The Eyes That Stare....Stare......STARE.

   How do you react to the stares? The looks? The eyeballs piercing your very heart? Recently, I have had several occasions where I have been undone...almost to tears in public places.

      Example ONE: I remember, our last hospitalization, Boo and I were taking a walk. This was not an easy task mind you. We had the IV pole, the NG tube, and were on 'poo watch' from all the meds they were pumping her with. Not to mention her regular balance and vision issues. We didn't ever go far. Just enough to escape the room. We were moseying down a hallway and almost everyone we passed would look at us with those pained eyes, and I could hear them whisper, 'oh, that poor baby! Wonder what is wrong with her?', 'What a shame.' I felt angry and sad at the same time. Angry because these individuals were gawking at my child like some show. They could not stop staring. Sad because it was MY baby that people were dabbing their eyes over. Not one of them noticed that she was singing and smiling, they just noticed all the tubes and wires...yet she was happy to be out of her room walking and taking in the sights.
     
     EXAMPLE TWO: We were at the zoo a few weeks ago. A specifically bad day for Boo. She is getting to be a big girl, but for sensory reasons, she needed to be in the Graco stroller. It is clear that she has out grown the thing, but it was all we had. I was pushing her around. People were staring. I would try to get her as close to the exhibits as possible, since she has poor vision, and people would crowd in front of her with children who clearly needed some lessons in being polite. One lady literally pushed me out of the way and got in front. Then something happened. I had backed up and was sitting on a bench with Boo...trying to de-stress both of us when a Momma and a girl, about the same age as Boo, came into the exhibit. Both of them were wearing tshirts that clearly stated the 'diagnosis' that this family was battling but also advocating for. The waters of people parted, and the two of them were ushered to the front. My mouth dropped open! My first thought was, 'I need to get me some shirts!'. Followed quickly by, 'Wow, no one is even taking the time to look at us, because they would see that my girl needs assistance. NOT STARES, but just a little extra grace from the common people.' That sight has not left my brain.

   EXAMPLE THREE: We were at the mall shortly after Christmas exchanging an item. There were TONS of people, a huge amount of noise, lights, smells...you name it. I could see that this was not going to go as I had hoped. I knew this. However, daddy didn't have as much experience as this Momma. I kept saying that we needed to be extremely quick and may have to leave. He insisted we would all be fine. Told me to take a deep breath...which I did. He soon started to catch a glimpse when we were in the Apple Store and Boo threw a wireless mouse. Umm Yeah. Start activating evacuation route before we become 'buyers' instead of 'window shoppers'. I gave my the hubby the 'listen to me NOW' look. By the time we were leaving the store, Boo was into high pitched, blood curling scream. Out into the main area, I start pulling out my usual disaster aid. None of it is working one bit. People are fleeing from our little seating area with huffs and puffs, like we are interrupting their yoga sessions. Let me add...I am having a spa party myself with trying to hold a child that is 40 lbs, but might as well be 150lbs with all of the adrenaline flowing thru her veins! Daddy is now telling me to 'do something'. Usually, we are a really great team. But at that moment, I'm thinking, 'What do you THINK I am attempting to do?!' The crowd around us is growing. The STARES are piercing. I say, 'We need out of here pronto!' So Daddy grabs the other 2 kiddos and I clutch tightly to Boo. We hit  the escalator and Boo says, 'No Momma'. I calmly let her know that as soon as we are up that thing, we are outta here! She wouldn't have it though. Before I could blink my eyes, she bolted in the opposite direction. At that moment, my Momma Tiger jumps into action, (all 5 feet of me), and I catch her, throw her over my shoulder and start running up the escalator. I keep repeating, 'You are doing this Boo, You are doing this, We are almost there.' I turn around to see where the rest of my pack is and I see my hubby, holding our 2 others kids, with tears in his eyes. He has gotten the picture. The heartbreaking things that our girl deals with daily. His heart is crushed. I then start to tear up, but find out that should I continue doing so, Boo and I will not make it to the door because we will be in a heap on the floor. The instant we get into the fresh, outside air, I set her down. The others join us. We are all completely drained. Boo looks at Daddy and says, 'Sorry about that Hun', and gives him a huge hug. At that moment,  I knew the sensory meltdown was for a greater good. Daddy wasn't  just hearing about anymore, he had experienced  it. The 'Mall Trip' has forever changed his view on a few things...to me, that is priceless.

    All of us SN Momma's endure stares. It is a topic of conversations frequently. How do you deal with it? I know there are some families that give out business cards to 'starers'. Some have a little saying that they say quickly as they are leaving. I am still formulating my plan. The business cards seem like an interesting idea, because you can advocate with out saying a 'word'. God knows that if I started, I wouldn't shut up!

