Miles 4 Miles

Sister is a kindergarten teacher.  This school year has come to a close and as is the tradition, the end-of-the-year gifts are landing on her desk from her students.  A few days ago, she received the sweetest one ever -  a painting based off of some photos of us at this year's MDA Muscle Walk.  

These were snapped as we were walking with Little down the last stretch of the victory lap.

The painting was done by Morgan, the mother of one of her students.  Sister and I were both blown away, to say the least.  There may have been some tears shed.  Ok, who am I kidding?  Ya'll know I blubbered like a fool.  This mom not only took time out of her schedule to paint a picture for Sister, but she made sure to choose one that she knew would mean so much to her.  This not only told me what a caring soul Morgan has, but what a truly remarkable teacher my sister must be to elicit such a thoughtful gift from the parent of one of her students.  Go Sis!

Morgan told me she picked these photos bc she has a special needs tot of her own.

His name is Miles and he has some medical issues that come with their own set of challenges. At 10 months old, Miles was diagnosed with Neurofibromatosis Type 1.  If you'd like to check in with Miles, you can head over to his caring bridge page.  This sweet family could really use our prayers.  So I'm asking you all to add Miles, Morgan, and the rest of the family to your prayers tonight.

This week's Little's League member of the week:

Michael

Yes, I know he's been featured before, but this is a new picture and he's just so darn cute.

How to Refrain From Punching Someone in the Throat

A few weeks ago, I was at the pharmacy in the basement of the hospital in the children's area where they have a mat and 3 (yes, only 3) toys for the kids waiting on prescriptions. Knowing that strep is going around here right now and not being ignorant to the fact that most people in a pharmacy are there bc they are sick, I grabbed a baby wipe out of my purse and gave the table type toy a wipe down before I let Andrew play with/on it. A lady in there turned to me and said, "I'm a school teacher and I can tell you that the more germs they are exposed to, the better off they actually are." I didn't react well (shocker). I know that in theory, she is right, but strep?  I don't think my 2 year old needs strep throat to survive kindergarten.  Anyway, without any hesitation AT ALL, I bit her head off.  She actually backed away from me, picked up her purse and child and left the room.  Never mind what exactly I said, the words weren't even that bad (I didn't call her any dirty names or cuss at her) but my tone of voice and expression were vile enough to send her packing.  I mean I just attacked.  It was like a knee jerk reaction.  Apparently I turn into a rabid honey badger when someone dares tell me they know best for my son.
  

Obviously she had no idea that Little has Duchenne.  I'm sure she thought she was doing me a favor by telling me that kids need to be exposed to germs to build up their immune systems, although I am not a total moron and so already know this and her tone of voice was a bit haughty.  Even if she had been sugary sweet, I shouldn't have hissed at her.  As soon as she left the room, I realized what I had done and was pretty ashamed of myself.  I hated that I immediately launched into anger without a second of hesitation.   That is not at all how the Lord wants me to act.  That's not how I want me to act!  God doesn't want me to lash out like that and I hate that it just flew out of me like it was second nature.  I sat in the pharmacy and prayed for patience and tolerance while Little played on the germ free toy table.  I asked the Lord to give me a pause before I answer people who don't know about my son so I can take a breath and think about my reply instead of instantly jumping into defense mode.  Then I realized that everyone else in the room had heard and called all of their children over to them, so I quickly blurted out "he's not contagious!!" so they wouldn't freak out.  And yes, I know that would be funnier if you knew what I had said to Presumptuous Teacher, so you'll just have to trust me, it was funny.  

Once at a playground, another mother there asked me how old Little was when she noticed the way he waddles. After I said he was 2, I could see the shock in her face.  Then I got to hear the shock as it shot out her mouth when she blurted "And he can't walk yet?!".  This was about 6 weeks ago, so he'd only been walking for about 4.5 months plus the ground was covered in those rubber pellets and even I have trouble walking normally on them.  I half smiled and told her that he has DMD and it affects his physical movements.  She asked me to explain further, so I did.  I hate explaining it to unprepared strangers.  It means I have to watch their hearts break.  Try as you might, but when someone tells you that the beautiful little boy in front of you is going to waste away and die and there's nothing you can do about it, you can't stop the chain of expressions that will roll across your face. 1st is confusion

2nd is shock









3rd is heartbreak (sometimes there are even tears)

then 4th is confusion again as you try and figure out what you are supposed to do/say/react.  










**Newsflash - there is no correct response.  But there are responses that are better than others.  For example, "Oh........I am so sorry.  Is there somewhere I can donate to help find a cure?" is better than "OH MY GAWD!  That's so awful!  I would die! I would just die!!!!!"  This particular Park Mom had a good one.  She went through the Expression Train and then ended with a nod and a firm "Well, we are all blessed in our own way".  Then it was my turn to show shock.  That was the best reaction I've ever had.  The very first positive response I've received.  It was rather refreshing.  

