The non profit of the week is.....

1p36dsa

1p36dsa.blogspot.com

1p36dsa.org

1p36 Deletion Support & Awareness is in the running for a $50,000 grant to insure that all children with 1p36 Deletion Syndrome get diagnosed and we need your help. Diagnosis means information and support for families, caregivers, medical providers and educators to help improve the lives of those with 1p36 Deletion Syndrome. Helping is simple, just vote three ways every day for 1p36 DSA! (click on blogspot link above for voting instructions)

As some of you know 1p36 deletion syndrome is very close to my heart.  My son was diagnosed with 1p when he was 3 weeks old. It only made sense that this would be my first featured non profit.

My family has struggled for years to find the right help for Josh.  We have moved from Maryland to Pennsylvania.  Pennsylvania to Florida, and from Florida to North Carolina.  All of these moves have been for Josh.  We have depleted our bank account, sold our homes, left our family and friends, and have separated,  just to give our child a fighting chance.

Josh will never be like the "typical person".  However, he does deserve to reach his fullest potential. Whatever that may be.  I could go on and on over the rejections that Josh has endured in his 8 years.  It is overwhelming to have doctors, therapists, school, and clinics turn him away.  There is not enough information about 1p out there, and because of this children like Josh suffer.  I am speaking about our own experiences.  We have gone to the extreme with moving so much.  I am still wanting to move one last time, but as I stated before I have depleted my bank account, so for now we are stuck.

Some of the medical battles that my child faces are: epilepsy, scoliosis, kyphosis,nystagmys, strabismus,hypotonia,global developmental delay, and behavior issues.  He is non ambulatory and non verbal.  We fight because Josh is a smart little boy.  With the right tools he should be able to communicate.  He may never talk, but he should still be given the tools for signing or a communication device.  He is very close to walking, but because he has behavior issues many therapists do not want to deal with him, so they decline therapy. Again, these are just a few things we go through.

We have met many wonderful people along the way.  Our experiences haven't always been negative.  However, I want good doctors, good therapists, and a good school for my child.  I don't feel like I am asking for to much to find all of that in one area.   I believe because we have moved so much I have had the opportunity to know what I want for him.  I have seen it.  Th worst decision I have made was to move out of South Florida.  He did have a great school and therapy center there.  I had friends, and we had families there that loved Josh.  This time why we moved had nothing to do with Josh.  I won't go into that

My point with this story is knowledge is power.  If there was more information about 1p out there doctors, therapists, and schools would know better how to care for a child like mine.  Be sure to click on the links to find out more information about 1p36 deletion syndrome.

Thank you for letting me share a small part of our story with you.

Saturday's Question...

What would you do to better your life?

This is a difficult one.  I am on this path right now.  As I stated  before I am a single mom.  This is new to me. I am starting over.  I need to learn how to take care of myself and my son.(financially that is)  I also need to be happy doing it.  If I am not happy Josh won't be either.  He deserves a happy mom.  He deserves me at my best. 

I had been in serious relationships since I was 14 years old.  When I was 24 I found myself alone.  I realized during this time that I didn't know who I was.  I wasn't even sure what kind of music I liked.  I had allowed these relationships to take over my life.  I decided I wanted to know myself.  I wanted to know who I was as a singular person and not as a couple.  In October 1998 I decided to swear of men. I wouldn't even casually date.  This lasted for 2 years.

It was one of the best times of my life.  I was introduced to myself for the first time.  I learned what kind of music I liked.  I also got to figure out what I wanted to do for me.  I had a good job.  I started back to school.  I enjoyed hanging out with my friends. I loved my life.  Most importantly I loved myself.

When the time came I met someone new, and we had a nice relationship for several months.  I was strong and I didn't need him to define me, so when things felt wrong to me I was okay with being on my own again.  This was a huge step for me.  Before I would hold on to relationships that weren't working, because I was scared to be alone.  I discovered a new strength I never knew I had.

Now, back to the present.  I have to redefine myself with my child.  It isn't as easy as I thought it would be.  Josh has doctor and therapy appointments almost weekly.  I can't find a daycare that will take him after school.  To be honest even if I could I'm not sure if I would send him anyway.  I don't have anything against after school care, but my son is nonverbal.  He can't tell me if something has happened.  I have walked in on a few situations that disturbed me in  the past.  Needless to say, it is hard for me to trust completely when it comes to my son.  I do know the path I want to be on.  I just need to figure out how to do it and where. 

So how would you or have you bettered your life?

 

Friday's Question.....

Have you ever had something that triggers a specific memory or feeling?

It could be a scent or a song.  It could be anything.  Just something that takes you back.

