I am too old to be writing this letter even though sometimes I feel like a 12 year old trapped in a 40 year old’s body When you are a mom and especially a special needs mom (my 6 year old has Down Syndrome and my 12 year old has Tourette’s –oh and I homeschool them both) your wants and needs sometimes get put on the back burner, heck there are some days I am lucky I get a solid 5 hrs sleep and a shower. But that’s how it should be right and Christmas is for kids but this year Santa can I be a little selfish and ask for some things for myself and my husband.
Okay since I know this is just a silly letter and probably is never going to happen I guess I can just go crazy with it.
Well big guy that’s all I got and it’s a doozy. Even though I know this isn’t a reality it was still fun to dream for a bit.
Merry Christmas and Happy New Year
An Exhausted but Happy and Hopeful
Special Needs Mom
We are a Disney Family, we love all things Disney and when I say this I really mean it. We even moved to Central Florida just so we could be closer to Walt Disney World, okay there were a few more reasons, but it was one of the top 3. You can imagine my family’s excitement when we were chosen to host a Disney Preschool Playdate and partner with Disney and Mom Select. We were sent some wonderful products from Disney, American Tourister, Soft Soap, Pillow Pets, HP and Popsecret all to use at our party.
My wheels started spinning so of course what do you do when you need some Disney inspiration? You go right to the source of course. So off we went to Disney World to enjoy a day at Magic Kingdom where the magic truly is endless.
My daughter is 5 and has Down syndrome and my son who is 11 has Tourette’s Syndrome. When we go to Disney we escape all our hardships, all the medical things, all the everyday stresses and we just escape into the magic.
It’s the smell of the cotton candy lingering in the air, the sight of all the mickey balloons floating above, the sounds of laughter and music and the feeling of true magic that help us to feel like we have escaped even for just a few hours. We are a family at Disney, and nothing else in the world matters for that moment in time.
Leaving the park gave me the inspiration I needed to host a great party. I decided to stick with the Mickey theme because after all it did all start with a mouse. From the decorations, to the crafts, to the snacks, my inspiration was Mickey and his pals. My daughter absolutely adores Mickey Mouse Clubhouse on Disney Junior and my son loved it when he was her age.
I stuck with the classic Mickey colors of black, red and yellow. I used printables for invitations and signs from Frugal Coupon Living http://www.frugalcouponliving.com/20-free-disney-printables-crafts-coloring-creativity/and Catch My Party http://catchmyparty.com/blog/free-mickey-minnie-mouse-birthday-party-printables-from-printabelle/
We have lots of Disney friends and toys in our house so we used all the things we had along with all the things sent to us to create a magical Disney party. Instead of playing games at our party we actually went to Epcot later that evening to look for some hidden Mickey’s using the cards that were sent to us. We had so much fun. We had the hidden Mickey game a little easier for my daughter because she is special needs. She just had to look for Mickey anywhere she saw him and we filled in the Mickey head for her.
I want to thank Walt Disney World and Mom Select for providing My Hands and Heart are Full with this wonderful opportunity. It was so much fun. Disney is a part of our lives and always will be. It was fun to show everyone our #Disneyside and bring the magic home from the parks and throw a super fun Disney party. We love the Walt Disney World Resort where the magic is endless, especially for our family.
Check out a video of the party on my Youtube Channel. https://www.youtube.com/watch?v=HBTIQPT5nzQ
So today was just another ordinary day. My mom wasn’t feeling well and I told her I would pick up some medicine for her and I had to make a stop at Wal-Mart anyway. So off I went with Leah to Wal-Mart. While getting her out of the car and into one of those huge shopping carts with the seat in front of the cart (seriously the thing is the size of a minivan) Anyhoo, I was strapping her into the seat when I hear an older woman and what seemed to be her daughter talking. I hear her say the following “There are so many special needs kids around here!” “In my day we didn’t just parade them around like they were normal” WHAT THE $%^# DID YOU JUST SAY? Is what I wanted to say but I didn’t. I believe I took the higher road, the road less traveled. Anyway I said loudly enough for her to hear me. “C’mon Leah, let’s go parade around Wal-Mart.” Oh and she heard me because if looks could kill. I waved and said “Have a lovely day!”
Seriously though, what is wrong with people? Why on earth would you say something like that? Why would you say something like that loud enough that I can hear you? I am a special needs parent, that doesn’t mean I am deaf. I realize you have an opinion, I realize you want to share that opinion, but guess what NO ONE CARES!!!!!!!!!
I couldn’t wait for the day when I had a little girl and my own home to be able to decorate the most beautiful room for her. This past weekend my husband and I did just that. We chose the most beautiful mint green, cream and coral color scheme. We got lots of decorations that just pulled the room altogether.
We love her new room and so does she check out our tour on youtube.
To the Parents of the Alligator Attack at the Grand Floridian,
We have never met but my heart is breaking for you. I am the mom of 2 beautiful children, one who is special needs and underwent open heart surgery. We are big Disney fans, even moved here to be near Disney from NY. My husband and I are parents just like you, this could have been us or any other family on vacation with their little ones. I can’t imagine what you are feeling but as a mom I know you are probably blaming yourselves. You were on vacation in the most magical place on earth, you let your guard down as I have done and hundreds of thousands have done while you are on vacation. I feel like so many people will judge you, hell I even judged you when I first heard about it. My first thought was “where were his parents?”
