A Happy Thanksgiving

Happy Belated Thanksgiving!

Again this year we went camping for Thanksgiving. This is our 7th year camping over Thanksgiving. We go with about 6 other families, these are our best friends. We have a fantastic time.

Normally when we go camping we do not take Joey with us. He doesn't like it much and it doesn't give us time to relax. Joey is like a 6 month old baby. He has to be on a schedule, diapers changed often and fed every few hours. However we do take him every Thanksgiving. He was actually much better this Thanksgiving compared to the last 3 years since his accident.

The holidays are still hard for me. As time goes by it gets easier, but it still stings. It is hard to see the other little boys his age running and playing. It is hard to see these little boys riding their bikes and climbing trees and watching their favorite movies or playing games with the other kids. It is hard to hear the other parents talk about how their lives are going to get easier as their kids get older and they don't have to chase after them or watch them as much or make their food for them, etc. etc. etc. It is hard knowing that as their kids get older and become more independent that I will ALWAYS have that child that will depend on me 100% for EVERYTHING.

So then I start dreaming about what life would be like to be one of those moms, to see her child playing and riding their bikes, BUT I quickly shake it out of my head and begin to think about what I can do for Joey. I want Joey to be able to take a bike ride. The bike to do that costs $4500. Ok, then what about a bike trailer to take him on a ride, $800. Then my mind starts thinking about the therapies that I would like to do with Joey, more Stem Cell Therapy $30,000 and Neuro Therapy $8000. Maybe even more ABM, $1500. Then of course I start thinking about the things I would like to get for Joey, a new feeding chair (he has outgrown his current one) $600, a talker (not sure what these cost) and so many other adaptive toys.

So by this point my mind is going crazy with everything involving Joey, (school, daycare, therapy, adaptive toys and many many more things). So I have decided that today is the last time I am going to think about all this until after the Holidays when I have more time to be rational about it all.

So Happy Belated Thanksgiving to everyone. Hope you all had a great time. Be safe over the Holidays.

Blessings Always.

Normal

I have thought all day about what to title this blog post. I have even thought about how to start and what exactly to say. I finally figured it out.

NORMAL

WHAT IS NORMAL? Who is living a normal life?

I am living a NORMAL life.

For the last 3 1/2 years since Joey's accident, I have constantly said "I wish my life was normal". Well after this weekend I realized my life is normal. This last Friday I got on a plane with Jill and Peggy. Jill is mom to Seth who had his near-drowning 8yrs ago. Peggy is Jill's mommy. We flew to Seattle, WA to meet up with and spend the weekend with 9 other mommies who have children that have had a near-drowning accident. 12 of us total.

Over the last 3 1/2 yrs even though I have talked to many different mommies through email or more recently through facebook, you still feel most days that you are alone on your journey. I have always called it a journey because I have never felt like it was a normal life to live. WELL, this weekend changed me a lot. For the first time ever in the last 3 1/2 yrs I have felt normal. I sat in this HUGE house with 11 other mommies and we laughed and laughed and laughed and cried, then laughed some more. We talked about our lives, our feelings, our struggles and our happy times, we prayed and sang and cheered, we held each other and just sat and listened. Even though all our kids are at different levels of healing and different levels of disability and all our stories of how we got here are somewhat different, we all felt the same. We all have experienced the same emotions. No one judged the other. You never had to explain your life. We all understood. We all were on the same path, the same journey, the same NORMAL. Being with all these mommies I realized that we lived normal lives. Normal because we have all been were the other has been. Normal because it was comfortable. Normal because we all understood each other. Having the 12 of us women in the same room made my life NORMAL.

I want to send out a few special thank yous; Thank you to Sue S. who organized and planned our whole weekend and Thank you to Tiffany V. for letting us stay at her house. Also Thank you to Amy S.(Sue's daughter) and Yoli (Sue's Best Friend) for cooking and cleaning for us all weekend. And Thank you to all of Sue's friends who volunteered their time and donated monies to make our retreat all it was.

