...And now a Walmart Story with Trish the Great.

***warning language***

Today I went to Walmart to get a few things.

I was walking through the card aisle when I heard what I thought was a child screaming something that was at first unintelligible. The screaming became louder and more persistent. When I got to the pharmacy section I realized the person screaming was a lady in a wheelchair. I figured out what she was saying too.


" I WANT MY FUCCCCKING SHOES!"


Then the lady would hysterically cry. There was a CNA with her and several other handicapped adults.

I continued shopping and the woman continued screaming:

"I WANT MY FUCKING SHOOOOOOOOOOOOOES!"

I found myself wanting to go and get this lady her shoes. It took lots of control for me to not tell the CNA to PLEASE GET THIS LADY HER SHOES. Of course everyone was staring. There was one patient with a helmet on pushing another in a wheelchair. An older lady that had down syndrome was standing by waiting. I finally did go up to the aide with her and asked if there was something I could get or help her with and she smiled but said no. The lady then tried hitting her and so I walked away.

I felt a lump forming in my throat (I know I'm a cry baby shut up).

sigh.

I try not to think about Makily's future but that situation forced me to.

What if Makily's behavior becomes this way when she is older? Some of the children are reported to have behaviors such as screaming and being difficult the older they get. Hormones and puberty aren't always kind to ES kids.

I fear that.

The last couple of days have been rough. Somehow last night Allen and I ended up in a discussion about what happens when Makily passes.

This is the most depressing, horrible conversation to have and we have always skirted around it or just avoided it altogether but for whatever reason last night it all just came pouring out.

Have I mentioned I HATE this time of year?

I told Allen I can't even see life without her now. How would I get up every day, how does any parent that has lost a child get up and keep going? I guess because you have no other choice but to keep moving forward no matter how incredibly painful it is. I would have to move on because of Jakob. He deserves a mommy and daddy that are fully mentally functional. Without him though I'm sure Allen would need to scrape me out of the bed each day. ....much like he did when Makily was first born.

This life is hard.

All about MAKILY.

I realized after I re read my last entry that for the most part that was just the medical stuff about ES. I know that information is invaluable but as a newer parent I know they will want to know what the child will be like. I remember CRAVING and desperately wanting to see an older child so I had something to expect or go on. Hopefully this will help another parent.

ALL ABOUT MAKILY.

Makily LOVES Spongebob. She will clap and kick and squeal when it comes on. She does the same throughout the entire movie Finding Nemo. She also enjoys Lady and the Tramp, Up and anything with Tom and Jerry. She tends to laugh hardest when Tom gets injured. We have also noticed if we watch "extreme chases" or something of the like, she likes it when the cars crash she will clap or giggle.

Makily also gets a kick out of hair.....strange hair that is. The first time I realized this she was not quite two. I was watching the home shopping network for a hair straightener. The woman had HALF her hair frizzy, curly and half straight. Each time they showed this woman Makily would crack up. Later on I met a lady with dread locks and Makily just giggled the entire time. I told her that Makily must just realllly like her. Forget it if we see a clown with a wig........she's hysterical then.

Today Makily is almost eight (b day is less than two weeks away). Makily learned to sit up when she was about (tripod sitting) 18 months old......it took her until she was two'ish to be able to sit independently indefinitely though. She can stand up with help for her balance. She can also take steps with help for balance and a little help to shift her weight. She was recently measured for a TAOS walker and we are hopeful this will be the tool to get her walking!

Makily loves to be told she is wonderful and beautiful. She will just BEAM and smile at you and will do this as long as you continue telling her how awesome she is. I have an entire speech I say to her that I will detail at the end of this. She is definitely a girly girl. She enjoys toys that have lights and music. She will beat the hell out of a toy with music to get it to play. To show affection or to get your attention Makily will grab or patt you. She also loves to be cuddled.

If you get in her way while she is watching TV she will lean over to see around you. If she still can't see though she will cry and whine UNTIL you move. Same with the TV if it's turned off she will cry until you turn it on and PUT ON HER CARTOONS. Needless to say it's rare we watch ANYTHING but cartoons when the Princess is awake.

