I'm Counting My Blessings!

I realize that this blog is often a "downer!" Kael's disease is so serious, so hard, that I'm sure to many, it seems like there is no joy in this journey. So I decided that I would write a post about the many blessings that Kael's illness has brought into our family. This list is not complete - every time I sit down to think of another blessing, I find one. But this is a start....

Kael:

No temper tantrums – happiest kid in the world, when he feels ok. Even when he feels badly, he just cries and says, “Hold you, hold you!”

He loves to put himself in time out. It's the funniest thing – he'll go stand in the corner and wait for us to say, “ok, stay in time out.” Then he'll do this little squeal to let us know he's unhappy (but he's really not unhappy (he's often still smiling). Then he waits for us to say, are you ready to...(whatever it is he's supposed to do). Then he comes running to do what we asked.

He loves everyone – each new person that walks through our door is immediately grabbed by the hand and pulled up to the playroom. If someone walks through the room, (which often happens since we are under construction) he says, “Hi! Hi! Hi!” until they respond.

He has the most infectious smile and he smiles all the time. He gets excited about the funniest things. Our contractor was holding him (he's also a friend:), and Kael just thought his beard was the funniest thing in the world. He would scrub his hands through it and then laugh hysterically.

He thinks gum-popping is so fun – he'll ask you to do it again and again by saying, “Pop!”

When he's feeling badly, he comes over and leans his head in and says “Otay?” That is his sign for you to kiss his head (or other ailing body part) and say, “Are you ok?”

He plays this came with Michael: He waves his arms up and down and squeals. This is a sign for Michael to squat down, hold out his arms,and say, “Come see your Daddy!” Kael then says, “No!” and Michael rubs his eyes and pretends to cry. Then Michael says, “come see your Daddy!” again, and Kael comes running.

Ronin(our oldest son):

Ronin is, by nature, sweet and compassionate. But having a brother like Kael has made him even more that way. He is fiercely protective of him. When he broke his arm, he told me, “Mommy, if breaking my arm could mean that Kael would not be sick anymore, I'd break it all the time.” Of course, we told him that we never want him to be hurt so that Kael would be better, but we also told him that that was a very courageous and loving thing to say. Ronin has developed such a thoughtful prayer life because of Kael's sickness..not just praying for Kael, but for anyone suffering. We don't have the constant fighting that I see in other families – Ronin will get frustrated with Kael sometimes, but he gets over it very quickly – since it's hard to stay mad at someone who is always smiling.

Our spiritual life:

Besides our marriage, this is the area that has been most affected. I remember when I was pregnant with Kael, praying that God would help me to cling to him above all else – that I would stop being distracted by everything else. A friend of mine said, “That's a dangerous prayer – God may just give you what you ask for!” And he was right. It is a dangerous prayer – but God has answered my prayer with a resounding “Yes!” I can't imagine getting through this without my faith. When you watch your beautiful, perfect child suffer you begin to bargain. I have gone through this with God many times. “If you'll just heal Kael, you can take my arms, legs, mind...whatever! Just let him be whole!” I have raged at God, told him I hated him, begged him, pleaded...and yet, Kael continues to decline. I've had to ponder the purpose of this life and the meaning of endless suffering. I think in our culture, we see suffering as something that has to be stopped...right now! In Biblical times, people mistakenly had the idea that if a child was sick, the parents must have committed some sin. Jesus corrected their improper thinking by saying that the person was sick in order that God's will be accomplished. Today, people don't say that it is because of the parent's sin (although I actually have been told more than once that Kael was sick because of some generational sin in one of our families). Usually, people say, “You just need to pray more and pray more specifically.” I know they mean well. They are desperate to give me some control over the situation – that if I pray a certain way, or say a certain thing – that Kael will be healed. I can promise you, though, that any parent who has watched their child suffer as I have, would pray whatever prayer needed to be prayed, jump through any hoop, walk through any fire, to have their child healed.

What I have learned is that God already knows what He is doing...he doesn't need my permission to heal Kael or for me to say the right words before he says, “Bingo! Now I'm going to heal him!” That doesn't mean that he doesn't want me to petition him for my desires. It is clear from Scripture that we are to make our requests known to him. That is the easy part. The more difficult part is to say what Jesus said... “NOT MY WILL BUT THINE BE DONE.”

