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The inspiration behind the Trisomy 13 braceletOk, I am sorry
this may be long but I have to start at the beginning...
 Sabrina
was always very much a girly girl...she loved to dress up, have her
hair done, loved to wear pink and purple, always had a purse and
gloves (sparkly gloves!) and one or two lipsticks (chapsticks) in
her pocket. She would always come up to me after she was all
"dolled" up and say "Oohhh, Ahhh" and then she'd laugh! I always
tried to make her as beautiful on the outside so that it would match
her beauty on the inside. I knew this bracelet needed to be
beautiful and sparkly....
One week, to the day, before she passed away, it was Lexi's (my
daughter) 2nd birthday party. I had planned a "Fairy" party and
Sabrina, being the oldest, was going to be the Fairy Godmother. I
found her Butterfly wings (pink, of course) and a magic wand.
Earlier, I had made several foam pink and purple Butterflies to hide
all over the yard. One of the games was to see who could find the
most butterflies. I can still see Sabrina and Doug running hand in
hand searching the trees for those butterflies! That party was one
of the last time we were all together.
The first day of school, Sept. 5, 2006, Sabrina worn a new shirt to
school. It had a picture of a beautiful fairy on it. I really didn't
"plan" any of this, it just worked out that way...While at school,
Sabrina colored a picture and brought it home to me...It was a
picture of a little angel fairy with Butterfly wings (I've included
it for you to see)...Looking back now, I can see things were lining
up for the next couple of days but at the time I was totally blind
to it all!
As some of you may already know, Sabrina passed away when I and
Brandt and Lexi were gone for the weekend. Doug had stayed home with
her as she had started to seizure on that Friday. We had gotten used
to her seizure pattern. She would always seizure for three days in a
row. The first day she would have a few, 2nd day as many as 12 or
more, then the 3rd day one or none. So Doug had insisted I go on my
trip and he would handle everything. I kissed Sabrina good-bye and
told her not to give Daddy any trouble! She just laughed at me and
said 'Bye...See Ya...and we signed "I love You" to each other. Then
I was off...
Sunday afternoon Doug had called my cell and was very upset...said
he had a "sick" feeling that something bad was going to happen to
me. I said he was being silly, not to worry, I was only spending
money! (lol) That night, around 3am I woke up and was wide
awake...if I hadn't been travelling with my friend I think I would
have just started home, anyways I decided to lay back down and at
7:15am, Monday morning, September 11, 2006, Doug phoned me to say
the most awfulest words I never thought I'd ever hear..."she's
gone...Daen, Sabrina's gone, she's dead..." (WOW! This is hard) I
will never forget that moment as long as I live...The paramedics and
med examiner placed her death at around 3-4 am that
morning...coincidence that I woke up then? I don't think so
...Brandt was with my Mom and Dad and after talking with my mom, she
said Brandt had woken up too in the middle of the night and was
crying uncontrollably for 2 hours and just kept saying, "Grandma, I
am so sad....I don't know why....I am just so sad...." and then he
fell fast asleep....again, coincidence? Not! All of us, Doug, Brandt
and Myself were given a sign that something was going to happen,
except none of us knew what to do with what we were given...
Doug and I never slept for all the days before her funeral. Those
first days without her were just...I don't really know how to put it
into words, but I know some of you will know what I mean...
Doug and I are fans of Southern Gospel music, and weeks before Doug
had bought a new DVD, the Gaither Vocal Band "Give It
Away"...Sabrina's favourite song was "Jesus Loves Me" she could sign
almost all the words and would light up every time she heard it...on
this DVD they sing a version of this song that she (and Doug) just
loved! (It was part of the music we used for her power point) We
played that DVD over and over and over again in those "days"...it
carried us through...the house was so quiet and still and the night
sky...well, it was the same...I remember, Doug would be downstairs
listening to that song over and over and over and crying....while I
was lying upstairs, crying and staring out into the sky and all the
stars...the morning of her funeral, at last minute, it hit me...one
of the songs on this DVD was called "Love can Turn the World" it has
the voices of an African children's choir singing and it says,
"...if coal can turn to diamonds, and sand can turn pearls, if a
worm can turn into a butterfly, then love can turn the world..." I
knew that was the song I wanted to end Sabrina's service with. I
know people looked at Sabrina and thought she was "different" or
looked "funny" ...like she was a "worm" (for lack of better words) I
am ashamed to say, I thought the same things when I first met
her....but she honestly was one of the most beautiful persons/
"butterflies" to ever come into my life...who would have thought of
coal, sand and worms as being the start to something so amazing...
Ok, so time passes...I knew Therese had talked about doing a
bracelet ...so one Saturday afternoon, Doug and I were sitting on
the couch watching our favourite DVD when that song comes on and it
smacks me in the face...I look at him and said I've got to email
Therese, so that's what I did...I suggested we use this concept of
diamonds, pearls and butterflies...and she asked if I would consider
doing the bracelet and I hummed and haa'd and after several weeks
agreed to do it...little did I know but the ruff draft of this
bracelet already had "diamonds" and "pearls"....
