How lucky we are!

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It was a beautiful Florida day.  The sky was blue and it was cool (so special for south Florida) Our neighborhood was putting on an Easter Egg-Strava-Ganza with crafts and food and an egg hunt.  It had a nice home town feel to it.  It started at 10:00 am but I needed to get Michael out of the house so we drove over to check it out at 9:30.

It was pretty much set up, just a little girl still hiding the eggs.  So holding hands we walk up to the craft table and the lady welcomes us and starts talking to Michael.  I explained he was non verbal and had special needs.  ‘Oh” says the lady “I have a degree and worked with special needs children for many years.”  I felt relieved, she understood, so when Michael started grabbing the candy that was set out for cookie decorations it wouldn’t be a big deal.  Right?  Well sort of.  She explained they were for the cookies and handed him some other candy.  I took him to the playground, to get him away from the “cookie decorations,”  which was the egg hunting field.

He ran all over that playground completely oblivious to the colored plastic eggs hidden every where in plain sight.  Stepped on a few and kept on going.  After a bit, I wrangled him in to see if I could get a picture in front of the display.   As many of you know getting a picture of a precocious 5 year old is a mission in itself but add a Hunter boy high on candy almost impossible by yourself.   When Michael sees something he likes he just goes for it.  Someones cotton candy, a glass of anything with ice in it – he sticks his hand in to get the ice, or someones golf cart.  Fortunately, the owners were fine with him sitting in it.  What screams Easter Egg Hunt more than a kid in a golf cart?


The excitement is mounting they have called for the children to line up for the egg hunt.  Michael and I walk over and I am wrestling with him because he is always trying to wriggle out of my clutches.  The ladies said “Ready, Set, Go!” and off they went including Michael but while the other children ran and squealed with delight, he went to the slide and tried to walk up it and then decided he would use the steps which had eggs on them and children’s hands reaching for them.  Michael didn’t even notice and got to the top of the slide and it hit me like a ton of bricks.  I stood there looking at my sweet, beautiful little grandson and broke down crying.  My heart ached so bad, not for him, he was oblivious and happy, but for me.  I didn’t want anyone to see my crying in the middle of the egg hunt so I bribed him with my Iphone and he came running and we got in my car.  I cried so hard I had to sit there for a few minutes.


I am usually the one that realizes how lucky we are.  There are so many boys, children, people who are so much worse off then we/he is.  He can run and laugh and isn’t that what childhood is about?  I always say why would you be crying?  Look at him, he is so happy. But no matter what I told myself that day in the car I still grieved for my dreams of him.  I cried because I am selfish and want him to have what those other little kids have. When I stopped crying and looked in my rear view mirror to peak at my precious boy, he was giggling and grinning from ear to ear at some silly thing on the phone and I realized how lucky we are.

There is hope for this sweet boy and the other Hunter Syndrome boys.  Gene Therapy, a possible cure is so close.  Just need some money, well a lot of money, 2.5 million to be exact.  All the families are working so hard to make this happen and save our little boys.

Please donate (any amount is greatly appreciated) to MPS Super Hero Foundation http://mpssuperhero.org

MPS Awareness Day – May 15, 2017 wear puple to show support.

 

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My Christmas Miracle

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2016-santa

It’s funny how things seem to come about. Michael has never been interested in Santa or anything to do with Christmas time. I take that back, maybe the the blow up decorations out front of our house. He has no concept of all the commotion surrounding the holidays. He is in his own world and as happy as can be! I, on the other hand, was feeling sorry for myself. When you have children and grandchildren you have dreams for them, dreams for yourself to share with them. Santa, Easter bunny, tooth fairy, t ball, Halloween parades at school and trick or treating. Traditions, watching the Thanksgiving Day Parade together and Fourth of July celebrations.

Hunter Syndrome stole these things! Not from him because he knows nothing of them so does not miss them. It was stolen from his mama and daddy. It was stolen from aunts, uncles and Grandparents!! So the holidays are approaching and as I get older seems to get a little less exciting. The excitement comes from little ones eyes growing wide with wonder at Christmas trees, decorations and the big guy in red, Santa!! I knew from previous years that I would not be seeing that wonder and glee in my sweet little Michael’s eyes. I tell myself stop being a dolt and be thankful he is healthy and happy. When you get down to it that is ALL that matters.

