First and foremost, we wanted to thank everyone who donated to send Calli to New York, she finally was able to go. After her first seizure last Wednesday, we just prayed that she would not have another, and would be able to go to New York on Friday with her friend Maggie, and her mom, and myself.
I will post a few pics- it was a very bittersweet weekend. We did the most amazing and awesome things, and we experienced a lot of heartache and trials while we were there as well. Suffice it to say: New York is not a very handicapped/wheelchair friendly place.
Calli was so tired the whole time, but we were able to do some pretty awesome things. Thank you so much Smile of a Child, who paid for our Hotel at Le Parker Meridian,and for the Wicked tickets. And thanks to Jeff, Lori, Amanda, Alyssa and Zack Derstine for helping to raise money for her trip. Thank you MOST OF ALL, to the many many strangers, friends and family, who donated and bought bracelets- we have no idea who most of you are, but thank you from the bottom of our hearts.
The week leading up to New York, Calli was so different, very tired, weak and had lost the feeling in her right leg. She was now a full lift for me, and could not walk. On Wednesday, she had a very scary seizure and we were not even sure if we should go.
Here is a quick rundown of what we did-drive for a long time, we had to stop several times for potty breaks, and to eat. Once we got in, Calli was so exhausted that she needed to sleep for a few hours. I was able to rearrange some of our itinerary for the weekend to allow for extra time for her to rest.
Friday night, after her nap, we walked several blocks from our hotel to Rockefeller Center and walked (rolled) around, went on an NBC studios tour, got souvenirs for Aidan and Mike, and went all the way up to the Top of the Rock-where we saw amazing views of the City at night.
|apparently tunnels under water freak out Mrs. frank :)|
|First order of business: Take a nap|
|then go potty :)|
|eat a snack|
|kinda hard to see in a wheel chair- but Amy and I held her up to see all the lights.|
We got in so late, so we were looking forward to sleeping in a bit. On Saturday, we ate at Norma's a really yummy french breakfast place...out food was so good!
|thought this was a humerus photo with wicked and only the truth...|
|So Smile of a Child and The cast of Wicked are pretty awesome people, Calli was honored to meet the actresses- they were really humble and sweet.|
|I was really excited too!|
Then, we went to eat at the View, the only revolving restaraunt in New York City- it it really cool to eat and see the entire New York skyline form lots of angles. Plus- we got to see it at sunset :)
After the ride, I wanted to be adventurous, so we walked a bit from the seaport through wall street, and into ground zero...
|our wonderfully funny and delightful cabbie!|
After getting back to the hotel, we walked to central park and took a carriage ride- Calli really wanted to experience it,but I was kind of wondering how on earth I was going to lift her high up into a carriage. I am really strong, but not that strong. So, Our wonderful driver helped me,and as we were about to lift her (and failed), a wonderfully short but stout Irish driver came and in three seconds she was gently and gracefully lifted by a kind, tall, Brooklyn New Yorker and a very short Irish man! IT was a blessing, i cried.
We were very thankful to be home, in our own beds, and our own toilet :)
Calli's bedroom is 7 x8, so Mike and I have had a very hard time getting Calli in and out of her room with a walker, wheelchair and commode to fit in and move around...not to mention, two out of three dogs sleep in her room. So a few weeks ago, I moved Aidan downstairs and made a really nice, quiet place for him.
On Mother's day weekend, which by the way was Mike's birthday too....we knocked down the wall between Aidan's old room and Calli's in order to make one more accessible room for Calli.
|Calli's writing has become very shaky|
|Aidan found an old drawing and gave it to Dad|
|our new family room- my bed!|
|Calli's room before|
|Roscoe never ever ever leaves my side|
|so behind the Wall..apparently a mouse made a home|
When we came home from New York, Mike had the new walls all framed, and drywalled. On Monday, Calli was so very tired, and just slept all day and all night long.