Because Sabrina was my Foster child, I couldn't put her on the TM
pages....confidentiality, you know...anyways I just now figured out
a way that we could and I was looking back at some of my initial
posts when I can across something I wrote, six weeks after Sabrina
had passed away..."Most of us, when we have children, cannot choose
who or what they are, but we chose to have her join our family and
we accepted her as she was..." Is this starting to sound familiar?
So then...what do we charge for this bracelet? Sabrina came into our
family on Sunday night, December 30, 2001. It needed to be 30
something...Doug thought it would be neat to have "13" in it somehow
for Trisomy-13...He then just threw out 33.13 I thought sure...then
got to thinking about it....Sabrina was born in the 3rd month on the
13th day, always seizured for 3 days too....33.13...so I shared this
with Therese,who then reminded me of an email from this past spring
where she had always felt that March 13 should be National
Trisomy-13 Day...and I said I thought that would be a great day as
that was Sabrina's birthday...never thinking any of it would ever
lead us to today....Bizarre?! I know...
In the design, the center crystal is slightly larger then the rest,
symbolizing for me, Mosaiciam. Sabrina had Partial T-13 mosaiciam.
It also is symbolic of the fact that she is/was what kept me
"centered". She gave my life purpose and meaning...she was my
shining star...my "super star" as we would call her when she had a
great day or accomplished something new! Remember too, there are 13
crystals in total for chromosome 13 but 13 is also Sabrina's
number...and there are also 6 sets of pearls...many of our children
are born with 6 fingers or toes...Sabrina was no exception...She was
born with an extra pinky on her right hand but had it removed when
she was a baby...the 6 sets of pearls is symbolic of those "extra
digits"...
Sabrina and I may have never been able to teach the world about
Trisomy-13 as our Doctor had hoped...but I do believe that Sabrina's
life was meant for great things...perhaps it is this bracelet, I
don't know!...It was made and inspired because of her and the love
we share...perhaps she will still be able to teach the world about
Trisomy-13 and hope...hope that one day everyone will
understand....understand that there is always hope!...That anything
is possible...
We can not make general statements about any of these kids...no two
are alike just like the butterfly...they are each affected
differently....their fate is never the same...it may be similar, but
it's never the same! Death is inevitable for everyone. Statistics
say that 1 out of 1 persons die....it's only the when and how that
is different! And it is unfair for families and the children
affected, to be clumped all together as one....because they are
individual cases with different outcomes! Just look at all the faces
of the children on the living and TM pages....they are all
different....the only similarities they share are that they are all
loved deeply and that they all are beautiful beings created by the
hands of one loving Master...a Master, Who Makes NO Mistakes!
May God bless each one of you and yours. I hope you've been able to
share in my vision for this bracelet...and although certain things
are very specific to me and my journey, I hope it somehow fits into
your journey, your story....We all have been truly blessed with our
children...And again, if I can quote Barb Farlow, when speaking of
her baby Annie, "...this little girl who seemed so broken, flawed,
and seemingly without purpose or value, was in fact perfect after
all..."
Love you all and let's continue sharing "Our Stories" and perhaps
together, we can change the perceptions of the world...
Daena
(Mother to a Princess...Sabrina ...03/13/91 -09/11/06) |
"Because Sabrina was "in foster care", her identity needs to remain
confidential.”
My name is Daena and I am the Foster Mom to Sabrina. I really don't think of
myself as a foster-mom but just as a
mother. I cared for and loved my girl very much. We cared for her for five
years. She was an important member of our family. My first child was born
just 6 weeks before Sabrina came to live with us. So I've really known
nothing else. Most of us, when we have children, cannot choose who or what
they are, but we chose to have her join our family and we accepted her as
she was.
When Sabrina first came to us she was diagnosed with Lawrence Moon Biedle
Bardet Syndrome. Not much was known on this particular syndrome and most
Doctors hadn't even heard of it. Sabrina had many
set backs...
She was non-verbal, hard of hearing (Legally deaf), was a chronic aspirator
and thus had a g-tube, she was prone to chest infections and pneumonia, she
had epilepsy, had scoliosis and a kyphosis and was considered to be
developmentally delayed (she functioned at a 5yr old level). But in addition
to all these set backs, she had a heart of gold, an amazing sense of humor,
was incredibly affectionate and sensitive. She was also very mischievous and
pesty!!