Makily does have some stims/ticks whatever you want to call them. It's funny when she was little all her odd movements made me cringe in public. I knew people would stare and know she was different. Now those movements are just part of her and I find them endearing if you can believe that. Makily likes to shake her head back and forth no. She also LOVES her hands and has literally since birth. She holds them together a lot like you would if you were praying. This is typical in ES and I have to say when I went to the first conference I was in awe of all the other sweet kids holding their hands. She also likes to what we call "clap feet". And it's exactly what it sounds like...she claps her feet together typically if she is happy and excited or REALLY pissed off. Allen and I used to put her between us and when she would clap feet, then Allen would, then I would. It was a game that connected us since she is non verbal and at the time one of the only ways we could see that she understood us. She also likes to clap her hands in excitement.

As far as what Makily understands we aren't sure. Sometimes she surprises me and shows me what she understands and it's more than what I imagined. Honestly I won't even let myself guess what all she understands. I just know it's a lot more than most give her credit for.

My "your awesome Makily" speech:

Makily you are just gorgeous.
You have the most beautiful porcelain doll skin
Your eyes are so deep, dark and topaz blue. I've never seen anyone else with eyes quite like yours.
You have the sweetest little button nose,
rosebud lips that are just perfection.
Your hair is like pure SPUN GOLD and many women would pay lots of money to have hair as golden and beautiful as yours.
You are perfection and you always will be.

By the time I finish this speech she is grinning and patt patting me like a maniac. This kid knows what is going on around her and she understands.

You have no idea what I would do to be able to get into her brain, walk around, see what she understands, what she knows and how to help her learn more. I'd give my right arm.

I love you forever and a day Makily.

Mommy.

Perfection and Heartbreak.

Makily's school had "Our Own Games" last week. It's like the Special Olympics but it's on a smaller scale and it is for all the physically impaired classes in Marion County.

I go every year.

During the opening ceremonies they announce all the nominees for the Matthew Stoltz Shining Star award. This year Makily was nominated. I was so excited and PROUD to be wheeling her up to accept her award. Then when I read the certificate I cried.



My favorite part is "perseverance and the love of life...."

If that doesn't describe my Makily I'm not sure what does.

Makily won first place in the switch car race and second place in bowling.


See the concentration on her face?


She got a spare. :-)

Things are going pretty good here. I am still struggling with this time of year. I will be fine and then WHAM...out of no where....a cry fest. I saw the shrink last week and she said just to let myself feel however I'm feeling, let the emotion out and keep taking my meds (which I am). I also can't sleep well really unless I take a Trazodone and I have issues with having to take one every night so I don't. Then I don't sleep and I'm cranky. Ugh.

Yesterday I had an out of no where cry fest. I was holding Makily and all the sudden I kept remembering her in the NICU, all the times it's been touch and go, moments where she was in excruciating pain and there was nothing I could do but sit and rock and cry with her. So that's what I did, I held her rocked and sobbed while she watched Spongebob. I realized how lucky I was that I COULD sit and rock her.....and sob. That she is still here and that in those moments I can pick her up and hold her, kiss her, feel her hair on my face as she snuggles her head into my neck. I AM SO GRATEFUL FOR THOSE THINGS. That being said the incredible heartbreak of remembering all the things she has been through takes it toll on me. I've been going through old pictures, trying to make myself overcome it somehow. There is still a part of me that's angry at how unfair it all is/was for her but I am learning I can't change it and all I CAN do is move forward. How I wish I could make her life easier on her but I am so in awe of her and all she has overcome. She takes my breath away. She has the most perfect spirit I will ever know. She is PERFECTION.

Doesn't she just take your breath away?


On a bright note Makily has started back with private PT. She is so much stronger and is just impressing us daily with her skills. She can go from a sitting position to standing up if you just let her hold onto your thumbs for some balance. She completely supports her entire weight on her own and STANDS UP on her own. It's just amazing to see the gains she is making since stopping the Keppra. We had her measured for a TAOS walker last week and we should have that within a month.

TAOS Walker


I'm so excited and I really hope this is the tool to FINALLY get her walking. I was starting to doubt she would ever walk but the last several weeks my hope has been renewed and I can't tell you what a refreshing feeling that is.

Paradise.

I'm kinda blocked right now so I thought I'd share a song that reflects where I'm at in my head right now.

Make sure to listen to the whole song, the last couple lines of it are defining to the whole song I think.



If you have read my blog for any period of time you will know that Spring time is the hardest for me. Makily was born April 1st, her birthday is around the corner and it brings back lots of bad memories that I'd much rather forget. I have an appt with my shrink this week. My meds are definitely helping me though because typically I'm much more of a mess than I am right now this time of year.

Will write more next week.

Love to all my blog readers. Your comments and page views mean a lot to me.

Trish