Black Friday I am watching my sweet grandson. We were bored staying at home so I thought lets go to the mall. (Really the mall on Black Friday? We were really bored) Ok if I find a parking space without any drama and quickly we will park and go in. Don’t you know, we found a spot so easy. I saw people circling like buzzards with sour faces looking for spaces. And we found one right away. We go in and walk around. Stop at the Disney store where he promptly walks in front of kids and parents and turns the computer for the movies to a different one. He loves computers, laptops, tablets, phones. We got out of there right quick. Next stop, the pizza place where he had a slice and was quite happy. Time to go now and as we start walking I see Santa coming back from his break and point him out to Michael. He smiled and pointed. I couldn’t believe it he was happy to see Santa. there was no line so I took him over to see Jolly old Saint Nick and was blown over by what he did next. Michael took his hand out of mind and ran to Santa and hugged him. Not once but several times. Smiled and hugged him. I wanted to cry right there in the middle of the mall. My Christmas miracle.

You can’t convey the emotion with what happened but I told his mama and daddy and they couldn’t believe it either. I was hoping it wasn’t a fluke. The next day mama, Michael and I stop by Walmart and as mama was paying Michael takes off. No worries I know where he is going and I followed close behind to the Subway with the chips and Darn Icee Bear. Mama reaches us and I point out the mechanical Santa. She directs Michael’s attention to it and he is off like a linebacker in the NFL. He runs to Santa and tackles him almost taking him down. We are so excited at this new discovery of his and laugh as mama stands Santa back up.

My Christmas Miracle is my sweet little grandson happy and if that now includes Santa even better.

That Darn Icee Bear — bebravemylittleoneblog

That darn Icee Bear, in front of the Subway in Walmart, is the Bane of My Existence! Not really lol but he has caused some minor friction between myself and my grandson Michael. On the weekends we usually end up at Walmart for one thing or another. Sometimes just to get out of the house. […]

via That Darn Icee Bear — bebravemylittleoneblog

All for One and One for All!

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IMG_2970.JPGWhat does incest, lost opportunities and grass-roots have in common?

MPS II aka Hunter Syndrome Community.  Hold on, wait a minute give me a chance to explain.  Don’t judge me just yet.  I’m sure some of you must think I have lost my mind.  How can I be so vulgar?  Hear me out.  I want to put out there that 1.  I am not judging anyone on how they react to “the situations” 2.  I really don’t know what I am talking about , but we are all in this together and 3.  I do know we all want the same thing.  A CURE!  ASAP!

When I say incest I mean we are a very small community.  Posting on FB for what ever it may be, a go FundMe, an event, etc. While the post and plea may find its way into a few timelines let’s be real it’s just being passed around by the same few people in the same boat.  Don’t think we can find a cure that way.  I do know it feels good to say this is the best I can do right now.  I’m not a type A personality and I get bogged down in the details so for me posting on FB is my go to as well.  I share what ever I see in our community hoping people I know will get involved.  It really hasn’t worked for me.  Just the same little family.  Incest.

So, If incest is not the answer, maybe we (I) should think about missed opportunities.  Once again I am not judging because I am in this with you.  Up to my neck.  We as a community of parents, grandparents, family and friends seem so “poised for outrage” each time we are out with our little boys and someone gives you “the look” or makes a comment on how you should handle your child or even go up to your little one and tell him to shut up because they can’t enjoy their dinner with him around.  These are lost opportunities.  We have been given names like “warrior mom” or “dragon mom” so now this has become the kernel planted that means you have to fight.  You do but pick your battles.  Fight coming from a place of understanding that these people are ignorant.  They have no idea.  So instead of coming from a place of outrage take a moment, a deep breath and if possible explain in as a succinct as possible.  This takes me to grass-roots.

Grass-roots.  I have been thinking how can I educate more people?  How can I drive more people to donate?  I thought about all the lost opportunities I have had almost everytime I go somewhere with my sweet little grandson.  Recently, we were at a Dolphins game.  We had the best day!  That little boy was so good.  As we were walking down the winding ramp after the game we passed a group of girls/ladies.  One had a tray with a few items on it, one being cotton candy!  Michael walked by and took it.  It made perfect sense to him.  She was irate.  If looks could kill.  I thought that was a little much but who knows what that cotton candy meant to her.  Any way we apologize, mom feels bad, dad is annoyed his boy did this and I didn’t want them to get away with their behaviour.  Instead of being angry by the time I backed up to them I thought I would give a very brief education on Hunter Syndrome and asked them to go online to check it out.  Without having anything to givethem I am pretty sure they forgot about it by the time they got to their car.  Put maybe if I had a card to give them . . .  I know some of you have cards to hand out.  I think this is a great idea and maybe we should all try this approach.  Next time someone looks at you or him, makes a remark hand them a card and ask them to be so grateful that their children are healthy and to help us find a cure for ours.

