Shattered

We moved to our neighborhood in 2001. A brand new elementary school was built at the end of our street. Even then, when children were not a blip on our radar, I pictured walking our future child up to school and back every day.

Finally, the day was closing in on us. Aviana was to start preschool there on September 8th. Dave was going to take the day off. We were going to walk her together. Instead, we spent September 8th bringing our severely brain injured child home from the hospital after an almost three month stay.

The way I feel at this very moment is as if our dreams were a windshield and some asshole took a gun and blew that windshield out. Each and every shard of broken, cracked, falling glass was a dream we had for Aviana. Each dream, blown to smithereens.

So today, instead of walking my baby girl down to the school at the end of our street, I will drive her to another school. I will carry her in and we will complete an evaluation of the Severe-Multiple Disabilities class.

Can you tell I spent my morning watching old home videos? It never does me any good, but sometimes I just have to see that little girl. I miss her.

Ewwww Barium!

I carry my camera everywhere. There is almost never a time when I do not have it. In my opinion, there is not one single place that Aviana does not look picture worthy. So naturally I wanted to document the barium swallow test yesterday.

I reached for my camera and quickly realized I had put the battery on the charger (I know Dad, I am supposed to always carry an extra on my person :-) At that moment I was sure wishing I had listened. The lighting was so strange I could not even get a quality picture with my phone.

As they poured the barium down her throat, she made some of the most priceless expressions I have ever seen. I wish so badly I could be posting them for all to see : ( In witnessing Avi's countless expressions, I am convinced....barium must be the worst tasting substance on earth!!

I was excited as excited could be upon entering the x-ray room and slightly deflated as we walked out. Out of every 5-6 swallows, there is a swallow where a small, small amount of food is entering Aviana’s lungs. They thought one of her cords may be paralyzed from being intubated for so long. I thought I was finished with the "first I’ve heards”, but not so. They are hoping to re-test her in 3 months.

After watching Aviana eat through a tube connected to her stomach for the past months, I wanted nothing more than for her to be able to enjoy some food again. Keep in mind, this is the child who would work a party like no other. She would shine her beautiful smile at perfect strangers in order to get some food. If this stealth maneuver did not work, she would resort to stealing off their plates while they were looking or not. An unattended plate was her plate of choice. We always had to keep a good eye on her.

I have tears falling down face as I think back!! Please wish us luck at the next appointment. This was not the girl who could take food or leave it. She was not a picky eater. She ate anything and everything. I had not met too many people who shared my absolute, unwavering love of food. When I met Aviana, I had not even met my match; but quickly realized she was actually in a stratosphere of her own!

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......when you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Quote

"When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has been opened for us."

~ Helen Keller

I'm Out!

Have you ever heard this saying.... "When there's a hole in your heart, there's a hole in your wallet?"

I'm going shopping : )

Life Lessons

I almost never forward e-mails, but I opened this one from my Aunt Paula and wanted to share!

Written By Regina Brett, 90 years old.

"To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written. My odometer rolled over to 90 in August, so here is the column once more:"

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. No one is in charge of your happiness but you.

25. Frame every so-called disaster with these words "In five years, will this matter?"

26. Always choose life.

27. Forgive everyone everything.

28. What other people think of you is none of your business.

29. Time heals almost everything. Give time, time.

30. However good or bad a situation is, it will change.

31. Don't take yourself so seriously. No one else does.

32. Believe in miracles.

33. God loves you because of who God is, not because of anything you did or didn't do.

34. Don't audit life. Show up and make the most of it now.

35. Growing old beats the alternative -- dying young.

36. Your children get only one childhood.

37. All that truly matters in the end is that you loved.

38. Get outside every day. Miracles are waiting everywhere.

39. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

40. Envy is a waste of time. You already have all you need.

41. The best is yet to come. 42. No matter how you feel, get up, dress up and show up.

43. Yield.

44. If you don't ask, you don't get.

45. Life isn't tied with a bow, but it's still a gift.

Too Much

There are moments when it all becomes just too much. Sometimes the magnitude of the situation sets in and I actually start to travel down the path of total destruction.

Yesterday I decided, for a multitude of reasons, to journey down the path of complete devastation. It was a short trip, but a trip nonetheless. I did not intentionally stumble down this trail. It was more like I was being thrown down against my will.

