Hi
Miggy, thank you for having us. My name is Christina Wooley, my husband
is Derald and our daughter is Alicen Jane. She is 9 years old now.
Alicen was born 4 months early and weighed a whopping 1 pound and 13 ounces
when she was born. She stayed in the NICU for 111 days. She has
since been diagnosed with Cerebral Palsy, Epilepsy, Plagiocephaly, Bronchial
Pulmonary Dysplasia, Chronic Pneumonia, Chronic Bronchitis, Chronic Asthma,
Legally blind, tube fed, tests C-Diff Positive, Bowel Resection due to Necrotizing
Enterocolitis while in the NICU, Retinopathy of Prematurity, the back third of
her brain did not develop, and she is wheel chair dependent, and has several
break through seizures during the day.
Miggy, thank you for having us. My name is Christina Wooley, my husband
is Derald and our daughter is Alicen Jane. She is 9 years old now.
Alicen was born 4 months early and weighed a whopping 1 pound and 13 ounces
when she was born. She stayed in the NICU for 111 days. She has
since been diagnosed with Cerebral Palsy, Epilepsy, Plagiocephaly, Bronchial
Pulmonary Dysplasia, Chronic Pneumonia, Chronic Bronchitis, Chronic Asthma,
Legally blind, tube fed, tests C-Diff Positive, Bowel Resection due to Necrotizing
Enterocolitis while in the NICU, Retinopathy of Prematurity, the back third of
her brain did not develop, and she is wheel chair dependent, and has several
break through seizures during the day.
***************
Miggy: Can you take me back to the day you knew
Alicen would have special needs? Do you remember how you felt? Can
you compare those first thoughts and feelings with how you feel now?
Alicen would have special needs? Do you remember how you felt? Can
you compare those first thoughts and feelings with how you feel now?
Christina: I had 2 miscarriages before I had Alicen so I
was considered high risk, but other than gestational diabetes there was no indications
that I would go into preterm labor or that she would have special needs.
I still at that point did not know what was going on, I mean I was only 5
months pregnant, you are not supposed to have your baby 4 months early.
Alicen was in the NICU for 111 days. I felt so much guilt; I still do to
this day. I can remember apologizing to her while she was in the
incubator in the NICU. I still apologize to her. When she was about
2 months old , the doctor in NICU told me she would have CP, he said that she
would never be able to pick up a pencil or an M&M off the floor.
Although I still have the guilty feelings all I need to do is look into her
beautiful blue eyes and somehow forget that guilt because she is so
happy. I don’t even remember feeling the “over-whelmed” feeling of her
disabilities, it was what it was I guess.
was considered high risk, but other than gestational diabetes there was no indications
that I would go into preterm labor or that she would have special needs.
I still at that point did not know what was going on, I mean I was only 5
months pregnant, you are not supposed to have your baby 4 months early.
Alicen was in the NICU for 111 days. I felt so much guilt; I still do to
this day. I can remember apologizing to her while she was in the
incubator in the NICU. I still apologize to her. When she was about
2 months old , the doctor in NICU told me she would have CP, he said that she
would never be able to pick up a pencil or an M&M off the floor.
Although I still have the guilty feelings all I need to do is look into her
beautiful blue eyes and somehow forget that guilt because she is so
happy. I don’t even remember feeling the “over-whelmed” feeling of her
disabilities, it was what it was I guess.
Miggy: I’ve come to understand that the terms
“special needs” encompasses a wide range of ideas–some children have
challenges mentally, some physically and still others are medically complex
children–it seems that Alicen has challenges in all 3 areas. That is a
lot for anyone to handle! Explain how Alicen’s needs affect your
day-to-day life?
“special needs” encompasses a wide range of ideas–some children have
challenges mentally, some physically and still others are medically complex
children–it seems that Alicen has challenges in all 3 areas. That is a
lot for anyone to handle! Explain how Alicen’s needs affect your
day-to-day life?
Christina: Alicen has an Air Way clearance vest that she
uses three times a day to keep the secretions loose in her lungs so that she
can cough it up. This keeps us home a lot. And her feeding pump is
hooked up and started at about 5:00 P.M. and runs till about 6 in the morning,
this also keeps us home a lot or we have to be home early. My husband and
I have no help/respite, so we have not been out on a “date” in probably 5
or 6 years. Please don’t think I am complaining though, because if we go
she goes too. It is hard to find time to give her a bath, as soon as she
gets home from school, she lays down for a hour or so, then physiotherapy, then
feeding. We can take these machines with us but it is a lot of work, what
if we forgot the bags for her feeding or the extension she would not be able to
eat. My husband can do the chest physiotherapy with his hands, but it is
obviously better with the machine.
uses three times a day to keep the secretions loose in her lungs so that she
can cough it up. This keeps us home a lot. And her feeding pump is
hooked up and started at about 5:00 P.M. and runs till about 6 in the morning,
this also keeps us home a lot or we have to be home early. My husband and
I have no help/respite, so we have not been out on a “date” in probably 5
or 6 years. Please don’t think I am complaining though, because if we go
she goes too. It is hard to find time to give her a bath, as soon as she
gets home from school, she lays down for a hour or so, then physiotherapy, then
feeding. We can take these machines with us but it is a lot of work, what
if we forgot the bags for her feeding or the extension she would not be able to
eat. My husband can do the chest physiotherapy with his hands, but it is
obviously better with the machine.