I will miss you all, but will see you next year (hopefully). This weekend really changed me more then I ever imagined. Thank You Mommies. I LOVE YOU!

Jessica's Bat Mitzvah

This Saturday my oldest turned 13 yrs old. She had her BAt Mitzvah. She did a fabulous job with her service in the morning and then partied like a rock star that evening. Her are some pictures.

Joey and Jessica

The decorated room. Well half of i.

Me, Jessica and her friends. I'm the cute blonde in the middle. J/K Ok so that cute blonde is Jessica.

How Much Does Joey Understand?

This is the BIG question. How much does Joey understand? I know I have talked about this before, but many of the days we forget.

Everyday Joey does things (very small small things) that show us he understands what we ask of him. These things are so small, yet very consistent that sometimes we question ourselves about how much he really understands. Then every once in awhile he really impresses us with something new or something BIG.

He did this yesterday. When I went to pick him up from school, the teacher had a talker in her hand. She said to me, "Joey has something he would like to say to you." The teacher puts the talker in front of Joey and says to Joey, "go ahead tell her". He then lifted his arm and hit the button. The talker said, "Hello Mommy". He was so proud of himself that he started laughing and then kept hitting the button. Some of you might say "SO, he hit a button". Well normally he would not reach out and touch a button unless you said, "Joey can you reach, reach and touch the button, come on Joey reach, touch". I brought tears to my eyes, reminding me that Joey is there and does have things to say.

Well that was just the start of him impressing me. During his behavioral therapy he impressed me more. We had him in his gait trainer. We are trying to encourage him to walk, but not just walk, walk on command. So at first when we put him in he would take a couple steps. We would reward him with a bit of pudding. Then we started to ask him to take a certain amount of steps (ie. 2 or 4). He would then take the asked amount of steps and stop, then open his mouth and say "UMMMMM", for more pudding. We did this numerous times. Then we decided to step it up a bit. We said if he could walk all the way across the room then he could be done walking and could finish his pudding. So what did he do, he turned his walker around and moved his feet as fast as he could all the way across the room. He reached the end and again stopped, opened his mouth and said "UMMMMM".

I think he likes to keep me on my toes. He wants me to think that he doesn't know much and then BAM! Just reminding me that he is a typical 5yr old inside that brain of his.

I Love You my little man.

New Normal

I am sitting here tonight watching the 33 miners being rescued and boy does it bring many emotions.

When the miners first got trapped and for the first week or so we all sat and watched. We prayed for them and their families. Then we moved on. We somewhat forgot about them because we had our own lives to live. Many of us probably didn't even think what happened to them. Possibly just assumed they were rescued or maybe forgot about them all together. I was one of those people. I forgot about them. Didn't even cross my mind. I moved on with my own life with my own tragedies.

I remember when Joey had his accident. That first day and even that first month everyone was around. It seemed to me that every ones lives around me stopped too. As the second month passed, then the third and fourth, then the first year went by I noticed others around me moved on with their lives. I didn't understand. Why did their lives move on the same way, but mine didn't. Inside I was soooooo mad at everyone. Mad that they got to continue their lives the way they were before my sons accident and my life was still at a stand still. WHY??????

Well I see now. It has been almost four years since Joey's accident. Yeah I know, FOUR YEARS have gone by. My life has found a new normal. It took about 2 years for me to finally move on in life. It was a very painful 2 yrs and most of the time I felt alone. There seemed to be only a small group of mothers who went on the same journey with me who understood.

Today as I sit here and watch the miners being rescued, I watched them hug their families and feel so relieved. Relieved that they get to find a new normal in their lives. AND it makes me feel angry with myself that I was one of those people that moved on with my life at the beginning. Makes me angry that I was mad and upset at the people around me 4 yrs ago that moved on with my life.

BUT today I understand and I am sorry. I'm sorry I don't stop more often and think about others. I am sorry to those that always supported me, sorry to myself for how I felt.

