Do you have a 'very Special Child'?
Then you might be interested in my TAILS!!
I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.
Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.
Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!
I have done this for 2 years, to every shirt she has, and it's very easy!!!
For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.
Click here for DETAILS and PICTURES.
Yesterday an envelope came home from school addressed to me from Maggie's 4th grade teacher. I didn't expect to read the enclosed paper and cry!
But, that's what I did at 3:30 yesterday afternoon. I cried tears of sorrow for what my 3 daughters went through 4 years ago. And I cried tears of joy and pride for how amazing they have turned out here 'on the other side'.
Maggie's teacher gave the class a topic to write about - "Someone in your family who has taught you a lesson."
This envelope contained a copy of Maggie's heart-wrenching essay. Maggie, our middle child, is dramatic, sensitive, emotional, adorable and has a heart bigger than the sun,
This month marks 4 years since Suzy's tragedy. (I can not believe it's been 4 years!!)
It's the perfect time to share what Maggie wrote:
* * * * * * * * *
Someone in my family who has taught me a lot would be my little sister, Suzy. She got sick 3 years ago. When I say sick, I mean she got ensephilitis and is now severly handicap. Suzy is 4 but acts like a baby and can't walk, talk, or feed herself. It feels like we are starting all over. The reason why Suzy has taught me the most is because she has taught me patients, how to be more loving and caring, and even a lesson on how to be a better mother when I am one.
I can still remember the very day when it happened. I was in kindergarten at the time. It was around 8:00 at night after my mom put Suzy to bed. All of a sudden there was a coughing noise along with a choking sound. My parents ran upstairs. The next thing I heard was the saddest moment of my whole life, an ambulance! There I sat looking at my mom cry and everyone else crying while my little Suzy was being carried on a strecher in the ambulance with my mom.
My whole life changed from then on. Mom and Suzy stayed at the hospital for 4 months straight. Once the doctors said they could come home I was excited because the day it happened I thought she was dying.
Suzy had changed forever. From then on forward she's getting better and better everyday. Now, even though Suzy is not normal she will always be my best friend and the best little sister anyone could ever, ever, ever want.
I LOVE YOU SUZY!
To my faithful followers - I apologize for not writing an update in so long!!!
I really haven't had much to say.
I know - totally surprising!
Suzy is doing so well.
No major sicknesses!!!
She's eating really well.
Sleeping fairly well.
And is filled with joy and smiles most days!
She is in the same special ed preschool class that she was in last year and she's LOVIN' it.
Her 3 teachers are SAINTS! And the 8 other children are her buddies.
I roll her into her classroom each morning, the children all shout, "It's Suzy!!!" and she starts to giggle.
It's truly a sight that will make your heart smile.
The kids are so good to her.They are all much higher functioning than Suzy - they all walk and sort of talk. And 2 of the girls are even 'normal' and have been picked to be in the class as "role models".
Suzy is kind of like "the class pet"......
She's everyone's 'darling' and they all take such great care of her. They include her in all that they do.
It's Heaven On Earth
Suzy has a BEST FRIEND!!!
Her name is Zoey, and she is one of the 'normal' kids in her classroom. Zoey even tells her mom that Suzy is her very best friend. Wherever Suzy is in school you will find Zoey next to her. Zoey rubs and kisses her all morning. And if you mention Zoey's name to Suzy here at home, she will laugh and smile. They even look alike. And Zoey's mom arranged for the girls to have a play date at Chick Filet last month. Sometimes Zoey acts like Suzy is her baby; but sometimes she acts like Suzy is just the same as her.
I thank God for Zoey. (she is in the picture above).
I also want to give a 'shout out' to our friend, Allison. She is the sweetest soul. Allison sees us as school each morning before going to middle school and always chats with Suzy. We love her.
Suzy has been doing very well riding a specially adapted tricycle. We borrow it from our physical therapist every now and then, and she rides it around our neighborhood. She is starting to peddle it all by herself! I posted a video of that. "VIDEO-Learning To Ride"
Suzy's cognitive awareness has also increased!
She is much more 'in tune' with everything going on around her.
