Soak it Up

Tonight, when the clock strikes 12, I will transform into.....a sponge! I will absorb every single bit of information possible.

I plan on using all of this newley learned information to help my beautiful little princess emerge!

Sweet Dreams

I try to have Aviana take a nap everyday so she is refreshed and ready for her second session of therapy. She no longer likes to take long naps and will only take little cat naps here and there.

Today she didn't want to nap at all and was crying from her crib. What to do....what to do.... I placed her in our bed and called Kama up. Aviana immediately was at ease. I hopped in the shower and once finished, was greeted with this beautiful sight.

It doesn't get any better!

Thankful

I have so much to be thankful for this year~

I am thankful that Aviana is still with us and improving with each passing day.

I am thankful for having the most amazing family and friends.

I am thankful for my parents who will drop everything and do whatever is needed to help.

I am thankful for having the best husband a girl could ask for.

I am thankful for Kama, my constant companion.

I am thankful for all of the new friends we have met along the way.

I am thankful that Aviana is here with us to celebrate Thanksgiving.

I am thankful for my Uncle Roger who loves Aviana without end.

I am thankful for my health~ without it I would not be able to care for Aviana to the fullest.

I am thankful for our neighbors~ they are undoubtedly the best in town!

I am thankful for Sgt. Merenda ~ without him our journey would have ended in that moment.

I am thankful for Mark Ross who assisted with Gary.

I am thankful for everyone who responded to the accident that day.

I am thankful for every hospital, doctor, nurse and every single staff member who assisted in saving Aviana.

I am thankful for Kim and Dave Kennedy ~ they single handedly took every bit of financial stress out of our trip to Pennsylvania.

I am thankful for Trina ~ without her guidance in the beginning, I would never have known how to navigate through this ordeal.

I am thankful to be able to spend every day with Aviana.

I am thankful to everyone who came to visit Aviana while she was in the hospital.

I am thankful for all of the meals friends and family cooked for us.

I am thankful for all who have graciously loaned their shoulder for me to cry on.

I am thankful for Bill~ who never hesitates to go way above and so far beyond.

I am thankful to everyone who has taken the time to make Aviana a beautiful gift.

I am thankful to every one who has made a donation to assist us on our journey.

I am thankful for all who know and love Aviana.

I am thankful for all who do not know Aviana, but love her too.

I am thankful for my Uncle Roger and Aunt Rella who will be hand delivering Aviana to us in Pennsylvania.

I am thankful for all of the skilled therapists we have met along the way.

I am thankful to each and every one of you who follow along. Your presence helps me get through the day. I hope all of you have a safe and Happy Thanksgiving!

With love,

Dream

This morning I had a vivid dream that Aviana, as she is now, looked straight at me and said, "Mama." I was so excited, I was running around and trying to find my Mom, Dave, anyone to hear her say it again. I couldn't find anyone so I went back over to her and we carried on in this fashion~ "Say Mama again honey." "Mama." "Honey, say Mama again." "Mama." "Can you say Mama again, baby?" "Mama." An endless amount of "Mamas." This was one dream I was sad to wake from.

Quote

And in the end, the love you take is equal to the love you make.

~ The Beatles

Dichotomy of Sorts

I have two children.

Did you know?

Not Aviana and Kama.

Not Zoe and Aviana.

I have Aviana and Aviana.

My first child was a sweet girl, full of spunk and laughter. She exuded life and love. With each step, both spilled forth. Sadly, that pint sized beauty was ripped from me, from us.

In her place, another little girl. She too, is sweet and sassy. We all love her so, but she's much different from my other girl. She's my second daughter. She possesses some distinct characteristics of my first, but very few.

I will love this child also, to be honest, I will love this child more because I'm now a completely different person myself. I did not appreciate my first child. I did not see the absolute beauty of our daily life together. I desperately wanted to, but couldn't achieve what I currently have. I appreciate this new little girl with everything I have and everything I am. I want only the best for her, and will go to the ends of the earth for whatever that may be.

I walk through our home; the walls and shelves are adorned with pictures of our two daughters. I love them both, but the fact remains, they are two completely different people. They share a commonality of what siblings may. You can tell they are related. They look similar. They even act somewhat the same, but that's where the parallel lines end.

Losing a daughter while she's still here is a strange concept to grasp, or explain. Everyday, I have trouble understanding myself.

I will always remember my first child. I will miss her every day for the rest of my life. She will always have a special place in my heart, but sadly, I have no other choice than to mourn her, to grieve for the little one I lost that day.

Followers

Thank you,

Thank you,

Thank you.

Thank you to everyone who is following along as we stumble our way through the vast world of brain injury. I also wanted to thank everyone for continually posting encouraging comments. I know how hard it can be to find the right words to post on a blog of a person who is going through a tragic situation.

