Thursday, June 24, 2004 5:24 PM CDT
Please excuse this entry, it is not my typical kind
of entry at all.
Last night, we lost another angel to this horrible disease. My heart is breaking for the
Powell Family in the loss of their precious little girl Gilly. While I have never met
Gilly, or spoken very much to her mother Tine I felt as if they were a part of my large,
extended family. I cannot say why this has affected me so much today but it has. This is a
family who did all the "right" things (let me temper that by saying there is
nothing 'right' or 'wrong' with this disease), the loved their daughter more than anything
and would have gladly taken her place as she struggled on with this disease called SMA.
Gilly was their sunshine, their life just the same as my daughter is my life and my
sunshine. There are no words to be uttered in their loss. The typical things can be said
and I hope they find comfort in these such as "she is flying with the angels
now" or "she is taking her first steps" and all those things. They are true
but still the emptiness remains, Gilly is supposed to be here doing THOSE things, not in
heaven. I am thankful that she is in heaven but that does not take away the ache, and the
pain of losing something so precious.
There are so many things I do not understand about this life, there are many things that I
have no answer to. WHY must this be? Why are there parents out there who abuse their
children, why are there parents out there who do not take care of their children yet for
those of us with these special children go through this? I don't have a reason for this,
why must I watch as my daughter cannot take a step, cannot crawl, cannot sit up, cannot do
anything independantly from me?
Each child who loses their life to this disease is one child to many and it is days like
that that I HATE HATE HATE SMA.
My heart goes out to each and every family who has lost a child, and my heart goes out to
each family who faces this diagnosis.
Our children are hero's, they are lifes miracles, defying the odds.....I love my daughter
more than life itself, I wish that I could take SMA away from her, I wish I could take her
place. I pray that there is a cure for this d**n disease SOON, I wish that we would not
have to lose ONE MORE CHILD to SMA.
My prayers are with the Powells...yes, Gilly is flying with the angels and I pray that
will give some sort of comfort to Rex and Tine in the coming days, weeks, and years.
Losing a child is something that you don't "get over" ever in your life. Not a
day goes by that I do not miss Nathan or think of him and think of how unfair it is that I
have not gotten to watch him grow up with me. Please join my in prayers for Gilly's
family....you can visit Gilly's website at www.our-sma-angels.com/gilly.
Tuesday, June 15, 2004
So many things going on! We have been busy, busy,
busy! Lets see, where to begin?
We did make it to the Zoo with Zachary that Friday, it was a picture perfect day and we
had such a GREAT time! We ended up staying WAY longer than I thought we would but we were
having such a great time it was hard to leave. Lily of course got to ride on the Train,
Tram, and Carolsel (spelling is WAY off here) and had a great time doing that. Zachary was
great and he had a good time as well. I was exhausted when we got back but it was worth it
and it is nice knowing we have season passes so we can come and go when we want.
On the next Sunday we went to Riverfront Park in Louisville and had a great time there too
(just Lily and me). The weather was once again nice, not to hot so we headed off. It is so
pretty there and there are so many things to look at and see, you can walk down by the
River and watch the boats, or you can spend time watching all the water things with kids
playing in them. Lily just kept watching the water "park" part so we ended up
going up to watch the kids run around in it. It is to hard to explain how it works but it
is a neat thing! Anyway, we were watching all the kids running in and out of the water and
I asked Lily if she wanted to get a little bit wet, she said yes. So I ran her close to
the spray of water letting her arm get wet, she just laughed! So then I let her legs get
wet, she laughed again. So then I picked her up and we quickly RAN through the water but
not enough that I got to wet..she just giggled and giggled, before I knew it both of us
were sopping wet, her stroller was dripping from where I ran her through the water IN the
stroller, but we were having such a great time it didn't matter. The only thing Lily
didn't like was when she got sprayed directly in the face with the water but other than
that she LOVED it and was playing just like the other kids in the water. I put some
pictures up so you can see what I am talking about...it is cute and we had a GREAT time,
just spending the day together and hanging out.
We had a busy weekend this past weekend, we went to Mamaw and Papaw Barnetts for dinner on
Friday evening, we went to Aunt Debbie's and Uncle Donnie's for Dinner on Saturday evening
(Brian's sister and brother in law), and on Sunday we went to Drew's Birthday party (the
little boy that comes over here to play with Lily, Travis and Dena's nephew), it was his
On Thursday of last week I had my court appointment for Child Support, it went well, Brian
didn't show up (for reasons I wouldn't have enough time to get into online). He is not in
jail (I could have sent him but didn't) but I did get what I asked for which is good (as
long as he keeps up with it all), so over all it went well.
This week is a little bit hectic as well, we leave on Thurday morning for the SMA
Conference in Chicago (actually outside of Chicago) so I am getting things ready for that.
We are excited to be going again this year and I know it will be nice to be with everyone
again this year. I will miss some of my friends who are not able to attend this year but
we will still have a great time meeting with other families and of course Lily is ALWAYS
up for a trip!
HUGS to all, sorry to cut this short!!! I will update later when I have time! HUGS!
Thursday, June 3, 2004
Life is great with a big 3 year old! We have had a
nice week really, after the storms blew through! Whew...that was a rough time!
Lily did have a great birthday and the stuff just keeps rolling in! Thank you ALL for
making her birthday such a wonderful thing. She has so many wonderful things to look at
and do, we have no idea where to start with it all!
