Explaining the effects of MS to kids

Children love to be outside.  I think my kids would spend all day out there if we could.  They can run free and not worry about making too much noise.  They can expend energy that I wish I still had as an adult, an adult living with MS that causes fatigue.  Ayden got a new bike recently and he love riding it around our cul-de-sac.  He loves throwing the ball around with either his dad or me, playing basketball, T-ball or helping Reuben cut the grass with his toy lawn mower.  Makayla’s favorite thing to do is play with sidewalk chalk.  She can sit there for a while and be in her own little world drawing on the ground.  She especially loves it when the other kids in the neighborhood come over.  She gives them hugs and shares her chalk.  Makayla also likes to play sports with her brother, even if she swings with the bat upside down.

That is why the conversation that we had with my son last night was so hard.  The weather is getting hot and he wanted to go outside when we got home from work and picked them up from daycare.  This was how the conversation went. .

Reuben:           “Ayden we can’t always go outside when we get home from daycare.  Mommy has MS and when it is too hot out she gets sick from the heat.  So if Daddy is busy and it is to hot outside then we won’t be able to play out there because you don’t want Mommy to get sick do you?” 

Ayden:             “Yes!”

Reuben:           “No Ayden we don’t want Mommy to get sick and if she stays outside and gets to hot then she will get sick.  We don’t want that do we?”

Ayden:             “No, we don’t want that.”

Reuben:           “OK, so you understand that if Daddy is busy and it is too warm to go outside then we need to play inside.  You are too young to be out there playing by yourself, OK.”

Ayden:             “OK, but can I ride my bike today?”

A part of me wanted to cry, but this is my reality and I don’t want him to think that it is a bad thing that is going on.  I try to get outside with the kids as much as I can.  We are outside in the dead of winter with all our gear on as long as it isn’t too cold.  This can even be tricky at times.  Often I get too hot so I wear layers that are easy to shed off as I find myself getting warm. 

How do you tell your children that it is too hot to go outside?  How do you tell them, I understand it is sunny and blue skies and all your friends are outside playing, but we need to stay inside?  Kids understand the concept of it being too cold outside, but too warm. . . .  There is no such thing to a child.


 

Water is my friend during the hot weather months.  I found a fan that is connected to a water bottle that I keep filled with water and a few ice cubes when I know I am going to be outside.  Our house is also a fan of Popsicles.  I keep the freezer stocked in the summer because that way it cools me from the inside.  Both do a lot to keep me cool, but on some days nothing helps and I have to be stuck inside.


This morning I got the kiddos ready and we were heading out into the garage to get in the van to go to daycare.  I opened the door and the heat had already started.  Here is the conversation that occurred between Ayden and I. . .

Me:                  “Wow, it is hot out here already!”

Ayden:             “Mommy, are you going to get sick?”

I had to catch my breath when he asked me this.  My 4 year old little man understood what we were talking about yesterday on the way home. 

Me:                  I hugged him the biggest hug and said, “Oh buddy, it’s not too hot out right now so Mommy will be OK, I love you.”


When I left work it was warm out, but I could feel a little bit of a breeze.  I figured I better take advantage of today since the heat index will be in the 100's this weekend.  I picked the kids up and we played outside and stayed as cool as possible with water and Popsicles.  It doesn't get any better than this!!