So, as you can see, this is just something I have to get used to - this staring, this confusion, this diarrhea of the mouth from strangers.    So i can't lose my cool every time someone offers me unsolicited advice.  But i also know myself and know that I cannot be Pollyanna every single time someone shows me their ignorance of DMD.  Remember, I was ignorant to it myself until August last year.  And it's OK that they don't know!  They are BLESSED not to have to know the beast that is Duchenne.  I am thankful that people ask about Duchenne, that they want to educate themselves on it, but it is hard.  It is so hard to shatter their world for a few minutes when they learn the future this disease has in store for such a sweet, lovable little guy.

I asked a group of DMD moms how they keep their cool with certain folks and how they deal with having to tell people that yes, this is fatal over and over again.  One mom had a great idea - she printed up and carries around little business cards so that she can just smile, hand one over, and walk away.  How perfect is that for me?  Those of you who know me in real life are nodding your heads right now, aren't you?  

Well I made some up and now have a stack of them in my purse.  I have a feeling they will save me from a few simple assault charges in the future.

It gets out whatever point I want to make.  It can be "so there!" to the next Presumptuous Teacher, it can be a genuine "thank you for asking" when I just can't take watching someone fall apart, or it can be a "Hey, I noticed you staring" call out.  Plus, it lets you know how to educate yourself further if you choose, and where you can donate to change the future for Little and all the other DMDers out there.  Tells you what you need to know without verbally punching you in the teeth.  I encourage all of you parents of special needs kids to think about doing this - sometimes we're just too tired to deal or have too much trouble biting our tongues so maybe think about letting a handy little printout do the job for you.  In fact, if you want to copy mine word for word, that's fine by me.  Anything to make your day easier.

So, hopefully next time I find myself in of those situations, I'll get that Pause I asked God for and remember that I can just reach into my purse and hand them this little green card.

Today's Little League member:  COLTON K.  

Look at those muscles!!!!!!!!  Go, Colton!  We are so thankful to have your support!


********EDITED TO ADD YOU CAN READ PART 2 HERE! *****************

A Brand New Sister

That's right, my baby brother got married!

Not long ago, in beautiful California, Brother got his Mrs.  I will be calling her Lalew in this blog and she is a doll.  She's sweet, thoughtful, considerate, funny, silly, christian, calm, and every other trait I could ever want for my brother's wife (and on top of all that, she's a knockout!).  I've told Brother and Lalew this before, but the first time I met Lalew was at a family Christmas at my parents' house over 5 years ago (yeah, they rushed into it, huh).  In walks my dorky brother and behind him is this blonde, beautiful barbie doll.  My sister and I looked at each other totally perplexed.  Not that my brother is some hideous beast, mind you, but he's my brother - I was shocked that this stunner of a girl agreed to fly to Arkansas with him to meet the family.  He's a skinny little goofy guy from the south and she's a sunny californI.A. bombshell.  What in the world could they possibly have in common?  I didn't have to wait to long to find out, because soon enough, Lalew opened her mouth.



We all understood and we all fell in love with her.
:)
Really, honestly, I always tell people that I couldn't have handpicked a better girl for my brother to marry.

Here are some of the highlights from our trip.

* A crotchety old bag refused to let us all sit in the same row on the flight there.  I secretly wished Little would throw a huge hissy fit right in her face but instead he (predictably) turned on the charm and made said bag fall in love with him by the time the plane landed.


* Lunch @ La's parents' house where Little repeated "It's ridiculous!" with full dramatic effect after her dad said it while fighting with the new high chair he had put together.

*Rehearsal at the Nixon Library where I got snapped at by the wedding planner and my brother at the same time for talking.......even though Christie, my mom, my dad, and everyone else was talking too.

*Rehearsal dinner where I lost my lens cap for the 2nd time that day and I got to watch my brother cry over a guitar.



*Trip out to Long Beach and the Aquarium of the Pacific where Little got to pet a sting ray, a shark, and a horseshoe crab and we hung out with an old friend.

*Cince de Mayo @ Mother's Beach in Marina Del Rey where I mistakenly sent my mother to go after Little as he toddled towards the marina.....

* A 3 hour nap for Little Face then Pho for dinner.
*Sunday before the wedding, we took Little in the pool for the very first time.  He was a bit timid at first, then had a blast.

Don't try to figure the tattoo out - it's not finished yet.



*Finally, wedding time!

These next few images are priceless to me.  I wanted so badly for Andrew to walk down the aisle - he's 2.5 so there was no guarantee, you know.  But just knowing that one day he won't be able to walk anymore made this particular moment on his feet so significant.  I will always have the memory of my son walking down the aisle at my brother's wedding and that means so much to me.  Prepare yourself - this is the cutest ring bearer in the history of all ring bearers.

















Brother and New Sister, I love you so dearly.  Thank you for letting Andrew (and us) be a part of your day and letting us all have this memory to hold on to in our hearts.  I wish you all the best things in life and love and my God keep you and hold you near.