I didn’t think I had anything else to say about our current situation because the last few weeks have been an absolute whirlwind. I don’t think that I can possibly explain all that has taken place in such a short time in this small space but if you will bear with me while I vent for just a couple more paragraphs then I will try!
This ridiculous disease has changed absolutely everything about our lives. Tuberous Sclerosis has now officially ruined two of my favorite t.v. shows. Yes. That’s right. A genetic disorder has robbed me of two hours of pure viewing entertainment.
I am a huge Grey’s Anatomy fan! Before Avery got sick I watched all the drama unfold, sometimes on the edge of my seat, and breathed a huge sigh of relief as the credits rolled and everything ended neat and tidy. The tumor was removed. Ta da! You’re cured! The perfect donor match for an organ transplant is found at the last second and within an hour the patient is lying in bed surrounded by family giving thanks for their great fortune. Now I watch and just yell at the screen. “Are you serious?” I mean really? How dumb do they think their audiences are? On a recent episode Dr. McDreamy performed an open craniotomy (exactly like Avery had during the week of her grid placement) and his patient, in an attempt to kill himself, beat his open skull against the back of his metal bed repeatedly. A few minutes later he is carrying on a conversation with the beautiful nurse who has taken pity on him. Right. Because that’s what you do after you bash your exposed brain against a metal bed.
Ummm hmmm.
Let me just clue you in. When a doctor is performing a nephrectomy (removing someone’s kidney) in the OR they don’t turn to the doctor next to them and say “Oh, no! We have to do a nephrectomy. We have to take out his kidney.” They don’t have to explain to their colleague what a nephrectomy is because, hello!, if I know what a neprhectomy is than so does the doctor standing in the OR! Or at least I sure hope so!
I digress. This episode was so far out there, but one part really struck a nerve with me. One of the characters was giving another doctor a hard time for being callused and not having empathy for her patients, in this case children. She launched into a dramatic monologue about the fact that she not only has empathy for the children and their families, and especially the patients she loses, but it bothers her so much that she dreams of tiny caskets.
I too, have nightmares of a tiny casket.
(Bear with me. I’m not being morbid. This is my reality and I’m just being “brutally honest” as so many of you have commented about my writing.)
I’ve had the same dream several times and it never fails to leave me sick to my stomach and curled up on the floor next to Avery’s crib. In my dream I’m standing at the back of the church I’ve gone to since I was born. I’m standing at the end of the altar looking toward the front of the church and I know that there is a tiny casket at the end of that altar. The altar my parents carried me down to baptize me. The same altar I would years later carry Kaylen and then Avery down to be baptized. The altar I walked down to receive my first communion and the altar that my father walked me down the day of my wedding. In this dream I’m walking down the altar toward the tiny casket and I see people I’ve known my whole life filling the pews. I fight my way up out of this dream every time, willing myself to wake up. I force myself up out of the depths of my sleep into consciousness before I reach the end of the altar. I never want to reach the end of that altar, because in my dream I know who rests in that tiny casket.
This is just another of the many ways this horrendous disease has changed our lives. Even our sleep isn’t a place to escape from it. *And please don’t email me suggesting therapy. My dear friends, been there done that. The one time I spoke with a therapist he suggested I embrace the philosophy “Carpe Diem” In other words, “Seize the Day!” He actually said that after I told him Avery’s story. Did he not hear a word I had just said? “Carpe Diem?” Seize the day? Seriously. I busted out laughing right there on the leather couch! Seize the Day! Are you kidding me!? We’ve been seizing every dang day for two years. I can only imagine what he wrote in my chart:) This is my therapy:)
My other favorite show is the Bachelor. I know, I know. It’s a little trashy but it’s also very funny. So if you’re followed along, this season’s bachelor was the much loved Jason. Towards the middle of the show he had to choose between two girls that he supposedly cared about equally. On one date in particular he took two girls and at the end of the "date" he had to decide which girl to send packin’ and which girl to ‘keep.’ Really. It sounds much worse than it is. But in his obvious distress he made the comment, “It was the hardest decision I’ve ever had to make.”
And now I’m out two good shows.
The hardest decision he’s ever had to make.
If only. Right now Britton and I are trying to decide if we should allow surgeons to cut into our precious girl’s brain for the third time to remove most of what remains of the left side of her brain. Or perhaps we should we continue switching medicines on her like musical chairs hoping that one of them will eventually stop the seizures? Or perhaps we should do nothing and just accept that they will always be a part of her life, all the while, hoping and praying that one of them won’t take her life. I’ve told many friends that having a child with a devastating disease is like living my worst nightmare. That’s not exactly accurate is it? Losing a child to a devastating disease is certainly my biggest fear. I worry every day that I will lose my Avery Elizabeth to a seizure. It happens my friends. The monsters under our beds are very real. We live with them day in and day out. So I’m not being morbid in the slightest when I tell you that I am so afraid of losing my baby girl.
How is anyone supposed to make these kinds of decisions? We have prayed, and weighed the options, and researched, and prayed some more and on Sunday we will leave for LA for Avery to undergo her second surgical evaluation at UCLA Medical Center. Depending on the results of that evaluation, Avery will be having her third brain surgery as soon as early May, but more likely it will be closer to June. My brain can’t even begin to contemplate these sentences I just wrote.
We are also faced with the unthinkable decision of temporarily dividing our family in order to get Avery closer to the therapy she so desperately needs. Through an amazing connection we made a few weeks ago, we have found a center where Avery could receive the recommended forty hours a week of ABA therapy. However, it is in Kansas City and we are here. The jobs that we love are here, our home and the community that we love is here, Kaylen is here and Britton is here. Our family is close by. But the therapy Avery needs isn’t here. We can’t just pack up and move. So do we divide and conquer? Do Avery and I leave Britton and Kaylen during the week so that sweet girl can get the help we believe in our hearts she needs? How can I leave two of the most important people in my life? How do I choose between my girls?
So Jason. Buddy. If choosing which beautiful girl to date is the hardest decision you will ever have to make, consider yourself blessed.
So there you have it. You’ve laughed, you’ve cried. I’m back. Thank you so much for your kind words and messages after my last not-so-uplifting update (on Avery's CarePage). I know from the emails and private messages I received that many of you were concerned that I am suffering a “crisis of faith.” We are very tired, but our faith is the only thing that keeps us going. If I’ve learned anything in the last three years, it’s that it’s o.k. to get angry with God sometimes. He is bigger than our anger and he can handle it. When your children are mad at you because you won’t give them something they really want, do you turn your backs on them or write them off? Of course not. I delight in the Lord and know, despite what I feel and think sometimes, that he will never leave or forsake us. We know that God is God and we are not and this is enough. I think sometimes we’ve been taught to tiptoe around God, but we believe and scripture tells us it’s o.k. to come boldly before the throne.
Thank you for continuing to do just that for Avery and our entire family.
"Let us, therefore, come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need" Hebrews 4:16.