The more I sat and thought about it and tried to put myself in your place, the more I realized that it could have been me, it could have been anyone. I am so sorry that this horrible thing happened to your beautiful little boy, I am so sorry that your family is suffering. I am so sorry that this happened in the most magical place on earth. You need to be strong for each other and your other children. Be strong and my thoughts and prayers are with you. I am so sorry that this happened to your family.
There are things you just don’t talk about as a mother of a child with Down Syndrome. There are things you just don’t say out loud. People think I am strong, people think I was chosen to be her mother, people think that I do a great job at being her mom. But there is a truth that no-one knows, an underlying layer that is waiting to be exposed into the cool air. But I can’t say it, I can’t show it, I can’t be vulnerable, I won’t be. There are things that you just don’t get, things that you just don’t know.
Most days are good, most days are great but there are days when I cry, I cry so hard it hurts to breathe, I cry until my eyes are red and swollen, I cry until there are no tears left to cry.
You wouldn’t know that I worry all the time. I don’t sleep most nights, because I lie awake worrying. Worrying about what is going to happen to her when I am gone. I worry about who she will become, will she have a job, will she meet a boy, will she fall in love, will she get married, will I ever have a conversation with her? These questions just race through my mind all night long.
You would never know that I continually doubt myself and everything I do. I should do this, I should have done that. It’s my fault she’s not doing x, y or z. If only I had done this. Maybe I should do this or try that. It is a constant battle in my mind.
You would never understand that I just need friends. Friends who can help me escape my world for just a bit, friends who can make me laugh and smile. I need friends who understand, I need friends who will call me or text me because the likelihood of me calling or texting is very slim although I do try. My time is consumed by all this special needs. It makes me so happy when my friends accept my daughter and treat her like a little girl because that is what she is.
You would never understand that I need to control the environment we are in or going to. Loud noises, a lot of people in a small space can and will scare my daughter.
You would never understand that I need my family, all of them, near and far. Most of them unfortunately have turned their backs on me since having my daughter which is very sad and heartbreaking. I need family more than ever now.
You would never know how much little things mean to me, the fact that my child has said a 2 or 3 word sentence is like she climbed Mt. Everest.
You will never know how much it hurts me when you ask if I will ever go back to work, or if I am going to “do something to make money” or when people tell me what other people are doing for a living. I loved teaching, I miss teaching but this is my job, it will always be my job.
You may never understand that I am never going to ask for help, ever. It isn’t me to begin with but it certainly isn’t who I am now.
You will never understand that I just want to feel normal, a normal mom, a normal family, I want to just live my life with my husband and wonderful kids and be happy.
Speaking of being happy, you will never understand the pure joy and happiness my little princess gives me everyday. She has a genuine happy personality, she doesn’t judge, she just loves unconditionally. She can make you smile ear to ear and make you laugh until you cry on most days. I am lucky to be a part of her life, lucky to be the one she calls mom. Though my life isn’t “normal” or perfect. I love each moment, the good and the bad and I wouldn’t have it any other way.
I can spread kindness, a smile, thoughtfulness, friendship like peanut butter on a cracker. But ya know what today I am all out of peanut butter, “Damn it!!” I am a great friend, the bestest friend you will ever have in your entire life. I am loyal, I am trustworthy, I am a great listener, I am thoughtful, I am all the things you dream of in a friend. You know when you sit down and think to yourself, I wish I had a friend who thought of me on my birthday, on holidays, who would run over if I needed anything, be a shoulder to cry on, a listening ear, someone to laugh with, hang out with, be goofy with, you name it. Where is that kind of friend? Well I am your girl!!! Only most people seem to overlook all of my friendliest friend qualities and not even give me a chance.
I should have told you, that before I can be your BFF you have to earn my trust, sorry it’s just the way I am, been hurt too many times by too many people. I at first will come across as shy, most people think that I am a bitch, but really that isn’t the case, well sometimes maybe, but for good reason. If you engage me and talk to me and if I don’t feel like I am being judged, that’s it you’ve cracked the code. I will talk until your ear falls off, I will listen.
I only wish I could get passed the bitch part ya know? I think that I suffer with wanting people to like me and accept me syndrome. I always give people the benefit of the doubt and accept them but never seem to get the same in return. So back to my peanut butter analogy back there. I am all out. I am all out of being the friend everyone wants, the friend everyone deserves. It seems like I only hear from certain friends when they want or need something.
With Facebook I am able to see everyone writing about their friends, their bff’s, their bae’s?????? What the hell is a bae, by the way???? I haven’t a clue. I have kept a friend I have had since kindergarten who now I only get to see once a year which is sad but I am thankful that I have her even if it is every 365 days. I have a cousin who I consider my friend. I have met some great friends here in Florida, lifetime friends I believe. But because I have been hurt so many times by people I have a hard time really connecting with and trusting people, but I am working on it.
This friend stuff was hard when I was a kid but it is even harder now. But I am happy to say that I have learned to let my guard down and I have made some of the best friends I have ever had, here in sunshiny Florida.
To the lady who fat shamed me on vacation with my husband and my children. You are UGLY. Now when I say UGLY, I don’ t mean ugly like you would mean ugly. I mean UGLY on the inside. You are a mean, horrible, ugly person on the inside, which I believe is much worse than being ugly on the outside. So you might want to go on a spiritual kind of diet, learn to be kind, learn to be happy with yourself, learn not to judge people.
1. PLAN BETTER
2. Death of Princess Dianna
3. Baby Jessica in the well
4. The Challenger Explosion
5. Sandy Hook