OUR KIDS ARE SOLDIERS ALREADY...BUT NOT 1 SOLDIER WILL STOP TRAINING.

  • A LETTER FROM A MOM W/A SICK CHILD

    To All the Moms Raising Kids With Medical Issues

    06/10/15
    It’s a phenomenon moms like me often face.

    I feel like we’re a little different. We find ourselves standing in a group of our peers feeling like we are on the periphery. Not in, but not out. We can’t relate and yet we can.

    I think we find ourselves worried about all the same things as other moms and at the same time none of the same things. We live in a world all our own. A world created for us by the unique needs of our children.

    I have had a hard time articulating the subtleties of this phenomenon. But one thing is for sure, the traditional rules and definitions of parenting don’t often apply to moms like me. And this changes everything.

    Moms like me struggle to feel happy when our kids are doing well “all things considered,” while facing the devastation that our precious child will never get better. Never be normal. Our “normal” is not normal, and so our definition of “doing well,” “thriving,” and “success” must be different from those of other moms.

    While the other moms are hoping their kid makes the school soccer team, moms like me are just hoping we make it through the week without an ER visit.

    While other moms are worried about flu season, moms like me are worried about hospital season.

    Academic success in our house is not how well he does in school, but rather if he physically made it to school.

    After school actives? We have them too. But instead of swimming and soccer ours are often physical therapy and pain management appointments.

    While other moms are trying to learn to let go, moms like me are trying to learn to let go too. Only we are trying to let go of our own dreams that our kids will have a normal childhood. We’re trying to let go and accept doing well “all things considered” is as good as it’s going to get. We are trying to let go of false hope and come to grips with the fact we will have to keep saying “No, actually it won’t,” every time someone insists it will get better.

    Moms like me rarely do coffee or lunch dates. Our nails are not done and we probably haven’t showered. Compared to most “normal” moms I’m physically a mess, still living in the survival phase of a newborn years later. Eating, sleeping, playing and living often need special attention, care or modification. While other moms are worried about their kid’s bedtime schedules getting messed up, mom’s like me are wondering if we are going to get any sleep at all.

    Moms like me have kids who deal with a lot. Childhood even in the best situation can be hard and heartbreaking and confusing. We have to watch our kids deal with all of it and then some. Our kids still get earaches, fevers and colds. Between normal issues and their medical issues, it feels like they never get a break.

    Moms like me have kids who also struggle with being on the periphery and it is heartbreaking.

    My boys like swimming, trucks, dinosaurs and hockey. They want friends and they want to be liked. They laugh and they love. They go to birthday parties and love bedtime stories. Their world is the same as typical kids and they can relate to their peers. But, at the same time they can’t relate.

    So often they have to sit on the sidelines watching their friends play, desperately hoping in vain their body will let them participate. Moms like me have to answer questions like, “Why am I different?” And so often we struggle to find the right words or an explanation.

    I hate that my boys have to experience the fear and isolation that comes with being different. But it can’t be prevented. It is a natural byproduct growing up with a chronic disorder.

    What I hate about moms like me is there are so many of us. I hate that so many children have to fight the seemingly impossible. Their families struggle in silence. They feel alone and isolated when surrounded by peers.

    So to all the moms like me, please know you are not alone. Moms like you are out there and we get it.

    We may be dealing with different genes and conditions, but we are the same. I hate what my kids are going through and I’m sorry yours are going through something hard too. Hang in there. You are my comrade in an unending fight and I love your resolve. I love how much you do for your child. We will keep pushing on and we will survive. We have to. Our little people are depending on us.

    Please know, even though you can’t see us, moms like you are everywhere.

    We love you, support you and are rooting for you. You are part of a silent sisterhood. We are standing with you, we are following behind you and we are paving the way in front of you. Don’t be afraid to reach out to a mom like you for help. For advice. For support.