I pray all the miners make it out safe and I pray that it doesn't take to long to find their new normal.

The GOING On's.

Where do I begin without repeating myself too much, ummmmmmmmmmmm?

It has been 5 weeks since school has started for Joey. The first week was rough, new teacher, new aid, new classroom, but now 5 weeks into school Joey is doing great. I had a meeting with Joey's teacher this last week to make sure he was getting what he needed in school. I showed the teacher his ipad, which they are going to start to use. The teacher is also going to ask the school district to get one for Joey in class. He is making a lot of friends and having a great time. He also went on his first field trip. He went to the fair and he took his first bus ride.

Joey also started a new therapy clinic. His therapist is great. After 6 weeks of working with him, she has got it down. His ability to sit with no support is progressing nicely. He sits for an average of 2.5-3 minutes when you just sit him with no stretching or prompts, however when he is stretched and prepared, he can sit any where from 7, 10, 14, to 18 minutes. At therapy last week he sat on a platform swing for 3.5 minutes without falling over. The swing was moving the whole time. He is also starting to really bare weight through his upper arms and elbows. He is talking a lot, no real words besides 'I go', but you can ask him a question and he will babble away. He really loves his music, he wants it playing all the time, he will get fussy if it is not on.

Besides the PT he receives at the new clinic and the therapy he gets at school and behavioral therapy at home he is not receiving any other types of therapy right now. We are taking a break for traveling everywhere. It has been good for the whole family.

As for the rest of us; Jack has been playing football and Jessica cheerleading. Jessica has also been studying really hard for her Bat Mitzvah in two weeks. Both kids have been doing really great in school. Jeremy is working hard and I am finally getting time to do stuff without the kids.

I have posted some pictures and video's here, but will also post more on the following website; www.dropshots.com/fightingjoey

De-Stressing! Or Trying at Least.

De-stressing!!! WHAT, really, what was I thinking.

School has started and we are 1 1/2 weeks into in. Joey is doing great. They are still getting use to him and he is still getting use to them, but things are going good. Next week I plan on visiting and talking to his therapist and the teacher about the amount of time he is in his wheelchair. I think they have him in it to much. That WILL change.

Joey has started a new therapy clinic this week. It is just physical therapy. He has a new therapist. I know it will take a few weeks to get use to each other, but I'm inpatient and can't wait. He will go 2x a week for an hour. We are no longer going to the NAPA Center on a regular bases because of school and the drive. I already miss that place. It makes me nervous that Joey will regress not going to therapist that know what he needs. I am going to try and take him there on days off of school and he will also continue doing intensive therapy there when we can.

I told myself that I was going to give myself and Joey a break on doing extra therapies. I thought that by giving us a break that it would give me a chance to de-stress a little and relax. WRONG! All I can think about is what other therapies I should put Joey in. What therapies does he need to help him? My mind is nervous that by taking a break Joey will regress. I continuously say to myself, "As long as he doesn't regress I will be happy", however it is so hard to keep convincing myself of that. So in turn, I am not de-stressing, I think I have only made it worse. With that being said, I am looking into Occupational therapy and massage therapy for Joey.

Another thing I struggle with is his progress and other kids progress. I know and boy do I know that ALL kids are different. I also know that I should be happy that Joey can do this or that because other kids can't, but deep down inside I'm not 100% happy. I want Joey do be able to see and track. I want him to be able to reach out and use his arms to read and play games on his ipad and feed himself and point to things and so on and so on. I just want the best quality of life for him.

OK, I'm done being depressed. I just had to get it out.

Now on to the things Joey CAN do. He can sit for an average of 3.5 minutes, but has sat for 10-18 minutes over a dozen times. He still eats like a horse and he walks great in his gait trainer. His eyesight has improved dramatically. I am going to take him to the Center for the Partial Blind to get therapy for his vision. Oh and not to forget, but Joey has the best smiles and the best laughs.