To Natalie, Tommy and every other Special Needs Parent out there

Here's To You:
For becoming educated and learning just what your child needs. Then MAKING sure they get it!
For the many hours spent getting the necessary therapy your child needs.
For being your child's voice, so that they can be heard.
For being the BEST parents that a child can have.
For the late nights and endless hours scouring the internet for information, products and treatments.
For having the guts to try an alternative therapy and coming up with the money to do it when it is not covered by insurance.
For carrying your 40 pound child around even though your back is aching.
For constantly wiping the drool from your childs chin, so to keep it from getting chapped.
For ALWAYS putting your childs best interest first, even though you risk losing your job.
For the ability to make the right medical decisions.
For the dirty looks you receive when your child goes into sensory overload, or even when they just go to the playground.
For the never ending doctors appointments, and the armor you have to carry to get there.
For the equipment that IS necessary even if you have to fight the insurance for it.
For the humility and grace it takes to advocate for your child.
For feeling alone because no one really understands you.
For celebrating every accomplishment no matter how small.

Brody and Daddy

This was a gift for my son...the original photo was taken by Jess over at Boston Baby Photos she is a genious with the camera and if ever you need photos of your family, I highly suggest that you call her, the paintings were done by me of course :) I thought I would show what the process would look like mid way. I actually love the paintings best mid-way, it is my personal preference. Boston Baby Photos

Friends, sometimes I worry about the silliest things...

As a grandmother, I think a lot of my concerns about Hailey are valid...I worry about, who will take care of her when her parents are no longer here or able to, I worry about her being bullied because she is a perfect target for bullies, being non verbal and “different” than the rest of the kids, I worry about people taking advantage of her, I worry about how much she does or doesn’t eat, I worry about her quality of life being compromised and not being financially able to get her whatever it is that she needs, I worry about most of the things that every other parent/grandparent worries about, but am I being silly when I worry about her having and making friends that will be there for and with her through thick and thin? TRUE friendship is really hard to come by, and quite honestly if you have a few friends that you are really tight with, friends that have been with you for decades, then i think you should consider yourself blessed. I am very fortunate to have a couple of friends that I have known throughout the years, friends that I know that I can rely on no matter what, friends that I can call on and they too can call on me, and we would drop everything and anything for each other. I have a friend that I met in highschool and even though we are now miles apart (Chrissy) and don’t see each other as often as we should, when we get together it is as if we can still pick up where we left off. that is a friendship that everyone should have. I also have a unique friendship, my lifelong (and I mean all of my 46 years) friend Brenda. Brenda and I have seen each other through good times, and bad times, through births, weddings, funerals and sicknesses, we know each others deepest secrets, we know what’s wrong with each other, without having to say a word. This is a friendship that I do not take for granted, that I know that I am lucky to have. Take a secret inventory of your friends and see how many are this genuine. I am TRULY BLESSED to have Brenda in my life and I know it, I think we have a very rare kind of friendship. I thank God everyday that she is in my life! Hailey is only 5 years old, I’m sure she has plenty of time to make friends, but I worry. After all, how much time does she have to socialize, she has so many weekly therapies, countless medical appointments, feeding issues that make it much harder and longer for her to eat. etc. etc. Not to mention the lack of understanding of her disability that scares so many people away. Despite her beautiful and contagious smile, and charming personality, I think other parents are afraid to invite her over for a playdate Afraid that they won’t know how to take care of her. Keep in mind a play date doesn’t t always have to be a drop-off situation. A playdate can be two moms at the park with all of their children, or moms catching up and getting to know one another over tea while their children are playing together in another room. A play date can be as beneficial for a typically developing child as it is for a child who has a disability. It is imperative that children learn at a very young age that they are all equal despite the different challenges they face. I’ve said it before and I will say it again, “Hailey loves all the same things that another 5 year old child loves” She loves, to play, she just can’t run around, she loves to sing, you just can’t hear her voice, she loves to dance, she just needs a little help, she loves to blow bubbles, but she can’t blow, she can try effortlessly to catch them, and they inevidebly break, just like they break when any other 5 year old tries to catch them. One of her greatest needs is to be understood. If you can look past her disability and look right into her soul you would have a wonderful and fulfilling friendship! I saw this music wall on another blog I know Hailey would love it, I’m not sure that she can do it from this angle, she spends most of her time trolling around on the ground, (really got to get some knee pads to fit her) but maybe I can adjust it a bit, maybe hang all of this cool stuff on the back of a hollow door and bring it outside on the grass when she comes over to visit in the summer time, I think I will paint some of my utensils bright colors! I bet Brody will soon be able to play with it too. “To understand me is about taking the time to get to know me” copyright @-Janet Harrold