    To the moms like me in my life, thank you. I love you and I never cease to be surprised at the power of your strength. You continuously show me the true meaning of motherhood and redefine what it means to be a friend. You remind me of the beauty and the wisdom in difference. You’ve given me perspective, resolve and a shoulder to cry on.

    Thank you for being there late at night and early in the morning. When I feel weak, worn out and scared, thank you for always lending me some strength.

    But mostly, I’m sorry you have to be a mom like me.

  • What a parent will do for their children.

    My kids haven't gone through the SICKLE DRAMA that most of our community kids have dealt with. I can't speak on this and me imagining is doing a disservice to the parents that are dealing with it every second of the day. So...I am asking for a parents perspective on what is the initial feeling in their spirit when you watch this illness act a fool on your baby.

  • Sickle Parent Worries?

    **FEELING OF GUILT VS EMOTIONS OF A PARENT**

    I HAD TO COME TO GRIPS WITH THE FACT THAT THESE ARE THE CARDS THAT ((GOD)) DEALT..THAT IS THAT!

    NOW BEING A WORRIED PARENT IS ANOTHER THING...THAT IS
    NOTHING TO DO WITH GUILT.

    1 YOU JUST HATE SEEING YOUR BABY SICK
    2 YOU JUST HATE SEEING YOUR BABY SAD/MAD/TIRED
    3 YOU JUST HATE SEEING YOUR BABY NOT TREATED "NORMAL"
    4 YOU JUST HATE SEEING YOUR BABY FEEL LEFT OUT

    *WHY?*
    BECAUSE YOU AS A PARENT WANT TO TAKE ALL THOSE NEGATIVE THINGS AND PUT IT ON YOUR SHOULDERS, SO THE BABIES WILL NEVER FEEL AN OUNCE OF PAIN THEMSELVES...THAT AINT GUILT...THAT'S BEING A PARENT.

    LASHAWN HUTCHINSON

The TRANSITION into adulthood...BE PREPARED!

Ok yall...I've seen the pictures of this AMAZING SOLDIER so many times and I have posted and shared as well! I can honestly say that I was not ready for what I saw looking at the video... JUST CRYING LIKE A BABY!!‪#‎TEAMSICKLECELL‬ are at times numb when hearing about a fellow soldiers suffering! Yes...plz believe that even if I am not showing or saying MY HEART IS LITERALLY BREAKING INTO PIECES! FOR ‪#‎NURSES‬ AND‪#‎DOCTORS‬ THAT ARE COMING OUT OF ‪#‎MEDSCHOOL‬...can you honestly tell me that this child is faking? Children are the most UNFILTERED ppl we know so how can you register that OK HE NEEDS CARE ASAP but as soon as they turn 18 THEY'RE LIEING AND FAKING?! DID THE ILLNESS JUST UP AND LEAVE WHEN THEY COME OF AGE...SERIOUSLY I NEED AN EXPLANATION BC I'M LOST! BEING TREATED LIKE CRIMINALS AFTER FEELING THE CARE AND LOVE FROM THE CHILDREN'S HOSPITALS CAN LITERALLY KILL YOUR SPIRIT! Have you asking yourself DID I DO SOMETHING WRONG/WAS I CRYING TOO MUCH OR NOT ENOUGH/AM I DRESSED TOO UP OR TOO DOWN... AM I ALONE IN THIS? Y'ALL LOOK AT THIS VIDEO AND TELL ME SOMETHING BC ALL THESE FEELINGS ARE WELLING UP AND... IDK!!

 
 

Prince Nahsear(co-host of roundtable)..finding something to keep his mind off of SC is a MUST!

#Ted2 is doing Sickle Cell #Community Service...SHAWNSTESTIMONY.COM style! Everyone deserves a second chance...HE WILL BE MAKING AMENDS FOR HIS ACTIONS!
#Ted2 NEEDS some homework! Ask him ANYTHING you wants to know about Sickle Cell and he will have your answer when we continue his Sickle Cell #Community Service tomorrow. (((Soldiers In Training Assignment (age 6-15))) What should #Ted tell the world about your illness?