This has been the greatest spiritual lesson Kael's illness has taught me. To rest in the suffering...to be at peace with the pain. This does not mean that I don't cry out...to God and to everyone else...that this sucks...that it is the hardest thing I've ever had to endure. But, it means that once I've said how much I hate it...I can say, “Father, if this is Your will for my life, help me to embrace it joyfully!”

Michael's father was diagnosed with multiple myloma about two months before Kael's first seizure. During his dad's battle with cancer, Michael felt like he constantly had to chose between being there for his dad and taking care of Kael. Every time he would fly out to help his dad, Kael would have a status seizure, and Michael would have to fly home to be with Kael. It was a time of intense suffering for Michael. While Michael was at a Dravet family conference in 2009, his dad took a turn for the worse. Michael arrived just in time to see his dad, but sadly, his dad was not conscious and passed away a day after his arrival. Michael bought a journal to write down his thoughts...It has a wooden cover. On the cover, Michael burned in these words from Scripture: Job 13:15 "Though he slay me, I will hope in Him."

My marriage:

This has probably been the area most “blessed” by Kael's illness. I know it sounds crazy. I know everyone would think the opposite – and statistics would prove them right. But for us, preparation for Kael started 10 years before when Michael and I both made the decision to become Catholic. I was raised proudly Protestant. Michael was raised with no religion and had become a Christian in his early 20's. In graduate school, I began to debate with a Catholic friend about the Bible and faith. I was RAISED on the Bible. But a growing unrest in my 20's had left me searching for more. This friend challenged me, through Scripture, about some of my strongest doctrinal beliefs. And so began a year long study into Catholicism, Scripture and Early Church History. I did not take this decision lightly...I poured over books...and I prayed. But it was what God wanted. The week Michael and I started dating, I entered into the Catholic Church. After his own private study, Michael also became Catholic(after about 6months). At the time, we did not realize that God was giving a us a great gift – a gift that would help us years later in our journey with Kael. The Catholic understanding of suffering is so rich and full. It doesn't shy away from all of the layers one experiences when facing a lifetime of pain. So our faith has helped us to pull together and embrace this journey. We have learned to donate ourselves to each other fully and completely...that love means self-sacrifice..and that by sacrificing yourself for your spouse, you receive so much more in return. We are not perfect in this practice - by any means. But having to live this journey, together, with Kael, keeps us aware of our need for each other.

Watching your child suffer is something so personal and intimate – that it is hard for another person to get it, even if they have suffered themselves. But Michael and I have shared those times together...we have wept, WEPT, as we watched Kael go through his “screaming” seizures where he looks as if a demon or monster is torturing him. We have held on to him, together, as he lay there, in a drug induced coma...just barely hanging on.

Church is always a place where my emotions get the better of me. I often cry during communion, as I beg our Lord to heal my son. And Michael is there, to hold my hand...he is the only other person in the room who knows as intimately as I, what pain we go through. It is a bond like no other. In the beginning of our relationship, we were deeply, passionately in love. But now, through our joint suffering, our love is more tangible, more concrete...and believe it or not, more passionate – a passion rooted in deeply knowing the other person...and not running away.

So these are just a few of the blessings, but this post has made me think I need to keep a running list of blessings...so hopefully, this will not be the last of its kind!

The Gift of Suffering

I'm preparing for the birth of our 4^th child, Balin. I'm one of those “crazy” women who opts for natural childbirth – and my births are usually long and difficult. So I find myself turning inward and trying to prepare myself mentally, emotionally and physically for “Labor Day.” Tonight, I've been up most of the night thinking about what lies ahead. I've been lying in bed, not sleeping, and watching sweet Kael sleep soundly. We've had a blessed two nights of no seizures...and not only no seizures, but peaceful, solid sleep (at least for him!).

As I was watching him sleep and thinking about my impending childbirth, I began to think about suffering. More specifically, the gift of suffering.

James 1:1-4 says

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

It seems strange to think as suffering as a gift – to be told to consider it ALL joy. But I see it lived out every day in my son, Kael. This child suffers so much, on a daily basis. The constant seizures, the balance issues, the inability to control his temperature...and yet, he is FULL of joy. And not only that, but he brings joy to everyone. You cannot meet Kael and walk away frowning – he just makes you smile. He showers everyone with such love that they are immediately touched by him. And I would even take it further and say that because of his suffering and illness, the joy we experience is even sweeter. When those sweet moments come, we appreciate them more. The pain and suffering we as a family experience have caused our family to love each other more...to cling more tightly...and when we have our wits about us – to have MORE JOY.