When a certain campaign came out about Hunter Syndrome I handed out cards to everyone…in the grocery store, at the park, any time I saw someone looking my way.  Why am I not still doing this?  If we take a poitive approach with the love we have for our boys maybe this grass-roots card program would reach more people then we imagined.  We need a CURE!  All for one and one for ALL!

 

 

 

It’s getting harder and harder

I love this picture of my sweet little boy Michael running in the water park so happy and carefree!  Except . . . He stole that ball right out of the hands of a little girl. You might say “boys will be boys”. Then trying to hug an even smaller little one year old they tumbled over. The mother was irate. Michael’s mom tried to explain “he has special needs”. She didn’t care she was worried for her baby. We understood completely her point of view but she didn’t even want to try and understand Michael. As Danielle (Michael’s mom) walked away I could see she was heartbroken and was about to cry. I told her it would be ok, it’s ok but it’s not and it won’t be. There are always going to be people that will judge and whisper loud enough for you to here and roll their eyes and have the face of disbelief and disgust that you can’t handle your child.

Michael is a sweet loving boy. He is non verbal. Playing in the park he just runs up to children, smiling and so excited to be with other kids, and grabs them by their hands and tries to pull them to go play with him. Usually the kids are shocked and don’t really know what to do with him. Here we go with another explanation. 

Young At Art Museum was a favorite place to take him. He loves it so much we have yearly passes. It’s getting harder and harder to control him. He is only 4 years old but looks and weighs as much as a 6 or 7 year old. And he is fast!  He gets away from me all the time. Any way he really likes doodling on the computers but wants to “help” the other kids with their art work as well. Not looked upon very favorably by the the kids or parents. I get it they worked hard on their masterpieces. After getting him away from there he takes off and sees a balloon tied to a purse or something and he goes straight for it and lets  it lose and it floats up and away then follow that up by batting the next balloon. The two mothers gave me “the face” and rolled their eyes and began talking about us (me and my boy) what a terriblely behaved child and a grandmother that sucks. Needless to say I bribed him with my iPhone and slunk out of there. 

These scenes have been going on for about a year maybe two. It’s getting harder and harder to let it slide. Sometimes I try and explain he has “special needs”, sometimes educate, sometimes slink away. It’s becoming harder and harder. I don’t like going to YAA any more or the park unless no one is there but that isn’t fair to Michael and lord knows he already has had his fair share of things to go through. So I smile and I love him with every fiber of my being and we go and we play and it is on me to make sure he keeps that sweet beautiful smile on his face. You see he is completely oblivious to the looks, the faces, the not so nice words. They aren’t for him anyway.  They are for the parents and grandparents and that really doesn’t mean anything to us either. They are ignorant-literally ignorant of what we have to endure each day. Knowing what we know about the rare disease he has. So even though it gets harder and harder I forgive them and try to be a better human being for my grandson. 

Breathe

I had no idea that I wasn’t breathing, that I was holding my breath waiting for him to come home to me again.  Reading that first sentence makes me smile because it sounds like a romance novel.  But I am “in love” with him and I think he is “in love” with me too!

While he was in North Carolina with his mother and father, finishing up the control group portion of the clinical trial and then moving on to “the clinical trial” where a neurosurgeon would implant a port and thread a catheter through his spine, I was at home holding my breath and waiting for him.

Finally, after nine days I call from the car to say I am on my home from work.  Mama answers “OK, we are on a walk so just circle the neighborhood and you will see us”  As we are talking I see them and I get a hitch in breath.  “I’m here!  I see you! I am pulling over now”  I get out of the car and call his name “Michael”  he turns knowing my voice and a smile comes across his face and he tries to get out of his stroller.  He looks like a little rag a muffin in just a tee shirt and a diaper.  The sight of him had my heart pounding.  I wanted to cry.  His mama helps him out of the stroller and I kiss him over and over again.  He puts his little hand in my and starts walking along the sidewalk.  I worry his little feet may hurt walking over twigs and dried leaves but he keeps going.  After a few steps he stops, looks up at me with his beautiful big brown eyes and long black eyelashes and pulls me down to give me a hug and a kiss, he looks content and then proceeds to take my hand back and walk some more.  we did this several times.  Sometimes I would stop to kiss him sometimes he stopped me.

