Hello blog readers! My name is Jennifer. I am a wife, a mother to four
children (18, 11, 7, and 5) and two adorable cats. My oldest daughter, Gracie
(7) was born with gastroschisis. Basically, her intestines formed outside of
her body, not inside. At birth, my doctor lifted her out of stomach,
while the assisting doctor grabbed her intestines. It has been a long, hard,
stressful, rewarding road. One side note that I would like everyone to know, and just
proves to me that God really does know what he is doing. March 8, 2004 I suffered
a horrible miscarriage at 20 weeks. One of the lowest times of my life. In July
of that same year, I found out I was pregnant again. Here I was still mourning
the loss of one baby, while trying to prepare for another. Gracie was born one
month early. She came to us March 8, 2005, exactly one year to the day of my
miscarriage. There are bigger things out there that may be hard for us to see,
yet always have a way of working out.
children (18, 11, 7, and 5) and two adorable cats. My oldest daughter, Gracie
(7) was born with gastroschisis. Basically, her intestines formed outside of
her body, not inside. At birth, my doctor lifted her out of stomach,
while the assisting doctor grabbed her intestines. It has been a long, hard,
stressful, rewarding road. One side note that I would like everyone to know, and just
proves to me that God really does know what he is doing. March 8, 2004 I suffered
a horrible miscarriage at 20 weeks. One of the lowest times of my life. In July
of that same year, I found out I was pregnant again. Here I was still mourning
the loss of one baby, while trying to prepare for another. Gracie was born one
month early. She came to us March 8, 2005, exactly one year to the day of my
miscarriage. There are bigger things out there that may be hard for us to see,
yet always have a way of working out.
***************
Miggy: Can
you take me back to the day your daughter Gracie was born? Did you know
beforehand about her special needs? Do you remember how you felt?
Can you compare those first thoughts and feelings with how you feel now?
you take me back to the day your daughter Gracie was born? Did you know
beforehand about her special needs? Do you remember how you felt?
Can you compare those first thoughts and feelings with how you feel now?
Jennifer: Joe
and I found out Gracie had Gastroschisis at my 20 week ultrasound checkup. The
ultrasound tech would not talk to us, left the room as quickly as she could and
phoned my OBGYN. We were both scared and at the time were not even sure she
would make it. I felt like I was living a bad dream all over again.
and I found out Gracie had Gastroschisis at my 20 week ultrasound checkup. The
ultrasound tech would not talk to us, left the room as quickly as she could and
phoned my OBGYN. We were both scared and at the time were not even sure she
would make it. I felt like I was living a bad dream all over again.
I had to have an emergency c-section w/ Miss Gracie. I was
“suppose” to deliver at Mary Bridge Children’s Hospital, a hospital
more equipped for Gracie’s needs. However, she had other plans, came early and
I had to deliver her at my local hospital. The good Ole Doc’s took her right
out of me and put her in what looked like a body bag (I was prepared for this)
and off she went to Mary Bridge with Joe close behind. I did not know if she
was going to make it. A very sad and lonely time. At the time I did not know Gracie’s fate, but knowing her
now, seeing how stubborn and feisty she is, I cannot believe I was ever
worried. She is a fighter!
“suppose” to deliver at Mary Bridge Children’s Hospital, a hospital
more equipped for Gracie’s needs. However, she had other plans, came early and
I had to deliver her at my local hospital. The good Ole Doc’s took her right
out of me and put her in what looked like a body bag (I was prepared for this)
and off she went to Mary Bridge with Joe close behind. I did not know if she
was going to make it. A very sad and lonely time. At the time I did not know Gracie’s fate, but knowing her
now, seeing how stubborn and feisty she is, I cannot believe I was ever
worried. She is a fighter!
Gracie on Left
Miggy: Explain
how Gracie’s specific special need affects your day-to-day life? How has
this changed over the years?
how Gracie’s specific special need affects your day-to-day life? How has
this changed over the years?
Jennifer: Gracie
started her therapies (OT/PT) a few months after birth. Because her gut was so
messed up, she could not keep anything down, she skipped the crawling
stage, was a very late walker, and is developmentally delayed. She has speech
delays, and has a mild form of Aspergers. Gracie HAS to have her daily routine,
and if she does not, well… then it is not good. A quick example. While taking
her to school one day, we had to take a “detour” because they were
doing road work, Gracie flipped out, right there in her car seat she knew we
were not going the “right” way to school and it stressed her out,
stressed her out to a point where I can never comprehend.
started her therapies (OT/PT) a few months after birth. Because her gut was so
messed up, she could not keep anything down, she skipped the crawling
stage, was a very late walker, and is developmentally delayed. She has speech
delays, and has a mild form of Aspergers. Gracie HAS to have her daily routine,
and if she does not, well… then it is not good. A quick example. While taking
her to school one day, we had to take a “detour” because they were
doing road work, Gracie flipped out, right there in her car seat she knew we
were not going the “right” way to school and it stressed her out,
stressed her out to a point where I can never comprehend.
Miggy: What
are the biggest worries you face for Gracie?
are the biggest worries you face for Gracie?