We have stayed home most of the week other than our big grocery shopping day..ugggg...but
we have been able to make it outside and enjoy the beautiful weather! On Wednesday we were
able to go out and swing and she was able to play with her 2 bubble-blowers and she had
such a great time doing that! We were going to try and go to the Zoo on Tuesday but a
storm blew in, AGAIN, and we had to cancel those plans! Today we spent pretty much the
whole day outside playing on the swing, talking, and just spending quality time together
with nothing else going on, it was nice.
She has been doing a FANTASTIC job on her computer! It is amazing to see her face full of
concentration when she is playing with it, she is so smart! We are working with the smart
nav right now and she is doing a great job with it, but it is hard right now (as with
anyone learning how to use a mouse), so mainly when she uses the Smart Nav she moves the
cursor back and forth. She has overflow issues with her hands, meaning that in one hand
when she is holding the switch (or clicker as we call it) then the other hand is doing the
smart nav (it has a little metallic looking dot that goes on the end of her finger or
straw) when she squeezes the switch it "overflows" into her other hand that is
using the smart nav so it moves the mouse. I can see her concentrating on getting the
arrow to where she wants it BUT when she clicks, she moves her hand so it doesn't work out
the way she wants it too. It will just take some practice and postioning skills before we
master it BUT over all she is doing GREAT with it and loves it. She has a Rolie Polie game
and really she just loves watching the hand (which serves as the arrow for the mouse...is
any of this making sense???) go back and forth because she knows she is moving it. She is
cute. She has 1 simple single switch game to play as well and all she has to do it click
her switch and it does something for her. Right now that is her favorite thing to play.
She will sit and stare at the computer until I set it up so I know she likes it...we just
have to continue to work with it. Anyway, I am ordering her a couple more single switch
games for her to play as well just to get her used to playing with it.
Tomorrow we are off to the Zoo for our second trip there! I will be picking up Zack, her
older half brother and we are making an afternoon of it! It is supposed to be nice so we
are going to have a good time. Hopefully I will remember to bring the camera this time and
get some shots of her. I am looking foward to it! We haven't been able to get out as much
because I am conserving money (well..I HAVE no money is more like it) and gas is so
expensive! I have limited us to 1 to 2 trips out a week so we are READY to get out of the
house and do something FUN!
HUGS to all! Lily sends BIG 3 year old hugs!!!!
Tuesday, June 1, 2004
Whew...what a BUSY weekend!
Well, lets see where do I start? On Saturday Lily, Noni, and I went to the Louisville Zoo.
It was pretty nice out, much lower humidity than it has been so I just wanted to get her
OUT of the house for a while and NOT in a mall so we headed to the Zoo. Well, the closer
we got there you could hear the Cicada's singing (screaming is more like it) so I figured
that the Zoo MUST be swamped with them. WRONG, they really didn't have many at all but
they were all around there just not in the zoo, go figure. We had a nice, but tiring time
there. We walked and walked...Noni and I were worn out but Lily had a GREAT time! I
decided for her birthday I would get us a pass because it is a great place to just walk
and see things. She loves riding the train and they Carosel. We didn't get to ride the
Carosel but we did ride the train. We walked around and had a GREAT time.
Sunday was the big BIRTHDAY day for my girl. She started off with a balloon bouquet in her
bed, then she got up and opened her first gift from me, a pretty dress for her to wear for
her birthday. She looked SO pretty in it! She also had a "Princess Party Pack"
that I had gotten her, and it was complete with a Sash (like Miss America wears) that has
princess across it (way to cute) a chair cover (that fit just perfect over her stroller
seat) that looks like a throne, a tiara (it was a soft one and CUTE), and the wand that
makes noise. She looked pretty darn cute sitting like a big girl in her chair. Everyone
arrived at 2pm (we only had a few people here...not really a HUGE party) and we ate
grilled hamburgers and hot dogs and other things. We then opened presents, she got so many
nice things! Lots of clothes and hats, and toys, and so many wonderful things. Well, right
after that came the cake....THEN it all happened! We were in the mist of tornado warnings
and we were told to seek shelter! So we pushed everyone out of the house and Obie, Lily,
and I headed over to mom and dad's to camp out the rest of the time. Travis, Dena, and
Drew (Dena's nephew) and Dena's mother all headed over too since it was pretty bad out so
Drew and Lily watched TV on the couch while we watched the storms roll in. We didn't
really get much at all but other places did expecially in Indiana. After that Travis and
them headed home but because there was supposed to be more storms with potential damage to
come in we opted to spend the night down in the basement with mom and dad since our house
doesn't really have a place to go. Nothing much happened, just alot of lightning and such
but we still stayed the night since it was late. Lily was fine but I was exhasted!!! We
made it through and were back home this morning to relax for the day! We did get to make
it outside this afternoon to relax on the swing and play with one of her presents (a
bubble blower) but really mainly it was just a lazy do nothing kind of day. It was
beautiful out too! It is supposed to be nice again tomorrow so we might just head out and
do something fun tomorrow, who knows maybe another trip to the Zoo will be in order!
My daughter is 3, it is so exciting! She is growing into such a beautiful young little
girl who is so smart and funny! She is totally amazing to me and I am so proud to be her
mother. She is constantly teaching me something new each and everyday and each day is just
a blessing and a joy to be with her. I am thankful to have her in my life that is for
I have put up some pictures of her on her birthday...ENJOY them!!!!