I have a few.  Sometimes in the morning Josh will wake up.  He will still be so tired that he will have one eye shut and the other squinted.  It makes me remember the day he was born. The first time I saw his precious little face that was what he was doing. He took my breath away.  I was speechless, and for me that's rare.  It was that moment of realizing that who you were before didn't matter anymore.  Now you had something so much better to look forward to.

The reason for the question:  Last night a friend posted a video of Eric Clapton's Wonderful Tonight.  That song and Sweet Child O' Mine by Guns N' Roses always takes me back to the moment that I fell in love for the first time.  There is nothing quite like your first love.  Although, the memory of that person can fade over the years that feeling can be brought back by a guitar rip. You can be in the present one moment and in past the next.  It always congers up memories of a piggyback ride through Antietam Battlefield.  That was the place that I realized that I was in love for the very first time.  It is amazing how the mind works. 

Thursday's Question

Have you ever done something so absentminded that it made you laugh? However, if a stranger did it it would irritate you?

I had one of those moments today.  I was at the grocery store and the cashier gave me my total.  I was standing there for more than a minute waiting for my receipt.  I was thinking man this is taking forever. I then realized I hadn't paid her yet.  I laughed and said "oh, I guess you need some money."  As I was swiping my card the man behind me was tapping his foot loudly.  I just turned and smiled.  I couldn't help but laugh, which annoyed him even more. 

Wednesday's Question....

What is the first thing you remember wanting to be when you were little?

I had so many ideas about what I wanted to be when I grew up.  One day I was flipping through the channels looking for an answer. Yes, I was looking for an answer to my life on the thing that they say rots your brain.  Only me.  Anyway, I came across a program that had an author promoting his new book.  He said " Are you searching for your purpose in life"  Well, that stopped me in my tracks.

He said that the first thing you said you wanted to be in your life is what you were sent here to be.  I asked my mom if she could remember the first thing I wanted to be.  She said I always wanted to be a wife and a mom.  She had tears in her eyes, because I was told at 17 that I had maybe a year left to get pregnant.  I went through some complicated female stuff that year.  We won't go into that.  When I was 20 I got pregnant, but I miscarried  I really thought that it would never happen. Luckily, I was blessed at 27 with my miracle baby. The reason for this question is that I am a bit curious to if this author had a point.  So what did you want to be?



Today's question.......

This is my son at his school in FL.  A wonderful school called Abi's Place.

Today's question is ........

If you could do something to help other people what would it be?

As I stated yesterday, I would start a non profit school for children with special needs.  I know the impact such an amazing school can have on these kiddos.  As a parent I actually fantasize about an amazing school for my son and others.  I know what I want it to look like.  I know what services I want to offer.  I know what I want it to mean to other families in the same situation.  This is my dream of how I can help others.  Now it is your turn.

What Should I Blog About???????????????

I started this blog in an attempt to educate the world wide web users about saving money, stay at home jobs, etc.  As I began my research I realized everyone does that.  I also think it's a little boring.  I always have so many ideas in my head about what I want to do.  I want to start a non profit school for children with special needs.  I would like to start blog selling my wonderful crafts.  Hahaha.  The joke there is I can't sew. I have tried making jewelry and lets just say that didn't work out to well.  I have no artistic abilities. Well, maybe I should blog about cooking.  Oh, that's right I can't cook.  I love to write, but I want this blog to appeal to many different types of people.

Haven't you ever wanted to do something that would have a lasting impact?  That is who I am.  Let me give you a little back ground on me.  I was never a great student.   I was more worried about social activities instead of studies.  When our parents said good grades were important man they weren't lying.  I finally got my stuff together at 26 and went back to college.  In the beginning of my 3rd semester I found out that I was pregnant.  I started having complications with my pregnancy and dropped out.  I had every intention of going back. (That's what they all say, right)  However,when my son was born he was diagnosed with 1p36 deletion syndrome. (I'll come back to that a bit later)  Needless to say, my life was turned upside down.  I have been a stay at home mom ever since. I did have a small hiatus when my son Josh was in 1st grade.  I had the opportunity to work for his school.  A non profit school for children with special needs.  I was the community relations person. In other words I asked the community for money.  I did okay, but I had alot to learn.  He only had the opportunity to attend the school for a year, but I knew I wanted a school like that for Josh.  In the past year we have moved to a different state, my son's father and I have separated, and I can't find a job to work around my hectic schedule. I am just trying to figure out what the hell to do with my life.

I am starting over at the age of 35.  I will figure it out.  I am a single mom of a child with special needs.  It is all up hill.  I have always been a climber and I can't wait to see what is on the other side of the mountain.  I am just wondering how long it will take to see the view.  Cheesy, huh.