Soldiers Online Group

Hey Soldiers In Training and their parents!

How do you guys feel about a facetime/skype/hangout like GROUP!? Plz share ideas with us!

This is the beginning of a 4 part exc. about finding a way to connect with yourself where Sickle Cell is concerned. Finding a way to ACCEPT AND RESPECT her will BETTER YOU. Sooo...Here we go w/#1!

SOLDIERS IN TRAINING{S.I.T.} HAS A BLOG

Apr. 20, 2015

DO YOU PRETEND TO BE FINE?

The question is aimed at the ages of 7-15. The deadline is MAY 1 2015. You can write or record your voice/video to answer the question. YOU DON'T HAVE TO POST YOUR NAME. PARENTS CAN POST THEIR BABIES ANSWERS ALSO.

Speak babies...WE'RE LISTENING!

A Booklet that can be used by parents and caretakers when patient is in too much pain to speak.

THIS IS A SIMPLE BOOKLET THAT CAN HELP YOU MAKE GOING TO THE ER EASIER WHEN YOUR LOVED ONES ARE IN TOO MUCH PAIN THAT THEY CAN'T COMMUNICATE. YOU CAN HAVE THEM POINT AND YOU CAN FILL THE REST OUT FOR THE DR TO HAVE ASAP.

WE ARE JUST TRYING TO PREVENT THE SUFFERING CAUSED BY THIS ILLNESS.

Let them point to where they are feeling PAIN.

Let them point to how BAD the pain Is feeling. YES...the pic has a little comedy to it but it's VERY accurate.

Sickle Showcase: Soldiers In Training
This is just AMAZING!
Repost from his Soldier of a mom @sassy_sweetld:

DeJay's 7 now. Ss ‪#‎Warrior‬! Will be getting his first port soon. Love it @BatsonChildrenshospital here in MS. Tiffany made sure he knew anything and everything!
That's my baby! He's a hard stick. Even with the vein finder. His last hospitalization it took three sticks! On the second attempt, to see him cry those silent tears cut right through me! He didn't move, took it like a champ as the tears flowed. Can't do that again! Esp now since he's being transfused every 3 weeks. He attended this session to teach him about the procedure and the port. He knows all about why he's getting the port and the basic mechanisms. He's comfortable and in his words "I want this instead"!

QUICK QUESTION FOR MY SICKLE PARENTS...
ARE YOUR KIDS HARD STICKS? WOULD YOU CONSIDER APPROVING THE PROCEDURE? I CAN ONLY SPEAK FOR MYSELF BUT I LOVE MY PORT IMMENSELY.

ADULTS HAVE SO MUCH POWER OVER OUR KIDS AND WE DON'T IMPLEMENT IT BECAUSE WE FEEL BAD ABOUT THEM BEING SICK. CHILDREN DON'T WANT TO HEAR US PREACHING...EVEN IF IT'S FOR THEIR OWN GOOD. INSTEAD OF TELLING THEM EVERYTHING THEY CAN'T DO...CUT TO THE POINT. POINT BLANK...I KNOW YOU TIRED OF GOING TO THE HOSPITAL RIGHT. WHAT DO YOU DO THAT EVENTUALLY SENDS YOU IN? OF COURSE I'M NOT SPEAKING OF BABIES. I SPEAK OF THE CHILD THAT IS OLD ENOUGH TO KNOW IF YOU TOUCH SOMETHING THAT BURNS YOU KNOW NOT TO TOUCH AGAIN. SO YES...THEY KNOW WHAT THEY DO OR DON'T DO THAT MAY SEND THEM INTO CRISIS. SICKLE KIDS CAN'T BE TREATED AS KIDS...THEY HAVE DEALT WITH TOO MANY ADULT SITUATIONS TO DIAL THE CLOCK BACK EVERY DISCHARGE. THIS IS BUSINESS...BUSINESS OF LIFE. GIVE THEM THAT RESPECT AND YOU WILL BE SURPRISED.