I had a hard time catching my breath at first.  It felt like he was giving me CPR with the hugs and kisses and I was finally able to breathe again.

After we had exhausted our reunion on the sidewalk of our neighborhood he got into grandma’s car, mama packed the stroller and we went home.

Breathe!

 

Is Anyone Out There?

Is anyone out there?  I feel so alone. I’m not an invalid or under house arrest but I am in my own prison. One which I made and could tear down. As I drive down the street I have my freedom if I want it. So many people on this earth how is it possible to feel so alone?  Most people won’t have any idea of what I am talking about. 

Dinner with a friend, or my son coming for dinner neither one has that magic that will pull me out of this. Sitting under a tree in my car where I once met a lover brings no feelings. Except for feeling sad and alone. Not because I miss him but because it means nothing now. Something that had such strong emotions now is nothing. 

When I die I think I would like a natural burial. They have all kinds now a days. 

 I always wanted to be cremated because I could not stand the thought of my body rotting and bugs crawling over and through me. 

Now I believe my body will serve another purpose.

One where you can become a tree seems like a good one. I will be a part of that tree. Being reborn, giving the breath of life to others, shade for those in need, where squirrels can play and a place of rest for birds. 

I’m not meant to be alone in life or death.  I believe in God. I believe I will go to heaven. 

 Is anyone out there?

The day

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Installment 1

Every generation has that moment of remembering where they were when:

Kennedy was shot, the Columbia space shuttle blew up and when the first plane hit the Twin Towers. . .

Michael’s mommy knew in her gut, heart and soul that something was not right with her little boy.  I would chalk it up to “first time mommy worries.” Michael was not hitting all the major milestones at the appropriate times. I told her – “he will roll over when he is ready, he is a much bigger baby than the little skinny kids rolling over.  He has more to move! He will walk when he is ready.”  Don’t worry he will talk when he is ready. Some kids don’t talk till they are 3.  Albert Einstein didn’t talk until he was four for Pete’s sake and look how that turned out!
But she persisted. She knew something wasn’t right but not what it was. She took him to doctor after doctor trying to find out what it was. Maybe Autism?  “No I said, he has no problem with making eye contact.” I, after all, thought he was perfect and beautiful. I was blinded by my love and her eyes were made even clearer by her love for her precious baby boy.  So she persevered and finally ended up at a geneticist office.
Now, I can’t remember the date, day or exact time but I do know I was at work and was worried because by now I did have a few doubts of my own. I calculated by the time the appointment was, wait time, office visit, that it would be safe for me to send a text to see what the doc had to say. My son texted back – storage disease. What? What the hell is that? Never heard of it! He texts back – google it, still in with doc will stop by your office afterward. “Ok see you soon” I texted.

Do you know how many different kinds of storage disease there are? Approximately 50 rare inherited diseases under Lysomal Storage Disease. Without any other information I looked and read until my head hurt. I finally tried images and saw a boy that looked just like Michael. I could not believe what I was seeing. With this picture were the words Hunter Syndrome. I googled it and my heart sank, tears rolled down my cheeks. This can’t be right! I asked my friends to read the page to look at the picture and we all knew it was right. It was true and I cried heartbroken. Reading the words life limiting with no cure took a piece of my life from me that day. My friends hugged me. What else can you do at a time like that?  That was the day . . .

These boys aren’t warriors

  I hear and see it all the time  – “these boys are warriors” and this just never resonated with me. Maybe because I’m coming from a place of a younger boy? Don’t be upset with me or judge these are just my observations and opinion. 

Michael just turned 4 and really this is all he knows. For some reason the boys have a higher tolerance for pain and a very happy sweet disposition. Everything that happens to him has become par for the course.  Business as usual. Surgeries for adenoids, ear tubes, ports, nerve conduction test under anesthesia, carpal tunnel, surgery for carpal tunnel, casts on both feet/legs, splints on legs and this is just one year. 

To me the warriors are the mamas, daddies, grandparents and extended family that have to witness his struggles, his pain. You see they know the difference of what a life should be for a little boy. The heartache they feel, the stress that is always there just under the surface. The doctor visits and the weekly infusions at the hospital. These are the courageous warriors. Brave souls that would do anything to see their little boy not suffer.