Friday, August 3, 2012
I have to tell you that I am rarely speechless. I usually always have something to say (which often times can get me in trouble!) But I came home from our trip to California for Parker's therapy and found this in my mailbox.
Not sure if you remember me from high school or not - but as you know facebook is a great way to reconnect. I was so touched by your story with your precious little Parker that I wanted to send a contribution to go towards his medical care. Our youngest has Chrones and I know the toll it takes on parents emotionally! I pray for your family daily and send lots of hugs and love your way! Please put this money to whatever use you see fit for Parker!
All My Best - Rene"
And I was speechless.
Of course I remembered Rene. But we were not even good friends in high school. I couldn't believe that she had gone out of her way to write me a letter and send a generous contribution to a little boy she didn't even know!
I just sat in my kitchen and cried. (I know, it seems like I am always crying, right?) But seriously, this was so special to me. I have saved the letter and will put it in Parker's scrapbook.
Rene, if you are reading this (and even if you are not) please know that I am so incredibly grateful and will pay it forward when we have the chance. You gave me a very special gift, and it was not just the money. You gave me the gift of knowing that my little man is loved and supported. You gave me the gift of knowing there is so much good out in the world. On a bad day (and we do have those), it helps me to remember this. I hope you know what an impact you had. Thank you. I am putting your money towards his next trip for therapy which is next week.
I will pray for your family's health and happiness.
Here are my ramblings...
To begin with, as we were pulling out of the driveway for our long road trip Parker was already squealing and smiling from ear to ear. I have never seen him so thrilled and excited. Was it simply because he was getting to skip his nap? Was it because he had Grandma and Mom in the car all to himself? Or did he just know that something good was about to happen? Either way, he was a wonderful traveler - very happy. Although I really would have liked him to get some sleep in the car for his own good, he was having none of it. No sleep 'til San Rafael!
We spent the night in Medford which was a nice half way point. Parker was so over-tired by the time we got there, he ate a little and then passed out on the bed. This was the only night that it was easy to get him to sleep. We got up the next day to sunshine and a beautiful day. We loaded up the car again and headed off to McDonald's for some breakfast and coffee. And then we were off to Cali!
This part of the trip was quite a bit longer and seemed to really drag on. But eventually we made it. We went to the guest cottage that we were going to rent. It was much cheaper than a hotel so we were happy to have that opportunity. I was envisioning more of a "cottage" and it was more of a "room off of a house". It was VERY small. The bed was a futon and the bathroom was the size of a closet. Both my mom and I couldn't imagine spending a week here. There wasn't even space for Parker to sleep. Crap. So we get out the computer and try to do Priceline to see if we could get a cheap deal at a hotel. No luck. We are getting desperate at this point and start calling around. We end up finding a hotel that is going to be twice as expensive as we were planning to pay. Crap again.
So we load everyone up and head out to find the hotel. As luck would have it, it was actually much closer to the ABM center, and it was nice. We had to ask for a microwave because we have all of Parker's blended foods that we need to be able to heat. I had time to get all unpacked and settled in as my mom was feeding Parker dinner. Ok, we are set. It is going to be a good week.
Then comes night time. Now as many of you know, Parker (and the rest of the boys) go down around 7:00/7:30 for bed and they sleep a good 12 hours. I love this! I love that they get good sleep and we have some adult time. The bed time is pretty easy also...as long as they have their own room. Ummm...we are in a hotel, and he doesn't have his own room. Crap.
|He looks tired...right???|
7:30 - not sleeping.
7:45 - not even thinking of sleeping.
8:00 - having fun squirming around in his big bed
8:15 - crying because he is so tired
8:30 - not crying, but not sleeping
8:45 - having fun getting a back rub from Grandma
9:00 - no sleep
At this point I have eaten a few bites of food and given some to my mom. I put the rest in the fridge and ended up laying down and falling asleep myself. Not sure what time Parker finally fell asleep, but it was sometime after 9:15.
This is how it went EVERY night.
Now on to the lessons.
It was a great week filled with lots of positive things. There is not one big result from it - we didn't leave with him being able to sit up or roll over or talk. BUT, he is definitely making improvements. He was so incredibly vocal when we were there. He actually said "again" two times, just clear as day. I about cried. He also started relaxing his normally rigid muscles. One morning he woke up and actually picked his foot up and crossed his other leg with it (like how a man might cross his legs.) I have never seen him do that. Usually both legs are straight and stiff.
Parker loved his therapists. We saw Sylvia who is just this amazing woman who's soul is as strong as her accent. Parker thought she was so great. He really liked it when she sang to him and made up new words to "Wheels on the Bus". We also saw another therapist, Chris, who was great. And then of course we saw Anat, the creator of this technique. Unfortunately, we saw her on the afternoon of the first day there. So Parker was pretty burnt out from travel and had not napped in 3 days. She (and all ABM practitioners) are very sensitive to the needs of the child, so she didn't want to push him and work with him for too long. Please keep in mind...we paid $500 for that hour. In my mind I was willing Parker to just cooperate and keep working. She did work with him for a little bit, but he started to get fussy. So of course she asked him if he was hungry and he signed "yes." Super. Now she is looking throughout their building for something to feed him. She tried guacamole - nope. Then she found some apple sauce. Yes - he liked that. So we fed him some of that while she talked to us. Then she said, "he is done." My mom and I exchanged looks like "WHAT?" I told Parker that that was the most expensive snack he has ever had. Luckily we did get to see her later that week and it was great!
The hard part is realizing that we need to continue to go down to California for the treatments at a more regular pace. Anat recommended that we come down every 6 weeks. This is so difficult because not only is it expensive, but Jimmy and I both work full time. It is not easy to take a week off every 6 weeks even if it is for medical reasons.
|Chillin' after a long day. Look at those relaxed legs!|
|Breakfast by the pool|
These sweet little animals came to visit us outside of our hotel window almost every day. There were 3 adults and 2 babies. So sweet!
I also realized that one of my best friends in the world lives right here in San Rafael. I didn't even know it! She hosted us for a wonderful evening on her deck with an ice cold drink and a home-cooked meal. It was wonderful!!
One day we decided to take in Muir Woods National Park. It was breathtaking...until Parker had a complete meltdown. Not sure what happened but he was inconsolable. I thought we were going to be asked to leave, so we just decided to leave on our own. I carried him out, crying the whole way (him not me), while people stared at us like we were kidnapping him. Sorry we spoiled the tranquility folks. Have you never seen a crying child????
Parker may have not been a big fan of the woods, but he LOVED the pool. One evening we found this pink floatie and he was kicking his legs and loving it. He didn't want to get out. Unfortunately, all good things have to come to an end, and we did get out, pruned hands and all.
I am not sure how we will manage this therapy in the future. It is so overwhelming to think of what he really needs. But I have decided that we need to commit to this for at least a while to see what kind of results Parker can get. We are heading out tomorrow for our 2nd trip down there. Jimmy will be coming this time and we are bringing Brady as well. It is going to be great!