For the past two months, I have diligently worked on getting us dialed in with every possible entity which helps with brain injured children. Yesterday the phone was ringing off the hook. I was setting appointments, putting out fires, just plain running around like a chicken with my head cut off. That’s a disgusting saying and I will never say it again. Ewwww.

Needless to say, I was already on the edge of reasoning from dealing with all of these entities, Kaiser Pharmacy being my all time favorite! The icing on the cake was when I took Aviana for her occupational therapy evaluation. They concluded that she was not ready for this type of therapy. All of our hard work flashed before my eyes. The many hours were at the forefront of my mind. This conclusion made me sad beyond belief. Sad for her. Sad for us. Just plain sad, sad, sad.

As I heard this news, I stared right through the therapist at the children running and jumping on the playground. Their laughs echoed through my head and stabbed through my heart. As I drove away, a Beatles song was playing in my mind like a broken record,

Your lips are moving

I cannot hear

Your voice is soothing

But the words aren't clear

You don't sound different

I've learned the game

I'm looking through you

I felt sick, I wanted to leave, I wanted to run. I usually deal with this type of information so much better. Yesterday was different. Luckily, when I got home I had another meeting. This meeting was with the two very kind ladies who visited Aviana just prior to the accident and had released her from speech therapy.

I had the great pleasure of sitting and answering one hundred questions about Aviana’s current state. The meeting went something like this, no she can’t, no she never has, I’m not sure she understands, I don’t know that she knows that, no, no I don’t think so, yes, yes she has done that, no, I don't know, no, no, I don't know, yes, she did that once, no, no, no, no, no, no,no,no,no, no, no, no, no, no, no,no,no,no!

These meetings can be a little exhausting with a hunk of mind numbing tied in with a whole lot of reality. I usually leave my body (in a sense) for this type of appointment. On this day in particular, this one was different. I was unfortunately present and in complete attendance!!

Sorry!

Sorry was always one of my very favorite games. Lately, I can’t help but feel as though I am in a real life version of my preferred board game. I feel we are the pawns moving both forward and back, day in and day out.

If you stretch your mind way back to the days of pulling the Sorry game from the top shelf, you may remember that it was not merely a game of just forward and backward motion. Every move across the board involved a great deal of strategy. In order to defeat your opponent you had to carefully assess every situation before proceeding. If you remember, moving forward was not always a good thing and moving backward may just have put you in a better position.

I feel all of the same rules of this favored board game apply to my life now. Prior to the accident, Aviana would pass her various stages of development and we would happily and readily push those items out the door. We would then bring in new items for the next phase of her advancement. You know the routine.

For the past months we have found ourselves in an uncharted territory. Instead of continuing on our usual path, we were shoved down a detour, and have in some respects gone back in time. It is like musical furniture and toys in our household.

The following is a snapshot of the past two months.

Out with the booster seat, back in with the high chair.

Out with the Tinker Bell undies, back in with the diapers.

Out with the toddler bed, back in with the crib.

Out with the forks, spoons and plates, back in with the bottles, just for measuring and storing purposes, not eating.

Out with the advanced playthings, back in with the baby sensory toys and books.

By all accounts it looks as though all we have done is move backwards in the Brain Injury game, right? Not so. Yes, we have moved backwards, but remember the board game...backwards is not necessarily always a bad thing.

With every move, we have grown as individuals, as a family. We have become stronger as people. I always felt my family, myself included, was a group of loving, caring, compassionate people. Above all, I always felt we were solid as a rock. You would think that after being dragged through the mud by our feet we would be beaten down and knocked out. What I see is just the opposite.

Experiencing Aviana as she is now has made one thing crystal clear~ We are more loving than ever before. We are caring beyond belief. We have become compassionate to every situation, realizing now more than ever that we do not know what personal journey someone else may be on at any given moment. And of course, we are stronger than we ever thought possible.

That being said, I am confident when I say, together we will strategically navigate back and forth across our very own board game until we defeat the opponent.

You know who the opponent is, right?

Avi Was a....

pimped out cat!! I'm just kidding, well not really. I won't bore you with the details of how I ended up with this particular costume. It doesn't matter though, Aviana could wear a garbage bag and still look like a million dollars! I hope you all had a nice, safe Halloween!!

Quote

“Some people think it's holding on that makes one strong; sometimes it's letting go.”

~Sylvia Robinson