   To the STARING CROWD. Good lands, give us a break. We are not a freak show. We are not here for your entertainment. We are parents trying to help our children survive this world. According to the  Sensory Processing Disorder Working Group of Ben-Sasson 2009, 1 in 6 children suffer from a form of SPD that is due to a medical condition. Chances are, you will see a meltdown in progress.Your snide comments of, 'That child needs a good spanking' or 'That parent needs to get control of her' are NOT appreciated!!!! There are so many medical diagnosis that make it difficult for our kiddos to adapt to the outside world. Do you realize that on the inside, our children are just like you and me.
     In a good moment of clarity, my little girl will ask why YOU were starting at her? For your info, I do know what I'm doing. I spend more hours trying to communicate with my child than you do at your desk job. I will never get a vacation, because this is a life long process. And Yes, I would give my life for this child that I love with an unconditional love. I am not going to 'send' her away for treatment. I was hand picked by the Creator Himself to be her Momma and that's what I will do til the day I die. So the next time you feel like being an onlooker to a kiddo who is just trying to tell her Momma what she needs in a different fashion than you are used to, please, be a gem and put the eyeballs back in your head and be on your way. Maybe on your way by, offer a word of encouragement, because in our world, the STARES are all too common, and the 'Keep up the good work' is almost never heard.

   My last thought is each of us need to remember is no matter what the battle is we are facing, that we are Created BEAUTIFULLY Special and should treat others with the same respect. If you don't like little eyes staring at you while you are picking your nose, eating your dinner, or making a phone call, chances are, others don't appreciate the audience either.

  My fellow Momma's. Keep up the great work. You got this....don't ever give up. You were given this calling. Respond with everything you have inside of you. The paybacks are out of this world!

Blessings<3

You Are Not Alone

      Do you ever have a day when you think you aren't gonna beat this? THIS... the special needs life. The overwhelming and never ending appointments, phone calls, paperwork, meetings. That's not even the 'real' work. Let us not forget the little kiddo who holds our Momma's heart. The one that we attempt to move heaven and earth for!!!!
     I truly try to be an optimistic person. I attempt to see things from multiple points of view. But there are some days that I really want to let people have it! For example, the ladies who stare at my child in the store while my girl is experiencing a sensory meltdown or the insurance company that loses my documents and acts like its an inconvenience to wait on ME to send it again. Let's not forget the school administrators who don't even have kids, let alone deal with the special needs kiddos, IEP's, ETR's..... and should be removed from their position. Am I the only one who has family members that are positive they can handle the entire situation better and are waiting for you to screw up bad enough that they may actually get a shot? Today is one of those days....don't you dare cross me.
    I don't want this post to be 'Oh poor pitiful me'. I want this 'therapy writing' of mine to let you know that you aren't alone on this journey. When you feel like you are isolated, tired, and have no more to give, remember there is a sisterhood all over the world fighting tooth and nail to make sure that their child is receiving the best possible care. When you are up in the middle of the night, contemplating another ER run and dreading that you won't get the treatment needed, you are not alone. The next time you get punched in the gut with another impending diagnosis, treatment, or daily living adjustment, you are not alone. When you head to the shower for the first time in 3 days only to melt into a puddle of tears, you are not alone.
   I know I may catch some grief about 'Well at least your child is still living'. Yes. I am very grateful to be able to hold my 'Boo' everyday. But I am being honest. Being a Momma is just about the hardest job out there...if not the hardest. You add special needs to the mix and let me tell you, there is never a moment when your mind stops. That continual mindset will wear your body down. I am so weary of people looking at our community and telling us to suck it up! Really? We are not complaining. We are simply stating that this is hard and we are imperfect. As much as we would like to think we are 'SuperMomma's'....(and we are to an extent)... we aren't invincible. We need help. We need support. We need to know that we aren't alone.
   I wish I could look each of you in the eye and tell you 'YOU ARE NOT ALONE'. As you walk this path, keep your chin up, and don't be afraid to admit the truth...whatever that is. Today, it may be that you need help with certain tasks. Tomorrow,  you may need to look in the mirror and tell yourself that you are doing a great job. Whatever the day brings, I encourage you to send this message to each fellow SN Momma you know :

YOU ARE NOT ALONE.

Wishing you a moment of peace as you read this and the knowledge that a heart beats the same as yours, in this sisterhood 'Created BEAUTIFULLY Special'.