Example - I can no longer get Gracie and Maggie a frappaccino at Starbuck's without Suzy having a FIT !! You can't hide anything like that from Suzy (like milkshakes from ChickFilet or Blizzards from DQ). If Suzy is in the car then she KNOWS they have one and she WANTS ONE!!! She will fuss until she gets some. So now I have to order one for Suzy, too. The problem is - she can't hold it or drink it by herself!!
So my other sweet girls patiently give her licks and spoonfuls.
She also lets you know if she doesn't want to stop her favorite activities. Like taking a bath with Maggie. When I reach in the tub to get her from Maggie she will yell at me!! or when I take her out of the toyroom to go to bed she will also yell at me.
Do I mind these things? NOPE!! Not one bit!!!! It's like little daily Christmas presents to me.It shows me just how much is going on in her precious brain.
We are totally ready and very excited about Christmas this year. We feel very blessed and so grateful.
We pray that your family has a joyous Hanukkah or Christmas.
I posted some new pictures under Nov/Dec. pics.
Thanks for your continued love and support.
Totally Awesome -
Suzy loves her KidWalk Walker. She has had it for a year, but it's only been the last 6 months that she has loved being in it.
However; she doesn't actually 'walk' in it - she doesn't know how to propel herself forward - we have to gently push her and she will move her feet -
Something just "clicked" with Suzy, and last night she started WALKING in it ALL BY HERSELF!!!!!!
She was in her Walker in the cul-de-sac with her sisters after dinner (like we normally do);
and we were calling her to "Come to us, Suzy", (think puppy dog training);
and all of a sudden SHE STARTED WALKING!!!!!
She was SO proud of herself. It was obvious that she KNEW what she was finally doing.
Love. this. girl. SO. MUCH.
It's moments like this when I remember that she is 'supposed to be a vegetable.'
Well, folks, this little cucumber has a lot of living to do!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Check out the 1 minute video posted under:
"All By Myself"
Life is good.
i give up.
i have fought this "battle" for 3 years ~ and i have nothing left to give.
i have run out of ideas.
i have run out of energy.
i am not able to fix my daughter.
i guess the doctors were right:
"She has significant brain damage and she will never talk, or crawl, or feed herself, or color, or get married or dance....."
i must face the fact that her progress these past 3 years has been only 'minimal.'
this is her destiny......
but my soul hurts for her.
i would fix her if i could.
i would do ANYTHING for her.
i adore her.
i love her unconditionally.
and i ACCEPT HER!
but what else can i do??
i do not have any trips planned. amazing. i can't believe it. i have no alternative treatments or intensive therapies in our schedule. i don't really know what to do........
i think it's time for me to stop trying to fix her.
Who knows? Maybe she is already fixed.
Her spirit is glorious.
Her smile is contagious.
Her laughter is musical.
Maybe she knows more than the rest of us.
Maybe she knows something we don't.
Maybe she met Jesus when she was laying in the hospital hovering between life and death.
Maybe she is still here with us because she has a mission ~
she is to be our teacher ~
she is supposed to teach us how to love unconditionally,
and have unwaivering faith,
and how to be patient,
and how to smile even when times are tough.
i CHOOSE to believe that this is the case.
the alternative is heartbreaking.
my sweet friend, Lynnette, reminded me not so long ago, "Whitney, remember, it's about the journey NOT the destination."
maybe it's time I change my focus and just enjoy each day that we get to spend together, and stop trying to control Suzy's abilities/disabilities.....
i still believe in Suzy.
and i still want her to grow, develop and improve her functions which will improve her quality of life.
i'm just removing the enormous pressure i had placed on us.
we will continue with her amazing PT 3 times a week.
we will continue with her awesome ST 2 times a week.
she will continue to go to preschool every day with her phenomenal teachers.
and guess what she did today in PT with Karen? she reached into a box of beans and picked up a toy Batman. (took her 5 minutes, but she did it!)
Karen said, "give Batman a kiss."
And SHE DID!! She put it up to her lips and licked it. !!!!!!!
and then she giggled and giggled.
how totally amazing is that?!?!?!?!?!?!?!
She is my hero.