We are taught in our culture to avoid pain at any cost...that any kind of suffering is bad. And yet, I see in my child just the opposite. As a Christian, I believe that God came down to earth, became man, and purposely chose to suffer and die to save me. He not only humbled himself to become a man – but he allowed himself to be put through torture. I know it sounds crazy to a lot of people – especially with our Western mindset that suffering is to be avoided at all costs – but this is part of the appeal for my decision to have a natural childbirth. When I go through labor, I can unite myself to Christ – to his suffering. I can actually have a little sense of what he went through. I have to continually give myself over – again and again – to the pain – and to Jesus. It makes what he did for me so much sweeter. During this time, I pray...hard. Not just that God helps me avoid the pain...but for others. I offer my pain up for those around me.

Kael's birth was probably one of the most spiritually intense moments of my life. We had decided that we wanted to pray the “Divine Mercy Chaplet” during my labor and his birth. This is a Catholic prayer which focuses on the suffering and death of Jesus. With each decade of the prayer, I focused on a different aspect of Christ's suffering and death. It was a 30+ hour labor and my first all natural one. After a long night and day of laboring, Michael, Ronin and I went into the bedroom alone. We turned off all of the lights and kind of wrapped ourselves around each other. We played a musical version of the Chaplet and sang along as a family. During this prayer, my water broke and the labor became even more intense. As I was praying and suffering, I offered my pain up for Kael – for his protection and that he would know and love God in an intense and amazing way. Then, later, as he was born into the water, this prayer was playing in the background. I had no idea at the time what suffering Kael or the rest of my family would face. But when things get really hard...when I am just clinging to survival...I remember his birth and how special it was. I remember that he was covered in prayer and that these sufferings are a gift.

There is another benefit to suffering...and this is one that brings me back to natural childbirth. It shows you what you are made of! All of my births have been difficult, but Thane's was particularly so. It lasted for 36 hours and I had to push for 4 hours. There were moments when I really thought I was going to die. I didn't think I could take another second of it – it seemed to be dragging out forever. I kept having this image pop into my head of me clawing to get out of a pit – but then I would remind myself to calm down...to just breathe...to just hold on. During those 4 hours, I was not really doing a lot of praying...that had come earlier. Now, I was just trying to survive – instinct took over and I was not really even thinking. And I did survive – and it changed me...I'm totally serious. I have not been the same since that birth.

My life with Kael is immensely difficult...I mean, it's almost laughable how hard it can be. And not just because of Kael – it's the illness, the seizures, the meds, but it's also the other kids...the normal trials...all of the difficulties that having little kids brings...PLUS Kael. Any mother of small children will tell you that life is hard...having Kael just takes it from hard to almost impossible. (if it seems like I hate life...remember my above comments – I'm just trying to paint a picture :). At least once a week, Michael or I (or both of us) exclaim something like, “Why does our life have to be so damn hard!!” But what Thane's birth taught me is that I can get through ANYTHING. I CAN SURVIVE. And not only that, but that joy will come! When Thane finally flipped out (seriously, the kid's head was so big his whole body just flipped right into the water in one push), the pain didn't matter anymore. I had this beautiful gift from God in my arms. The suffering was so worth it.

So when I'm having a particularly hard day, I go back to those two moments in time...to Kael's birth – because I know his life has purpose and meaning – that his first breath was a prayer and Thane's birth – because it taught me that I am a STRONG, STRONG woman who can survive anything.

I'm wondering what other lessons I need to learn – guess I'll find out in a few weeks...

Choices, Choices

Forgive me if this post rambles a bit - I am completely fried...no sleep, stressed to the max and just sick of the whole thing. Kael has had 9 seizures since Saturday afternoon...all during sleep. The seizures are bad enough, but the worst part is that they disrupt his sleep and make him miserable while he's awake. We spend our days riding in the car, clicking through show after show, trying to find one he will watch for more than 30 seconds, or attempting to coerce him into eating SOMETHING!

