First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:
First Name:
Tika
Children:
Leightyn (3) (Ds) and Bayli (9 months)
Do you work
or volunteer? IF yes, what do you do (besides being a great Mom!)?
I work from
home (or the pool, zoo, aquarium, or wherever else me and the kids might be)
doing the filing, paperwork, and answering the phones for our online business.
I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.
How many
years have you been involved with the Eastside or Extrordinary Friends Mom’s
group?
I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus
in 2009. We had a Mom’s dinner group there and a small group that met once a
month with speakers and socials for the families. We did not have any other
family or friends here locally so this is something I really wanted for us.
Melissa Skavlem and I started the group in 2010 and our first meeting was in
Feb. of that year! Over two years later and we are still going strong. This group
is my baby and I could not be prouder of what it has grown to be.
Why you like
being a part of this group?
All of the best information I have ever been given
about Down syndrome has come from other families! Now that we are almost 4
years (hard to believe my baby will be 4!!) into this journey I love being able
to share what I have learned with the families who have just started their
journey. Like I mentioned we do not have family in town and this group has
become my family. We have made many life long friends by being a part of this
group.
Best advice
for new parents of a child with T21:
BREATHE!!!! The most important thing you
can do for your new baby is love them, everything else will come in time. The
future can be scary even in the best of circumstances but especially when you
have a baby with special needs. Just focus on today and live in this moment!
You will soon see that you are stronger than you ever knew you could be. Your
child will teach you so much more than you can ever teach them so just hang on
and enjoy the ride; the ups, the downs, and all the in betweens!
Greatest joy
in having a child with T21:
The amazing connection that you have with other
families who have a child with Ds. There is something about that extra
chromosome that allows us to make an instant connection and fosters the
beginning of lifelong friendships. Leightyn is the light of my life and has
taught me to celebrate every accomplishment and to live in the moment! If the
world could only see things through Leightyn’s eyes it would be a much better
place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs
are the best thing in this entire world!!!
What is one
thing you’ve learned personally from your journey that you would like to share
with other [EXTRA]ordinary Friends?
It is easy to feel like you are not doing
enough for your child. With all of the doctors, appointments, therapy, etc. we
can all get overwhelmed at times. What your child needs most is your love and
if you are giving them that then they will be just fine. Your child will reach
their milestones when they are good and ready and not a second sooner so try
not to put pressure on them or yourselves. That sweet moment will come in time
so sit back and wait (I know easier said then done) and be ready to clap,
scream, hug, kiss, and even cry when the moment comes!
The best tip I have when it comes the
therapy is to make it fun and try to incorporate it into your everyday routine.
I am NOT saying make a point to have therapy every day, that would get
exhausting, but remember that things you already do can be therapy too J For example we had a picnic lunch it
the fort yesterday. Climbing the stairs to get in was physical therapy. Signing
and saying the colors of the different items we were eating was speech therapy.
Using her utensils to cut things up and eat, drinking from a straw, and then
cleaning up and putting things back into our bag was occupational therapy. All
three therapies in one thirty minute lunch! Use your child’s interests to make
therapy personalized and more fun for them. If they like Mickey Mouse use that
as a tool. It can be a reward or a motivator.
Random question:
If you could see 24
hours into the future what would you do with this ability? I would make sure
that I actually shower, wear something other than sweats, and put on a little
makeup when I knew I would be seeing someone I know while out running errands
LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy
happiness but it can buy clothes, shoes, and hair bows which can get expensive
when you have two little girls J
Tell Me About Your Diagnosis:
We chose not to do any prenatal testing. All of my
ultrasounds and routine screenings never indicated that anything was a concern
with our baby. I had an easy pregnancy and labor. When Leightyn was born she
was not breathing and the room quickly filled up with hospital staff as they
began to work on her. I heard one of the nurses ask another doctor, “Are you
thinking what I am thinking?” to which they replied “Yes.” All I could think
was that they thought my baby was going to die or that she was already dead.
Down syndrome was not even a thought. After what seemed like eternity, although
really only minutes, she was crying and breathing on her own. The nurse came
over to me and told me that they thought our baby might have Down syndrome
based on some of the physical characteristics they were seeing. When they
handed her to me, I knew she did, although that would not be confirmed for
several days. I fell in love with her and instantly felt the need to protect
her. This momma bear was born that day as well. She spent her first few hours
in the room with me but it soon became apparent that her heart might be a
concern and she was taken to the NICU. An echo two days later confirmed their
suspicions and made a Down syndrome diagnosis more likely. She had a complete
unbalanced AVSD. At five days old she went into heart failure and was
transferred from her birth hospital to Nationwide Childrens Hospital where she
spent another week. Sometime during that stay her diagnosis was confirmed but
we already “knew” although up to that time there was still a small sliver of
hope that we were all wrong.
The Down syndrome diagnosis came as a shock but it was not
nearly as scary as the heart defect was for me. I always say that her AVSD was
a blessing in disguise when it came to the acceptance of having a child with
Down syndrome. Suddenly Ds was not that scary at all and instead something we
could manage. The heart defect could actually kill my baby and it almost did
Down syndrome could not. It really helped me put things into perspective. Down
syndrome was a part of Leightyn but it was not all of her, she was my beautiful
new baby girl, and I loved her to pieces!
When I was 13 my youngest sister was born at 26 weeks but
measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at
birth and spent several months in the NICU. I think this was also key in me
adjusting so quickly to Down syndrome. I had been in the NICU before and had
seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow
and therapy. I had seen my little sister have many ups and downs in her first
year health wise and yet she had grown into a mostly healthy and happy child. Another
reason I was able to adjust to our new normal quickly.
It also helped that Leightyn was my first born so I did not
have another child to compare her to. She met her milestones on her timeline
and it really wasn’t too obvious to me when she was behind as a baby. She did
things when she was ready and in her own way and I didn’t know any different! The
extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.
This is not to say that it wasn’t hard at times, it was. I
cried, I worried, and I was afraid of the future. I certainly never thought I would have a child with Down syndrome
at 24, but I also never expected to have two beautiful redheaded baby girls
with light colored eyes either but I did! There are still times when I cry,
worry, and fear for the future, but that is what I have all of my amazing
friends and family for, to support me on those days. Down syndrome is a part of
our lives and we have chosen to embrace it. Today there is so much more joy and
love than there is pain and fear. Everyone has a different journey and that is
okay. This is a glimpse into mine!
From me:
Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!
Here is Tika with her beautiful girls!
No comments:
Post a Comment