Tuesday was our regular CHOP day, and my sister had offered to go with me to help, and I should have said yes to her, because in one week's time, Calli just could not walk or stand or lift her-self up anymore. She was trying and trying her best, but could not do it.
Do you know how hard it is to pick someone up out of a wheelchair that is taller than you, and try and pivot and put them on the toilet, but first you must pull down their pants, and not drop them...that someone is my child, my 14 year old teenage child.
Calli has been through so very much in the last week. Toileting is so tiring, and and I use every ounce of my energy to try and do it safely and comfortably for Calli. At times, her bladder just stops working- So we try every trick to trick her brain to pee...and other times...she cannot hold it- This week, her dignity was seriously accosted. It is so sad to see my sweet girl cry, and be mad at herself, for things she cannot control or help.
We came home on Tuesday and were both wiped out. I was glad to sleep in on Wednesday, by now, Calli had been sleeping in her bed in our room, until her room is finished. She was still so sleepy on Wednesday. I was trying to get her up and she just had the worst headache and was crying out that her neck hurt so badly, and then she started shaking and convulsing and had a seizure. I began to pray again in the spirit, and this one lasted for about 5 minutes.
She was awake, and this time, her head just hurt so badly. Then not 5 minutes later another one came, and this time it was 10 minutes, I began to pray and then she just cried and and cried and started saying "I can't do this anymore." She turned very pale, stopped breathing, and was just shaking and shaking...it seemed like hours. I called Mike right away and I said was- "I need yo home right now." I hung up the phone and then called the doctor.
We had a choice.
Go tot he hospital, they will admit her and make her as comfortable as possible-I was told to prepare for the worst.
I waited till Mike got home,and he just hugged her and cried.
Mike and I asked Calli what she wanted, she wanted to stay home with her family, and dogs, and smells. That entire day and night, she seized 9 times. each one different, there were two that we thought she was gone. There are no words, to describe what we saw, heard and witnessed. Poor Aidan, was home all day too, my mom was there, and my Aunt Alison, and Abbe came too, they were all working, trying to do my job, and take care of the house,and Aidan, so I would not have to leave Calli's side.
|Aidan made nunchucks all day|
|Can you see her lady bug antennae?|
|THis day was a beautiful day, that boasted of Calli's favorite kind of clouds|
All day, I played worship music, and lay with Calli, Mike and I took turns watching her. When she slept deep and long, I painted her room while Mike stood by.
Mike and I prayed over Calli during her seizures, we prayed together in the spirit, and could do nothing else. Poor Aidan, thought she was dead, was so confused...it is so hard for him, please pray for him.
I knew she would not die.
I did not care what anyone told me-she will live.
We walk by faith not by sight. When we see everything getting worse, we see it, and we walk right by it, we look ahead, we do not focus on the things that are lost- they will be repaid back 1000 fold or more....Our focus is on living, not dying.
Thursday morning, Calli woke up and was moving her head from side to side stretching it! You see this itself was a miracle. Each time she moved her head the slightest bit the day before, it through her into a seizure. So, Thursday was uneventful, Calli had a good day. We had many people in and out of our home, we have set up nursing services, and extra help in the home, I need two people with Calli at all times ... and other therapies that will be a support for our family have been started and we are looking forward to art therapy and other fun things.
|didn't Aidan do a good job?|
Today, May 25 (well now it is later, because I am up to lat writing) but today, is the day one year ago that they found the tumors in Calli's spine.
Today she has two seizures, but that does not matter.
Today, we cuddled,and I got a shower for the first time in 3 days (yuck!), with the help of Mike and my sister was able to go to the grocery store for a few things. We could never had made it through the last few days without My mom, my aunt Alison,and my sister Abbe.
God is still good- all of the time.These moments we have had over the last few days have been bitter and they have been sweet.
DARE TO HOPE
it will not be seen...
it will be heard
miracles are real.
Jason upton - Great river rd