Monday, October 10, 2011

Autumn Rolls In!

I am amazed at the things good people can do. September was quite an eventful month... and I definitively learned that it does pay to be good. Bad things happen and we all wonder why, but even more good things happen at the same time... It's just that the good things are left unspoken, and only the bad things get voiced. This is so wrong! I was so sad and shocked that my van was stolen, but then someone comes in and gives us something better and more useful. I am happy that now I can have more choices in where to go as I have a secure transport and secure accessibility and safety. I have not been able to go on a first trip yet, as my parents have been handling the paperwork for the van's plates and insurance. Still, I know it is a matter of days for me to have that first trip in my new van! I can bet my first trip will have something to do with visiting either the Museum or the Zoo. And then I hope we can make the trip to visit Mr. Bussani and Mr.Zarba (my new friends from Bussani Mobility who donated the van)!

It's been exciting. Mommy has been taking care of all my affairs, making phone calls and setting words into actions. I need a new headrest and collar so my wheelchair is actually safe (gosh, I feel I sound like a broken record whenever I mention that... Yes people, the headrest and the collar is a still going issue). At least now both are in process. CMC Seating & Homecare is in charge of that, and they promised to flag these as urgent. Hopefully we'll have better luck now! This time I should get a Savant Headrest and a Headmaster Collar. I expect them to be my right fit. I know that with the Savant headrest I will have my head completely secured when traveling in the van (which definitively makes me happier). Also, a stroller is in works as well by the same company. My PT has pointed out the importance of a stroller as a backup for the wheelchair (in case it gets damaged) as well as since the wheelchair cannot go into just any terrain. I am aiming for a EasyS stroller. Fingers crossed on that matter.

Besides these items, I should be getting power chair evaluation and trials very soon. Mommy contacted vendors from Permobile and Invacare. The tech guy from CMC said he'll contact them as well to see if things could speed up. Since I have an appointment to see my medical team at the SMA Clinic in mid November, mommy contacted the Permobile guy and he will be available that day at the clinic to do my evaluation. I'm happy the first step towards real mobility and freedom has finally been scheduled! I mean, let's face it, for me time is the most precious of things and I was supposed to have a trial for power wheelchair last year! I've heard so many excuses about it! I will go on from a blank page so I only have positive things to discuss. Mommy's new motto is: “No complaining, just take action”.

I am a bit disappointed at my overall services. Now from my two nursing agencies I am down to one only. The good news is that at least now they do have another nurse besides my Teddy (Masheila). So now it is all about my Teddy and new Marie. Still, I miss my Russian connection and my crazy Texan a lot. What can I say, you are responsible for what you domesticate (said The Little Prince). I have heard so much about the area where I live being dangerous at night, and about how some people are not comfortable with my daily care. I understand so much more than people credit me for... Yes, the area is dangerous and Mommy is very unnerved by it... but we all just have to hold on and believe things will get better. We won't live here forever. Somehow, someday, we will go move to a safe house with a small backyard with roses and sunflowers... And who knows, maybe I'll be able to have a small butterfly house and we will all be able to bring mommy's cats to live with us (Mommy has 8 cats back at home in Puerto Rico, and she misses them so much)!

And about my daily care... (Sight) When will people understand that I am alive thanks to that care that they dread? It was not something mommy and daddy made up, it is something Dr. Bach created, put to practice, and it is something that works for me. I follow NIV, non-invasive care using bipap ventilator. It has its perks and its hindrances, but it is all following doctors orders. If something endangered me, Mommy and Daddy would not approve of it. I know some things are scary for whoever does not understand all the processes, but I am not scared of it. It saved my life 4 years ago. It continues to help me be healthy. And when I an sick, NIV is difficult but it works in time... with patience and diligence. My care seems easy at first glance, and I seem to be so strong and well... but I am fragile and in order for me to thrive in life I do have to go through my routines in sickness and in health, no exceptions.

I am deeply sad that I give my heart to all who get to know me, and then it gets broken each time someone departs reason or no reason. It all makes me tougher, and wiser... It all makes me appreciate those that love me so much even more! I constantly see people coming and going... I wish I had friends coming here to see me and talk to me and joke with me just because they felt like it. But... I understand. I love. With time you just learn to smile when you look at the stars because in a far away planet you know there is someone that you domesticated... hidden, far away... but there. And I know that if I feel that way, they must feel the same way about me... They must smile when they think of me. See? I understand much more than people think.

October arrived, and I'm so excited at everything my teacher, Mr. Farina, has been completing with me! Love these projects. I love dissecting the sunflower, writing my name with beans, the countdown for Halloween, the pumpkin project, the monthly calendar (of course)... We have been quite busy! I can't complain from my school time. My PT and my SLP are excellent. I just hope that they get to finally send an OT so I can get to complete more of my goals. I had also heard at the end of Summer that I was going to do some Skyping with the school, video-conferencing with the kids at the PK classroom over there... I was quite hopeful for that. I don't know why that tech project has not begun if all was setup. Ah, public services and their hicups! I still keep my hopes up. Mommy has never let me down, and I know she'll make things happen like magic. She's a witch, you know?

I completed two more projects of my own. I created a razzle-dazzle sequin under the sea seascape complete with glitter and some googly eyes. I also completed a bat to hang from my bed. I guess the legacy from the Camp at the Museum is that now I am more crafty!

I also got my last vaccine shots... Dr. V says my next vaccines should be when I turn 11. I also got my flu shots. Dr.V is not too convinced I'll get the Synagis shot, but they are waiting on insurance to see what happens. I have a dentist appointment next week. I gotta try to make all visits before our complete outings shutdown (when cold weather comes in and snow stops us until Spring). Sinus pressure is beginning... as usual. I just hope Autumn stays a bit longer, not just two more weeks!

So... That's all folks! I had action, drama, suspense... Many things running, many things to do, much love to keep giving. Life is a constant gift, a constant miracle. God is definitively the Master Artist!

1 comment:

Sarah said...

DeeDee -
I think you are such a wonderful little girl. I admire your family's courage, strength, and dedication. I was heartbroken to read that your van was stolen, and then I rejoiced when I read that some wonderful, beautiful people were able to get you a new one. I pray for you every day and I know that God is doing something wonderful in your life. Thank you for sharing your story with us - I enjoy reading it. Please know that I keep you and your family in my heart. I hope that the future brings you new opportunities, new excitement, and new amazement.

A fan in Wisconsin,