short of breath thinking about the look on his face when he sees it, and ‘gets it’ for the first time.
It is a feeling all parents get, the wonder of seeing the world through a child’s eyes. It is beautiful, magical and life affirming…and we haven’t gotten it for three and a half years, well not much. So to get it not just in normal doses, but accelerated doses after that kind of wait, well, it is overwhelming, and it leaves me…verklempt.
It is a good feeling.
So, the whole idea of the Ketogenic diet is to gain seizure control and eventually get med free.
When we first started the diet, and it was working, we weaned ‘Buddy’ off Phenobarbitol, and Zonisamide, two very nasty but necessary seizure meds. They saved his life, but left him wiped out. The ideal way to wean meds on the diet is for the child to grow out of them. As the child gains weigh the dose to weight ratio shifts until the med level is no longer medicinal. If the diet is working you are golden, if not, you get break through seizures. It is a process rife with hope and fear.
When ‘Buddy’ was weaning from phenol, we were still pretty overwhelmed. I had never looked at the side effects of the meds, because I knew I didn’t have any choice, so why burden myself with extra worries. Because of this, we didn’t realize until after the fact that a side effect of withdrawal from Pheno is insomnia. For 6 months ‘Buddy’ went to sleep at 7 or 8, slept for 4 hours, woke for 3 hours, slept for 3 more and did not nap. A total of 7 hours sleep for a 6 month old baby. I honestly don’t know how we survived. We did swap nights and wear earplugs on off nights but still, it was tough.
Sleep is still tough. We had a glorious stretch of near normal sleep patterns, but not currently. I am writing this at 5am having been up since 2am. This has been the pattern for the last 2 weeks. On a good night I can get him back to sleep in two hours. On a bad night, he is up for the day at 3 or 4 am. I don’t know for sure, but I think we are in withdrawal again. We have not raised med doses (Banzel and Lamictal) in over a year and a half. I am about to take ‘Buddy’ on a trip out of town to visit family, and he is not sleeping well. The shadowy monster in the corner is the threat of seizure. There is not really anything I can do that we don’t already do; keep rescue meds handy, keep a close eye on him. Don’t leave him with anyone who can’t handle a rescue. All I can say is I REALLY hope it doesn’t happen for so many reasons.
Like I said earlier, it is a process rife with hope and fear. Fear of regression in development. Fear for his health, every seizure carries risks of brain damage since they are so long. Fear of social impact, seizures are scary, many people protect themselves by creating distance. And the biggest fear which shall remain unnamed. But it is also a process of hope. ‘Buddy’ is working hard at pressing into his legs to stand. He has recently figured out how to wave hello and goodbye. He is noticing cars, trucks and trains. He is able to push the icon on the phone to activate his favorite video. He is more alert and interactive every day.
If he is able to stay seizure free on the diet without meds, then we are one step closer to being one of the lucky ones. We pray for that every day in a million different ways.
I am always searching for answers. Sometimes I don’t like the answers I get. Like the time someone told me my child might have cerebral palsy. Turned out he does. I took a step back, absorbed the answer, then began asking more questions. That was how I found out that Cerebral palsy is a far broader diagnosis than the kids you see on the telethon. Basically, any physical impairment cause by brain injury, is cerebral palsy. That means anything from a slight limp, to wheel chair bound and unable to speak. It can affect cognition, or not.
Oh, well I knew that already, just not the name. I find it so interesting the emotional roller coaster that comes along with new terms. No wonder Doctors shy away from using them. My heart races, my head spins, my breathing feels thin, my ears ring. Once I calm down and think it through there is always a simple way to manage the new information.
Lately, I am looking into Brain Plasticity. This one does not have the same effect. I am not afraid as I read, I am excited. The latest science on the brains ability to reroute and repair is a lighthouse in a dark storm.
‘Buddy’ has had so many seizures, and so many of them have been close to a half an hour. His oxygen levels have dropped so many times. I do not need a brain scan to know there was damage. Nor do I need one to know he is working past that damage. Still it is very nice to read stories of scientists who are proving what I instinctually know is happening. I recently read The Brain That Changes Itself by Norman Doidge M.D.. In it he walks through a bunch of different scientists’ research and processes as they prove the brain is not machine like as was once thought, but plastic and changing from birth to death.
There are so many amazing stories of recovery. It really is a must read. Stroke victims who gain full recovery, learning disabled children taught to learn, a woman born with a brain injury, Barbara Arrowsmith Young, who self-diagnosed and repaired the damage and now runs a school in Canada! I took notes all through the margins. I stayed up late reading and researching scientists on the internet. Finding out everything I could about where they were and was ‘Buddy’ a candidate for their program. To that end I found out about a conference in Reinbeck, NY at the Omega Institute called Limitless Mind. It felt crazy, but I knew I had to go. Three of the speakers were mentioned in The Brain That Changes Itself Ms. Young being one of them. I knew I needed to talk to her.
I go this week. I don’t know what I will find. I know what I hope I will find. I hope I will find a way to chat with these speakers about ‘Buddy’. I hope that I will learn things from them that I can use daily to help him repair the damage that has been done. I hope that I can carry some of his charm with me and make connections for him, with people who will help him. I want to understand how one heals an injured brain. I want to do everything in my power to help ‘Buddy’ heal.
Sometimes things just fall into place. When you are used to fighting for every little scrap, it can take you by surprise.
Last Tuesday ‘Buddy’s’ new physical therapist (PT) put him in a Johnny Jumper to help him work his legs and have a little fun bouncing. He loved it. This led to a conversation the same day with his occupational therapist (OT) about trying a walker/gait trainer. I brought it up with his PT on Friday. He said sure, looked around the room and said “What about this one here?”
I was a little stunned. Could it be so easy? No jumping through hoops? No calls to suppliers, or insurance companies? Yes, it could. Tuesday, one week after the first thought was voiced, ‘Buddy’ was fitted into his gait trainer. But it didn’t stop there. He did not fuss. He moved his feet. It wasn’t perfect, but you could see the pieces were there. We made it from the classroom to the therapy room and back again. He was in it for just under an hour, and when he came out, he slept…hard.
My heart raced. My heart continues to race. ‘Buddy’ is three, and 35lbs. The thought of him walking has been my hope, a dream, but I was cautious about it. I was preparing myself in case it did not happen. I still caution myself that our successes are fragile. At the same time, they are successes. ‘Buddy’ is doing great! He is such a fighter. No matter what is thrown his way he just keeps moving forward. He is such an inspiration.
I am a believer in miracles. I have to be. But the miracles I believe in are the ones that we make happen. Through force of belief and efforts to push boundaries we can make the impossible, possible. We did it, bringing ‘Buddy’ into our live. ‘Buddy’ has done it by staying in our lives, and he continues to do it with each new milestone. But what an incredible blessing when pieces of those miracles fall in your lap.
Two years ago, the goal was life. Last year, the goal was to be able to sit on his own. Today, walking! It takes my breath away. What a gift to have people in our lives that see his potential and are so excited to help him reach it. What a gift to have a son who is so strong, determined and happy. I have not always felt lucky on this journey, but I do today. I feel very blessed. All because someone else saw my son and reached out to help make his way a little easier.