Wednesday, June 17, 2015

Back to school blues

Many of my friends have been posting pictures on facebook of their children heading back to school.  I love seeing the kids.  Watching them grow and move forward.....

But sadness follows immediately and pain squeezes my heart.

My friends, friends I've had since childhood...posting pictures of their second grade kids.  The grade my Lillian is technically in.   I see them and I'm happy...but each time I think of it I reflect on my little angel who is so very far from her peers...and I just feel sad.  Sad to see the milestones that continue to get farther and farther away from her.  Falling farther and farther apart from her "peers".

I told Matt tonight I didn't understand why it made me so sad.  I had to hold back my tears.  There is just heartbreak I can't explain.

Everyone...most everyone...looks at Lillian and usually the response is "oh I think she's just doing great".  Well, she is doing great.  BUT... can you understand the pain of watching her grunt to nonexistent people playing in her own little world where I can't understand a thing that's happening.  The daily frustration I feel when she's desperately trying to tell me things in grunts that I never know what she's saying and she just gives up.....or when she gets sad and I have no idea why because she can't communicate it to me.

I'm thrilled that she is relatively healthy right now.

She's full full full of love and she is happy most of the time.  Thankfully.

But there are daily reminders of things that will never be for her.  That's our reality.  And right now, it just makes me sad.

 Tomorrow's a new day.
Written in august 2014

How a bathing suit brought me to tears

So, you heard someone weeping in the dressing rooms?  That could've been me.  You thought to yourself, well, gosh I know bathing suits are not my favorite thing to try on either...but crying???

You see, I was in there with my 8 year old daughter.  She's only 35 pounds or so.  Since her body doesn't grow in the way that it should, her body just doesn't fit into clothing properly.  Of course, seeing her undressed always tugs at my heart, as I can see almost every bone protruding through her skin.  It causes me to wonder what keeps her from having broken bones every time she falls? Anyway, as I put one bathing suit on her and it was too big, I moved on to the next which was too small.  No matter the size, nothing seemed to fit on her.  One pieces, bikinis, was just becoming crazy. We tried EVERY single style of suit they had on the rack  I felt the tears coming on.  I tried to hold them I hollered out to my husband, "I don't know what we're going to do...nothing fits her"

And then, a moment of clarity...well, maybe I can buy two sizes of the same two piece suit.  Of course, the most expensive one is the only one that semi- worked.  The bottoms were fours, but they still gape around her tiny thighs.

Clothes have always been an issue for our Lillian, but for some reason, the bathing suit drama just got the best of me.

So, half an hour later, two swim suits in hand, roughly thirty dollars poorer...(LOL) we left with a semi-fitted bathing suit.

And that's how a bathing suit brought me to tears.   Things are not always as they seem.

Monday, June 15, 2015

Did you know?

There are easier, kinder ways to let people know you miss them.  (let me just say I'm sure I've been guilty of this very thing, but it's been so long I can scarce remember)  I've written of my experiences recently of missing church on Sundays.  ***Listen, I know this life is not all about me and my little world...I get that...but this little blog here is a place for me to release things from my mind or maybe touch someone else on a similar path...or enlighten people who may be in the dark***

We, as a family, have been living through some very difficult situations in the last seven months.  All of it revolving around the health of a few of our kids.  It has been HARD.  I have landed in pits and struggled with my parenting.  I have never stopped praying or seeking God in all of these days.  While there may be some who view my lack of attendance at church as is not.  I have been told as much.  Me and Jesus have talked about it.  I have struggled will feeling offended by my friends and church family. Every time, I realize, it's about Him.  It doesn't matter what other people think or say.

Did you know that your exaggerated, surprise appearance to my walking in the church was funny once, but after the third time it was difficult for me not to feel shamed.  Did you know when you "re-introduced"yourself to me for the third time, it ceased to feel like a joke.  Did you know when you asked me about my "annual church visit" for the second time I had trouble keeping a smile on my face and feeling loved?

Did you know that morning was only the second time this year I've gotten my husband to come to church.  Did you know we were late because we couldn't get our child's feeding pump working properly and it took nearly twenty minutes to fix it?  Did you know I was worried my medically fragile child might get sick just by bringing her into church?  Did you know I battled tears as I felt there was no place for her during children's time eventually leaving her in the preschool room with three and four year olds?  Did you realize I felt there was little connection with God because I was monitoring my toddler because I don't want him in the nursery for fear he will bring something home to his medically fragile child?  Did you know we pulled our child out of church and school and large gatherings and she stopped being sick ALL THE TIME?  Did you know I do trust God, and I believe He's given us discernment in all of this?

I'm an honest, fairly forthright, not too too private kinda girl.  If you know me at all, you know this.

Did you know you could say, "oh how I've missed you Michelle"  "oh how I've missed your sweet baby we've little seen" "Is everything alright? " "I must have missed you in passing, so good to see you today"   Did you know how much that would hug my heart?

I guess my pastor would probably say, "waaaah waaah waaah" , so whining time is over.  Just some thoughts from a special needs mom trying to do the best she can.