As I stated in my last post, we have been weaning Clobazam. Even at the highest dose, he was still having 15 seizures or so a month. We felt that the side effects were not worth it, since he was still having so many seizures. All of his seizures were under a minute long and self terminating. As we got lower and lower on Clobazam, we noticed his good days were better. He was happier, more alert, trying to talk more. Unfortunately, his bad days were worse. Now, even while he wasn't seizing, he was miserable. It was doable when his cycles were only lasting 2 days and were once a week. But now that he is completely off of Clobazam, he is having cycles that last 2-4 days, with only a 2 day break, and then the cycles begin again. His quality of life (and ours) has plummeted. We have tried giving him Lorazapam and Epistatus as emergency meds, but they don't break the cycle. So we're back on Clobazam, as much as we hate it. His normal dose is 5 mgs twice a day. We gave him a loading dose to sort of shock his system into stopping the cycle - (10mgs) but that didn't work, then we gave him another 5 mgs at midday and another 5 mgs at bedtime - but he is still having seizures. And now, the seizures are lasting a little longer (longest was 4 minutes) and stopping and starting. When they restart, they look a lot more like the seizures he used to have when he was in status. Thankfully though, they do still stop under 5 minutes. We gave him Epistatus for the one that lasted 4 minutes, but it stopped about 30 seconds after the dose, so we don't think it was the Epistatus that stopped the seizure.

We don't know if we will stay on the Clobazam - it seems to only work to a degree. We also don't know if the reason he was doing so badly is definitely because he didn't have the Clobazam, or because he was going through withdrawal after 3 years on Clobazam, or just coincidence. Like everything else with this disease, we always feel like feel like the whole thing is a crapshoot.

We will hopefully be meeting with our neuro on Wednesday to figure out the next step. But for now, we're just hoping to stop the cycle and get some sleep.

It's time for an update....

I have been meaning to update this blog for a long time - but even though I lie in bed, thinking of what I need to say - there never seems to be time to actually do it. This may be a very quick post - depends on how long I have before someone needs me!

Many of you know that Kael has had a very rough year. We have tried medication after medication, as well as the Ketogenic diet, but with no success. Nothing really makes an impact on his seizures. No matter how high we go on the drugs, he seems to always have at least 10-15 seizures a month. The drugs have horrible side effects, which leave him drunk and zombie-like, or with horrible tremors, or in some cases, new seizure types. Our Doctor has tried every drug combination. Each time, we have hope that this will be the combination that will provide at least a little relief. Initially, we usually seem some improvement - but the seizures always come back to the same level.

Michael and I have wrestled with treatment options for Kael. There is no clear path to choose - we just have to take a leap and hope for the best. So we have chosen to reduce his meds as far as we can without negative side effects. He has been on Stiripentol and Clobazam for about 3 years. We have not messed with these drugs for fear of status seizures returning. Although Kael has a lot of seizures (this month, 26 so far), they are all about a minute long. He used to have seizures that were at least 15 minutes long...so we don't want to go back to that. But we've started to wonder if maybe he just outgrew the status. So about 2 months ago, we began to wean Clobazam. In some ways, his seizures have gotten worse. His cycles seem to be moving closer together. But, his good days are really good! He is more alert...he is happier...he is speaking more clearly. So we are holding firm to our weaning schedule in the hopes that he will balance out. We have emergency meds to give him if his cycles get really bad - although we've found that they tend to prolong the cycle. (it's as if he needs to get the seizures out).

He is now completely off of Clobazam...has been since Tuesday. We are considering weaning him off of Stiripentol as well - but that will come with time. We are very interested in the possibility of treating him with Medical Marijuana - but are still not sure how we would get it. There is exciting research that suggests that this may be very beneficial for Epileptics.

We have a group of researchers working on treatments for Kael. They have created a cell line (taken from a skin biopsy). They are testing different drugs on his fibroblasts. We have a list of 7 drugs that created an upregulation of his SCN1A production. He has a mutation on his SCN1A gene - so he has one good SCN1A gene and one bad SCN1A gene - these drugs increase the production from the good gene. None of these drugs are epilepsy drugs. We currently have the medicine in hand, but are waiting to see how Kael does off of Clobazam. Trying this new drug will be our next step, if need be.

Since writing the above a few days ago - I want to add another update. Kael's time between seizure cycles has increased. His seizure activity during the cycles has decreased - so we are very hopeful that removing Clobazam was the right decision.