Thursday, May 16, 2013

Rich Manhattan Moms Walk A Day In My Shoes

I am a special needs mom and I am responding to the article in the NY Post.

Dear Rich Entitled Manhattan Moms,

You want to pretend to be a Special Needs mom for the day so that your little darlings don't have to stand in line at Disney World.  You poor poor thing, it must be so hard to have to stand in line for any longer than 5 minutes, it must be so hard to have to discipline your children for more than five minutes while waiting in line, oh and what about the heat and the sun, we wouldn't want you or your offspring to break a sweat or heaven forbid get a sunburn, I am so sorry you have such a hard life, it truly must be so hard to be you.
If you want that "Special Pass" at Disney I truly believe you should have one, but first there a few requirements I think you should have to complete before you are awarded the "Golden Ticket" as you seem to think it is.
I want you to walk in my shoes, I want you to see what it is like to give birth to a baby, a baby you have wanted for so long, and have them tell you that she has Down Syndrome and if that isn't bad enough she needs open heart surgery before she is 3 months old or she will die.  I want you to know what it's like to have to drive your baby to the hospital knowing they will cut open her chest and operate on her heart.  Sit by her bedside night after night with no sleep praying to any and every God to help your sweet precious baby. You are probably thinking clearly that is enough to earn the ticket, well nope I am sorry you are not quite there yet.  You will also be required to visit numerous specialists with your child, for example you will have to bring your child to the cardiologist once a week for a few months, sometimes twice a week, then you will graduate to every two weeks, then once a month, then every 3 months, then every 6 months then finally you will only have to go once a year, and that's only the cardiologist, there are endocrinologists, pediatricians, Ophthalmologists, Neurologists, just to name a few.
Wait not so fast there is a lot more, you will have to fight with insurance companies and doctors and anyone else who is not being fair to your child.  You will have to be your child's advocate.  You will have to always be there, can you do that, can you cancel your fabulous lunch dates, your yoga classes, your shopping sprees, your spa dates.  You will be lucky if you have a haircut once a year, so embrace the pony tail it will be your new friend. There will be no time for what you want or need, it is all about your child.  So I am sorry but you just might go grey or look unkempt.
I hope you are okay with being stared at because this happens a lot, people will stare at you  and your baby, not because they are thinking wow she looks awesome for 36, no it's because either they feel sorry for you, for your child or they are thankful that they are not you, maybe who knows why they are staring but they do and they do it a lot.  Oh there are also the rude comments, you may need to toughen up for this, hope you are able to let things roll off your back because people can be really mean and hurtful.
Oh we are not done yet, get cozy because there is more.  I sure hope you had your Wheaties today because now you have to deal with helping your child do all the things that "normal" children do with ease each and every day.  Now you have to have all of her therapist appointments, there is Speech because she is almost 2 and still doesn't talk,  then off you go to the Physical Therapist because she's 2 and she still isn't walking.  Occupational therapy is going to help her too because she is 2 and still can't feed herself.  In between therapies you will do everything all of those therapists have suggested everyday because you are hoping and praying that by the time she is 3 maybe she will do all of these things.  Maybe she will walk, feed herself, and say I love you Mom by the time she is 36 months old.
Getting tired, well there is also cooking, cleaning, driving your other children back and forth from school and activities, helping with homework, grocery shopping, Dr appointments, being a good wife, dinner time, bath time, bed time, laundry, etc. Then you get to go to sleep and get up and do it all over again.
Now pay attention, this is the most important part.  You are going to worry ALOT, because your child is prone to getting multiple illnesses, and the thought of your child going through anymore hardships is heart breaking.You will never want to send her to school because kids can be cruel and the thought of anyone making her feel bad about herself numbs you.
Okay so here is the really important part, I really hope you have been paying attention.  You are going to know true love, you are going to know how to love unconditionally, she is going to teach you things that you never knew about life, about love, about what is important.  As soon as you have that feeling, then you may have your special disney pass.  Maybe after spending a day in my shoes or any special needs parent's shoes, you will look differently about what you are doing.  Maybe you will be so thankful and happy maybe you will realize how truly lucky you are to have a healthy child.
Yours Truly,
The Mom of a Special Needs Child