Because we never fully understood her condition, when we got her, we treated
her as a normal healthy child. She never really had a sense of "play" so as
my son grew and developed so too did she. Brandt, my son, is almost 5 and
his big thing is jumping off the coffee table onto the couch--Well you can
bet there was Sabrina right along side of him trying to jump too!! It made
me a little nervous but I thought "What the Heck! Why not!" So there they'd
be jumping like crazy fools. We really didn't give her any limits for what
she could do. Last year we bought a little quad and she was learning how to
drive it. Some times it was kind of scary but she would just sit there and
laugh her deep guttural laugh. She'd always be looking over her shoulder to
make sure all eyes were on her and then she'd take out a tree !! Some real
priceless memories. She could climb, run (well, walk fast like a shuffle),
and we were working on getting her to ride a specially adapted bike. She
fell a few times so then became gun shy!
She was learning Sign Language (She had about 300 signs that she knew but
would only use them on "Sabrina Time") She could also say a few words (Mom,
baby, hello, see ya, bye, and she just learnt to say Amen) She was very
particular about praying. You had to pray with her at every feed, every
water, each bedtime and then sometimes just because and if you forgot she'd
be right there reminding us...she'd clasp her hands and get them right in
our face and then laugh as soon as she knew that we had caught on to what
she wanted! She was a neat kid. At school, they had started using a "Pocket
Talker" with her so that she could use a voice for others to hear--sometimes
she made her own signs for certain things so this approach was going to be
more universal.
Long story short--last spring she got very very ill. She was on total life
support for about 21/2 weeks in a PICU unit. It was very unlikely that she
was going to pull thru. But she did! It was determined that she had
Influenza B and a secondary pneumonia.
Later that year, in the fall, one of her doctors from during this illness,
contacted me. She felt that Sabrina's diagnosis was incorrect. She suggested
genetic counseling. So once all the legalities were taken care of we were
able to do the blood work.
This past spring it was confirmed that indeed she did have a Partial Trisomy
13 Hypomelanosis Mosaicism. Our doctor told us that the bulk of info
available about T-13 was in German and she would need to get it translated.
She also told me that most children with a full T-13 usually die before age
1. Considering Sabrina was 15, she
was doing very well. I had no idea how fatal this syndrome can be! We had
several more test done and several more to come. Our doctor wanted to do a
study on her and present her at a conference to bring more light and
hopefully more understanding about this syndrome. I guess that day will no
longer come.
Sabrina passed away in the early morning on September 11. Just six weeks ago
yesterday. It took us all by compete shock. The night before, my husband
tucked her into bed, gave her a kiss, signed "I LOVE YOU" and said
goodnight. She responded with an "I LOVE YOU" back and said "See Ya" and she
snuggled down into her blanket and went to sleep. In the morning he went to
get her up for school and she was already gone. She showed no sign of
distress and struggle.
Med examiner said her death was due to genetic failure. I couldn't accept
that. That is until I found this site. Some of you have lost your babies in
similar fashion and so I am trying to come around to the fact that maybe
this was just her fate. It is incredibly hard some days and I find myself
searching for maybe another answer or reason. She was doing so well. This
was probably one of our best years yet. Why now?
At the beginning of this email I referred to myself as just a mother. This
is why...Sabrina's mother and I are exactly 5 years apart. She is my senior.
We have so many things in common with one another from our passions to our
line of work (we both worked in geriatrics). I always felt I was an
extension of her for her child. It's important to know that the only reason
Sabrina was in care was because her family lives in a very remote area and
are not near any substantial medical facilities and because Sabrina was so
prone to getting very sick she needed to be close to a Major Center. Her
mother chose to put her in "care" because it would hopefully prolong her
life if something came up. Anyways, when she was buried, her family chose to
put our family name along with her name on the tombstone. So, she was buried
as my child as well.
The loss is huge and deep. There has not been a day gone by that I don't cry
and think of her. Like the rest of you, I miss my child so much and would
give anything to be able to hold her, hug her, and kiss her and tell her
that everything will be alright. This has been such a journey. A journey I
hope to never take again.
I thank each one of you for listening and especially for allowing me the
opportunity to join this board. One can never truly understand what these
children mean to each one of us nor what it has meant to go thru our losses.
One of the moms, I think Annie's Mom, wrote about her precious babe..."this
little girl who seemed so broken, flawed and seemingly without purpose or
value, was in fact perfect after all". That was my girl...even with all her
flaws and misgivings she really had it all. She loved freely and accepted
everyone. She was not judgmental. She forgave within minutes. She never
carried a grudge. She had a great sense of humor. And I'd like to believe
she truly did enjoy her life regardless of what life had to offer her. She
was beautiful throughout. If only I could be more like her. I hope one day
soon I will be able to show you all just how beautiful she was. She was our
superstar!
Anyways, I feel as though I am rambling...I am just so very proud of all
that she was and had become. Feel free to ask anything about her special
gifts maybe it will give some light into others kids who may be living.
God Bless!
Daena
(Mother to a Princess...Sabrina ...03/13/91 -09/11/06)
Doug & Daena Seland ddseland@telus.net
NEW Trisomy 13 bracelet ~ Inspired by our Sabrina
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
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