The Necessary Evils

      This week had one of those 'Must Do, But Really Don't To' tasks. Our girl's, (I will refer to as 'Boo'),  Educational Team Report or 'ETR', a set of evaluations that are required by the school at the beginning of preschool and then are repeated again at the transition into kindergarten. I dread these meetings for a number of reasons. For one, it causes me to look directly at the negatives reminding me that she is very behind. I remember sitting at her last ETR Meeting 3 years ago (HOLY MOLY! time flies!!!) and setting goals, dreaming of where she'd be after all of the intense therapy that the school and doctors were recommending.
     In my head, I know that she has come leaps and bounds in the last 3 years. She can now write and an 'L', the first letter in her name, 80% of the time. She can sort objects like food and animals into the appropriate pile. She has achieved riding the scooter ALL by herself!  She can catch a ball, walk up and down the stairs, turn the T.V. on and off with the remote, dance herself silly...quite the accomplishments for our Boo considering the Doctors said she would be in a vegetative state her whole life!
      Now, for the areas she is lacking. She cannot identify colors, letters, shapes, etc, which are the necessary building blocks for her to advance in the area of academics. She is  unable to pedal with her feet on a tricycle or play age appropriate games with her peers. All of her daily living skills (i.e. dressing, bathing, eating) need assistance from an adult. Big girl panties are no where in the foreseeable future. Her knowledge of danger is limited. The forms of communication are only interpreted by those who are around her most of the time. The list is continued....
     Hospitalizations are always looming. Therapies get cancelled, moved around, rescheduled, you name it. Therefore we work extra hard at home non stop. That is what this special needs life requires.
    As I sit and stare at the mounds of paper work, lists of phone calls to make, and the upcoming appts on the horizon, looming tests.... I close my eyes. Do you know what dances across my vision?  A beautiful, amazing, smiling little girl. A girl who doesn't believe what the professionals say, what the test results are, or how she appears to others. She is too focused on beating the odds and just being HER! Which is an incredible feat if you ask me.
     Are you a Momma to one of these special gifts? There are so many moments when we must look at the charts, statistics, diagnosis, progress reports, prescriptions, therapies, etc. We need to take more time to put all of that aside and look at this soul, this heart, this person in front of us who is one of the most tender and beautiful creations ever made. To make more moments of praise, of celebration, because we know all too well, that tomorrow is not promised. As grown ups, we have responsibilities that we can't neglect, I understand that completely. In all the hustle and bustle of our frantic lives, may we never forget to take advantage of every single moment that may bring a smile to that precious face that we fight for with each breath we breathe. What an honor to be able to be called Momma by one that was 'Created Beautifully Special'.

The Purpose of YOU!

        Do you ever wonder why you were put on this earth? Are the tasks that you do e-v-e-r-y s-i-n-g-l-e day really worth while? What does the purpose of ones life truly embody?

      I have spent a lot of time dwelling on these thoughts over my journey here on this earth. I do know that every individual has been created for a very specific reason. I will admit, I am a bit of a people watcher. I am (rather....used to be) that lazy bum you see sitting on the bench at the mall observing people hurry by, wondering where the heck they are headed. Why are they at the mall? Are they buying a gift for someone they love? Returning a 'present' from a person who is anything but a friend? Have they found true love? Are they living out the dream of a lifetime?.....I could go on forever. You get my point.  

     However, my surveying of the masses has changed since becoming a special needs parent. My eye's are now drawn to Momma's in the crowd. I try to catch a glimpse of their eyes. You can tell a lot about a person if you look  in their eyes. What I have seen is very interesting. I have noticed, we Momma's lower our gaze and forge ahead. If we dare look up and meet the eyeballs of an onlooker, (in the midst of trying to keep Peggy Sue's binky in, catch the bottle that is threatening to fall, hold the hand of 2 yo Jenny who  wants a new toy from THAT store, feel around with one hand making sure the purse is still attached to my being....is that my cell ringing....lovingly reminding Johnny to pay attention to where he is walking, Momma is pushing the stroller and needs his help, and most of all petitioning God above to please let us leave this place without one more sensory overload meltdown)  we break the eye contact as soon as possible. Why is that our response, I ask? Because the judgments of the staring population burn right through our insides. We are strong and amazing individuals. But when it comes to those passing judgments on our kiddos who they know nothing about, the Momma Bear is born. This creature is the most beautiful, mysterious, yet fierce animal you will ever meet. It is not something to be messed with. It makes up who we are. Momma's put every single ounce of their being into making sure that their beloved cubs are cared for, whether typical or special needs. We wear ourselves ragged and forget that WE have a purpose too. An amazing light has dawned on me recently. Here is my revelation- My dreams have changed since being on this journey. For example: I am anal about having a clean house, but in real life, my house is far from spotless. I would love to cook gourmet meals for my family, but I am more focused on making sure that GI issues won't arise from the meal I am placing on the table. The people I talk with most are my child's medical team, not my girlfriends. Please remind me, what is a date with the man I love? Sleep. Ummm yeah. Do I dare mention my daily appearance? Oh heavens.... that is for another time. It's ok to let those dreams change, grow, and adjust. It's not ok to let the person on the inside disappear. Just because that picture in your head has not become a reality doesn't mean that your purpose is null and void. It means that you have been called to a different position. One that not everyone gets the shot at. A life that, truth be told, most people don't want. I have met numerous people who say, 'You were given a handicapped child because you can handle it, I could never do what you do.' Oh, my friend, I beg to differ. I am an ordinary person, taking on this world just like you. I love my children, my husband and my life. Most of all, I am working hard to fulfill the mission that I was placed here to do...... to be the woman that has been 'Created BEAUTIFULLY Special.'

    Welcome, my friend. Let's take this journey together.