Jennifer: I
worry as the years go on, Gracie will compare herself to her younger
sister, Sofia. Sofia is two years younger and right on track where she needs to
be. Gracie will be in Special Ed for quite awhile. I worry that Gracie will be
teased, I worry that Gracie will not feel she is “smart.” I worry some
random kid may make fun of Gracie, and Gracie may just sock him one.
worry as the years go on, Gracie will compare herself to her younger
sister, Sofia. Sofia is two years younger and right on track where she needs to
be. Gracie will be in Special Ed for quite awhile. I worry that Gracie will be
teased, I worry that Gracie will not feel she is “smart.” I worry some
random kid may make fun of Gracie, and Gracie may just sock him one.
Miggy: How
can people best approach or respond to your child? Is there something you wish
other people knew so as to avoid awkward or hurtful situations?
can people best approach or respond to your child? Is there something you wish
other people knew so as to avoid awkward or hurtful situations?
Jennifer: Gracie
has what I like to call “episodes.” She gets out of control if her
routine is broken, and by “out of control” I mean full on tantrums,
worse than tantrums. There is no controlling her. I would like for people to
understand sometimes “all is not what it seems.” If you see me in the
grocery store w/ Gracie, and she is having an “episode” do not think
I am a bad mother because I do not know how to control my child, there are
other issues going on that may not always be apparent to the naked eye. I do not
need to be approached, just a simple smile, a knowing look that tells me
“I have been there” is all I need.
has what I like to call “episodes.” She gets out of control if her
routine is broken, and by “out of control” I mean full on tantrums,
worse than tantrums. There is no controlling her. I would like for people to
understand sometimes “all is not what it seems.” If you see me in the
grocery store w/ Gracie, and she is having an “episode” do not think
I am a bad mother because I do not know how to control my child, there are
other issues going on that may not always be apparent to the naked eye. I do not
need to be approached, just a simple smile, a knowing look that tells me
“I have been there” is all I need.
Miggy: Tell
us something special about Gracie. A special story, a personality trait
or just something others might not know.
us something special about Gracie. A special story, a personality trait
or just something others might not know.
Jennifer: Even
though Gracie is delayed, she is very smart in other areas. Gracie is the kind
of kid who will hear a song on the radio for the first time and have it
memorized by the time the song is over. Do not be surprised if you see her on
American Idol in 9-10 years. She has a gift, just one that many people would
notice if they were not paying attention.
though Gracie is delayed, she is very smart in other areas. Gracie is the kind
of kid who will hear a song on the radio for the first time and have it
memorized by the time the song is over. Do not be surprised if you see her on
American Idol in 9-10 years. She has a gift, just one that many people would
notice if they were not paying attention.
Miggy: What
is the biggest lesson you’ve learned since becoming a special needs mom?
is the biggest lesson you’ve learned since becoming a special needs mom?
Jennifer: Patience!!!!!! Gracie has taught me how to be patient. Not everything is black and white, lots
of grey areas in there. Gracie walks to the beat of her own drum and I had to
learn to adapt… I would like to think I am a better mother because of
that… because of her, because by the GRACE of God, she is here with us. I would just like to say a special thank you to Miggy for
having your “Special Needs Spotlight.” I think it is a wonderful
thing to bring mothers of special needs kids together, and also bring awareness
to our children. Thank you!
of grey areas in there. Gracie walks to the beat of her own drum and I had to
learn to adapt… I would like to think I am a better mother because of
that… because of her, because by the GRACE of God, she is here with us. I would just like to say a special thank you to Miggy for
having your “Special Needs Spotlight.” I think it is a wonderful
thing to bring mothers of special needs kids together, and also bring awareness
to our children. Thank you!
***************
A big, huge thank you to Jennifer for sharing her beautiful Gracie with us. She is a darling girl and is lucky to have such a wonderful family as well. I love what Jennifer said about patience and how she had to adapt to Gracie… while most parents can relate, I think there is something to be said for having to really make some out-of-the-ordinary adaptions and learn patience on a whole different level. I have to say I’m also grateful for these spotlights where I learn about conditions I didn’t even know existed. I’ve had a number of spotlights like that now and I’m always grateful to have my eyes opened a little more to these rare medical conditions and the families who cope with them. It’s amazing what challenges are handed to us and it’s amazing what we can overcome! Thanks again Jennifer and hugs to that little Gracie for me.
As always if you or someone you know would like to be part of my special needs spotlight series please email me at thislittlemiggy at gmail dot com. And if you’ve sent an email and haven’t heard back, please be patient and know that sometimes I just really far behind on my emails. Life first, blog later right?
Have a great weekend!
A beautiful girl, beautiful mom, and beautiful family. I definitely understand the full on meltdowns where you wish everyone wasn't looking! She is so lucky to have you to help her. Miggy, I really look forward to your Friday posts.
My great nephew was born with this. He also came two and a half months early. Although he spent 11 weeks in Children's Hospital he hasn't had any other problems. I know that he was luckier than some. SUch a cute little girl.