Tiny Caskets

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.

Lisa needs. . .

(I borrowed this picture from another blog, but now I can't find it to give her credit?

Seriously that's what I need! Chocolate!)

This is too funny. It's actually a version of a note going around on Facebook (Which I am totally addicted to and is one of the main reasons why I neglect this little blog. Did I say that outloud?) Anyways, you go to Google and enter your name plus the word "needs" all in quotes (so "Lisa needs") It is pretty funny to see what comes up in your search. It's even funnier when done in a bar with good friends and an iPhone after a few drinks. . . Ehh hemm, Amy? Jennifer? What do you need?

Heres what you do: Go to Google.com and do a search. Type in your first name and the word needs after it in quotes. Then copy the top ten things Google says you "need." O.k. here goes:

1.) Lisa needs braces. (I had braces when I was 15, but some of my teeth did turn back, so I guess this is kinda true?)
2.) Lisa needs to get a life! (Hmmmm. I'm pretty happy with the one I've got thanks!)
3.) Lisa needs a nap. (Amen!)

4.) Lisa needs a home ASAP. (Nope, I'm safe and sound in my beautiful home!)

5.) Lisa needs your help! (O.k.?)

6.) Lisa needs help with her vertical blinds. (Those darn vertical blinds. . . )

7.) Lisa needs a bigger grin. (Hence the braces.)

8.) Lisa needs braces. (Holy cow. This was like every other google hit! I must seriously have bad teeth?)

9.) Lisa needs a new concealer. (Yes! Yes I do! I have dark circles and age spots! This one is true!)

10.) Lisa needs to be committed (and the tag line underneath: "Okay all I'm going to say is that girl is very unstable. She seriously needs her head checked. " ) Too, too funny! True?

Soooo, Bethany, , Rachel, and all my Facebook bffs, what do you need? (Some of you need to get your own blog- That's what you need. Umm hmm. You know who you are:)

Good Intentions

When I first started this blog, I had every intention of updating it often. Then life happened. In a good way. I don't find as many hours in the day this spring as I did last year at this time to pop in and upload pictures and tell stories. I'm hoping that someday things will settle down (Right.) and I will be able to be a better blogger! For now, you can send me to blogger time out. . .

Since I last updated, things have settled down for Miss Avery. We think that our last trip to the ER was due to her anti-seizure medication levels being off. I could write a book about the woes of weaning and adding seizure medications. Hate em'! She has had a lot of good days in the last three weeks which is such a blessing. Right now sweet Avery girl is my shadow. I mean literally. She is pretty much within twelve inches of me nearly all of her waking hours- and sometimes her sleeping hours too! She just doesn't want to let me out of her sight and I'm o.k. with that, it just makes things complicated. Things like laundry, cooking, cleaning and blogging can become tricky with a 35 pound toddler attached to your hip! Sometimes I can get away with talking on the phone for long periods of time because I can continue to play or do whatever it is Miss Avery insists on while holding the phone between my shoulder and ear:)

Kaylen has been busy with school, dance, Girl Scouts (and selling cookies!), birthday parties and losing teeth (a total of four now!) She is growing up so fast, with her seventh (gasp!) birthday party fast approaching! We are playing around with ideas for a theme right now, but I think we are going for a cross between a camp-out and a diva slumber party. We'll see how much time I find in the next month or so to pull something together! Britton's schedule is still crazy with winter sports just ending and spring sports beginning. Many weeks the girls don't see him for several days in a row because he leaves before they are awake and gets home long after their bedtime . Two weeks ago, I spent a week in D.C., advocating for increased funding for TSC research, have been planning our trip to California for Avery's surgical evaluation at UCLA over spring break, and am trying to stay on top of assignments for my Master's class, besides working part time and keeping up with two very busy little girls. I don't mind being busy, I just wish sometimes I had a few less items on my to-do list:) So for now I will leave you with a few random pics of the main reasons why I don't find much time to blog these days! Excuses, excuses. I know:)

Pray for Avery

Our sweet girl is really in need of a break right now. Yesterday was a long, horrible day. She woke up from her nap absolutely hysterical and was inconsolable for several hours. She vomited a few times and then just passed out (as in fainted) and I panicked.

We spent the night in Children's Mercy getting lab work and a CT scan but the doctor's were not able to explain what caused this particular event or tell us what to do to prevent it from happening again. Welcome to life with TSC.

It took seven sticks to get this IV. Our sweet girl is bruised and looks like a pin cushion this morning.



After a head CT scan to rule out changes with her tumors Avery was so out of it from the sedation meds that she kinda forgot to breathe. She struggled to keep her O2 sats up and needed blow by oxygen for a while.

We are home now, with few answers and many questions. Thank you for checking in on our sweet girl and saying a prayer or two for us!

Hurting

My heart aches for this family today.



I have been following Cora's short battle with cancer since Bethany posted about it on her blog. For some reason this precious angel's sweet face and her family's obvious love for her really got under my skin. It just hit a little too close to home even though we are not battling cancer.


Please pray for them and hug your babies a little tighter today. Every day with them is a blessing, not a guarantee.

Who knew?

Who knew that autism could be so beautiful? When you look at this precious face do you see the stereotypical disabled, rocking back and forth, spinning, grunting child with autism? Probably not. When I look at this picture I see perfection. I see love. I see my life.



Would you believe that the little girl in this picture spends most of her days crying, screaming, and trying to injure herself in anyway she possibly can. Most of the time she beats her head against the floor (preferably hardwood or tile) the hat hides the bruises well. Sometimes she resorts to slapping herself against the ears, pulling her hair, or biting her own wrist.

Why?

Why sweet girl?

It breaks my heart and most days I want to just lie down next to her and bang my own head against the floor in frustration. Sometimes I think if we could fix just one thing on Avery's list of challenges this would be the first thing. Just when I think it can't get any worse it does and I wonder if God is still listening to our pleas for mercy. . .



Who knew autism could be so beautiful?

keep it Simple

I've been thinking a lot about the whole New Year's resolution thing. It's almost time for people to start falling off the wagon isn't it? I know I've missed two days of planned exercising and I didn't even 'resolve' to lose weight. I'd like to be healthier and shed a few pounds, but am I resolved to do it?

Instead I've decided to do something a little different this year. I plan to keep it simple. Every morning as I stand at my kitchen sink mixing meds and chocolate milk (not together) and running through my mental to-do list, I stare at this little black sign. It's been there since shortly after we moved in. I'm not sure why I bought it or even what "Simplify" signified to me at the time. Probably I just liked how it looked.



But that's what I am going to do this year.


Simplify.

No complicated resolutions or plans. Just to simply enjoy this life, as complicated as it may be. I plan to simply be happy. To simply be.


Sounds simple doesn't it? I'll let you know how it goes.