I have followed a few blogs of people who have either lost their spouse or their child and (in the past) had been rendered speechless. I appreciate each and every one of you who stand beside us on this difficult journey. You have a way of keeping my spirits lifted and aimed in the right direction!

With love,

Can Do

I originally wrote this post last Monday, but we were so busy and then some other sorts of frustrating things happened. Needless to say, this post got away from me.

After getting through a week of meetings that were focused on what Aviana could not do, I choose to begin this week by concentrating on all of the things she can do! Aviana is becoming more and more aware with each passing day. The reason I do not post more often about the changes she has made is because many times they are so very small and over the course of time, I am able to come up with a whole list and then post them all at once.

I remember speaking to one of the neurologists upon leaving Kaiser. I had just had a meeting with him in Aviana's room. I left a while later to go downstairs and get something to drink. I happened to see him in the elevator and we talked. It was strange, once in the elevator he was speaking to me in a different manner. While he was always very nice, this time, in this moment, he was speaking to me as a caring friend would.

He told me that it would take a very, very long time for Aviana to heal. He told me it would be so, so slow. He said to not look at her progress in terms of days or even weeks, but to look at it in 3 weeks to one month increments. He said she would sometimes take two steps forward and one step back or even two steps forward and four steps back. This conversation stuck with me. He was absolutely right about the pace. Her progress is that of a snail's pace, but I am so happy to say she has yet to take a step backward. She has slowly and steadily moved in the right direction. I could not be happier about this.

Let me tell you how she is doing as of today.

~ she is much more alert.

~ she moves her head around much more.

~ she is aware of her surroundings and is much more engaged.

~ when I ask her to touch Kama's paw, she reaches over much faster than she ever has. She will do it repeatedly as well.

~ we asked her to reach up and touch my face one night and she did it four times. She also did the same to my mom.

~ her facial expressions are returning. She gives me attitude at times and has now perfected her frown. It breaks my heart when she frowns, but I am happy to see her with emotion. She has possibly smiled a few times, but I am not completely going to count that until we are more sure.

~ I was standing her up the other day and at one point gave her a break. I was so proud of her that I was hugging her and she reached her arm up and put it around me. No one was there to share in my joy or to even see it. I looked over at Kama and said, "Did you see that? Kama, did you see that? Wasn't it great?"

~ when we pick her up and carry her around the house she puts her arm on us in a way she had not before.

~ she will put her hand in mine if I ask her to. She is getting faster and faster at it. She is not always consistent though, she has to want to at the moment I am asking.

~ she has started watching Mickey Mouse again. ~ she holds her head up on her own for 4 minutes.

~ she works her hand over and pushes a button on one of her toys when I ask.....sometimes.

~ she is making more and different sounding noises lately.

~ in the last week, when Aviana is cold she will repeat a quick, sharp, Brr! I think it is her first little attempt at a word since the accident. It is music to my ears!

~ she goes to town on her Dum Dum sucker like never before. I think the reason she kept eating the barium (mixed with apple juice and yogurt) is because she desperately wants to eat something. Honestly, who would continue to eat that??

~ she will grab for our hands when she is in her crib. She loves to put her arms in the air often and move them all around. I keep trying to get her to touch her hair and finally she grazed it yesterday morning. She has always known what I am saying and has tried and tried, but yesterday she finally did it.

She is up to about 20 or more minutes of sitting like this.... She enjoys hanging out with her friends. When they are over, she tends to keep an eye on them. She doesn't even mind when they touch her hair. These boots are made for walkin' and that's just what they'll do....someday. Aviana seems to like her new pair of shoes, they do not bother her and she doesn't mind when they are on. Prior to having the boots, Dave would hold her up and I would spend all of my times straightening her ankles. She would be able to hold her own weight and Dave would just merely hold her for balance. She is able to do this for longer periods of time with each new week. Now with the boots, her feet and ankles are in the right position and this task is much, much easier for all involved. We now sit Aviana on a stool and hold onto her arms. She can push herself up into the standing position on her own. We just started doing this, but were so happy with how well she did this from the start. She does however get very tired, very fast and needs assistance. She is doing better in physical therapy and can hold her head up much better there too. She is such a cutie pie, her arms are getting more relaxed every day. Aviana tends to resort back to her postures when cold, nervous or mad. Arms bent up and toes pointing out. Her physical therapist had commented about her sleeping in this fashion. I had never seen her sleep like this and have only seen her sleep in a completely relaxed state. She was surprised by this fact and said, "I guess there is a first for everything." I was so happy to hear that!! Of course she always makes time to love on Kama and hold her paw! I wanted to wish my dear, sweet Kama a Happy 7th Birthday today. I love you to the moon and back....and then some!!

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