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....
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!”
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):
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."
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!