Being a mom of a special needs
child is, to me, bitter sweet. There has been A LOT of challenges along the
way, but the smile that Lyli puts on just makes everything so much better. Lyli
wakes up with a smile everyday and goes to sleep with a smile. I have always
said she is one tough cookie. I was diagnosed with TTTS (Twin To Twin
Transfusion Syndrome) when I was pregnant. I found out in my 1st
trimester. It was a hard journey dealing
with TTTS and on top of that I was just 15 years old. Once I had the twins,
Lyli was the only one that made it. Since birth she has gone through obstacles
in her life but has managed to surpass it all. She was diagnosed with CP
(Cerebral Palsy) at birth. Along with that she has mild scoliosis and a severe
case of Lumbar Lordosis. Lyli also has a lot of respiratory issues. I literally
have a mini hospital in her room. Our day consists of machines, meds, and extra
care. I do have 3 other children who are younger than her. Everyone always
askes me how do I do it? I don’t know how I do it myself! I love all my
children to death! I just feel that consistency and routines are what works for
me. Lyli’s schedule must be on point when it comes to her feeds and medication.
She is g-tube feed every 3 hours and medications vary throughout the day. The
day can get pretty rough, but I am grateful that I haven’t had any behavioral
issues from Lyli. She is such a happy content little girl! She loves being the
center of attention. She doesn’t talk but we communicate well with each other.
The eyes, smile, and facial expressions are all I need from her in order to
communicate her needs and wants. When I am out in about with Lyli, it can be a
bit uncomfortable for both of us. She likes to get out, but when we are around
an area with too much commotion and noise, it over stimulates her so we end up
leaving. There really isn’t much outdoor family time that we can spend with
each other. Now, the part that is uncomfortable to me is that we always have
people that stare. I understand that people can be curious but sometimes they
over do the staring. This is something that I cannot just get comfortable with.
I remember one time my family went out to dinner at a family restaurant and I
had told the host to sit us in an area off to the side by the window and she
ended up sitting us in the middle of the restaurant. Talk about how
UNCOMFORTABLE I felt. So many people stared.. Then there was the elderly couple
sitting in front of us and the guy had his back turned to us and I kid you not,
he turned around and stared at us from the moment we walked in up until our
food hit the table. I was so angry. It was so hard to not say anything, so I
ended up staring at him until he turned around. I bet he didn’t like that! But,
yea, our days are mostly spent at home not only because of the uncomfortable
feelings but also because Lyli’s immune system isn’t so great. Germs tend to
get the best of her. I sometimes feel bad because my other children don’t go
out as much as I want them to. They have been such great helpers and so
understanding! I couldn’t have asked for better children. Speaking of time,
when it comes to date nights with hubby, we don’t get much of that at all. It’s
not that we don’t have anyone to watch the kids, because we really do, but no
one can care for Lyli the way she needs to be cared for. If we do have a date
night, it lasts no longer than 3 hours and let me tell you, 3 hours isn’t
anything! So, what hubby and I usually tend to do is spend our date nights at
home, when the kids are sleeping, and watch movies. It doesn’t sound appealing
but trust me, it’s worth every moment! When you have a busy schedule like we
do, you learn to appreciate the little quality time we do get. I can’t front,
it is difficult. There are days where it is just too much and all I want to do
is cry, lay in bed, and sleep. But I don’t know what it is about Lyli. Every
time I look at her, she sparks hope in my soul. Her smile, her looks, her sweet
soul… I love her so much. I won’t and will not ever give up on her. I might
have my days, but my tantrums last a few minutes and then I jump back into
reality. I have to really thank my children, hubby, and family for being so
supportive. Without them I don’t know how I would be able to hold myself up
like I do. Why do I say I’m a labeled mommy? Because people see me differently
than any “normal” mom. It’s like people are afraid of my child because she has
disabilities and afraid to be around us. Is it because they aren’t sure about
what to say or do? Or is it because they are embarrassed to be around us? Well,
the few friends that I do have can tell you that we are AWESOME. So next time
you see us, don’t be afraid to say “Hi”
Yours Truly,
The Labeled Mommy
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