Miggy: In your introductory email, after a
long list of Alicen’s diagnosis’ you also said, “most importantly, she’s
perfect.” I so get that. Could you explain that
seemingly contradictory feeling to my readers?
long list of Alicen’s diagnosis’ you also said, “most importantly, she’s
perfect.” I so get that. Could you explain that
seemingly contradictory feeling to my readers?
Christina: Because Alicen is our only child. I had no
idea what to expect so the only thing I know is her. By saying she is
perfect, I guess I mean that even though she can’t see you she gives you the
biggest huge smile when you walk into the room. When she happens to cry,
which is not very often, All I have to do is sing Jesus Loves You to her and
she immediately stops crying and will smile at you. The Young and the
Restless makes her laugh. The Wheel of Fortune makes her laugh, oh and
don’t choke around her because she is sure to laugh at you. Her extremely
sunny disposition and her ability to laugh at anything is what I think makes
her prefect. She
is absolutely perfect just the way she is, I would not in a million years
change her.
idea what to expect so the only thing I know is her. By saying she is
perfect, I guess I mean that even though she can’t see you she gives you the
biggest huge smile when you walk into the room. When she happens to cry,
which is not very often, All I have to do is sing Jesus Loves You to her and
she immediately stops crying and will smile at you. The Young and the
Restless makes her laugh. The Wheel of Fortune makes her laugh, oh and
don’t choke around her because she is sure to laugh at you. Her extremely
sunny disposition and her ability to laugh at anything is what I think makes
her prefect. She
is absolutely perfect just the way she is, I would not in a million years
change her.
Miggy: What are the biggest worries you face for
Alicen?
Alicen?
Christina: I worry so much about her future, who will
take care of her if my husband or I can’t for whatever reason. Each and
every cough or gurgle, we re wondering if she will end up in the PICU for yet
another lengthy hospital stay. Then of course there is the financial side
that all parents deal with, but it seems that for disabled kiddos, it is so much
more expensive. Alicen needed a new bath tub chair, and it cost us about
500.00 just so we could safely give a bath.
take care of her if my husband or I can’t for whatever reason. Each and
every cough or gurgle, we re wondering if she will end up in the PICU for yet
another lengthy hospital stay. Then of course there is the financial side
that all parents deal with, but it seems that for disabled kiddos, it is so much
more expensive. Alicen needed a new bath tub chair, and it cost us about
500.00 just so we could safely give a bath.
Miggy: Now for a lighter question, I’m a big
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
Christina: I am always telling her “for not being able
to do much, you sure get yourself in a lot of jams.” A couple of years ago
she managed to get herself caught under the sofa. She has managed to pull Christmas presents on top of her and she has got her toe caught in the faucet in the
bathtub. Once at Wal-Mart she kicked off one of her shoes, we were
running all over the store looking for the missing shoe, finally found it on
top of a T.V. display. If she isn’t home to have her chest physiotherapy
my husband will thump her manually, I’m sure people wonder what I mean when I ask
him if he is going to thump her. Because of her C-Diff her diapers smell
terrible if there is a flare up, I am always smelling her, I asked her
pediatrician to smell her diaper, and the next time he peaked around the door
for fear I would have him smell her diaper again. Not too funny for some
people but hilarious to us. For her Ballet recital I put her dress on her
backwards but didn’t notice it until after the recital when I saw a ribbon
hanging out of her back side, thank goodness for the wheel chair harness that
hid that fact.
to do much, you sure get yourself in a lot of jams.” A couple of years ago
she managed to get herself caught under the sofa. She has managed to pull Christmas presents on top of her and she has got her toe caught in the faucet in the
bathtub. Once at Wal-Mart she kicked off one of her shoes, we were
running all over the store looking for the missing shoe, finally found it on
top of a T.V. display. If she isn’t home to have her chest physiotherapy
my husband will thump her manually, I’m sure people wonder what I mean when I ask
him if he is going to thump her. Because of her C-Diff her diapers smell
terrible if there is a flare up, I am always smelling her, I asked her
pediatrician to smell her diaper, and the next time he peaked around the door
for fear I would have him smell her diaper again. Not too funny for some
people but hilarious to us. For her Ballet recital I put her dress on her
backwards but didn’t notice it until after the recital when I saw a ribbon
hanging out of her back side, thank goodness for the wheel chair harness that
hid that fact.
Miggy: How can people best approach or respond to
Alicen? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?
Alicen? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?
Christina: Just like every other SNSL mommas, I just
wish people would come up to her and talk to her, she can’t talk back but she
will sure let you know that she knows you are talking to her. She just
loves to be included, loves to be talked to. As for her outward
appearance, she looks like an “average” 9 year old little girl, but her fancy
wheel chair really sticks out. And people staring, I realize that she is
“different than their normal” but she is our normal, if people would take a
little time and talk to her it would make a huge difference.
wish people would come up to her and talk to her, she can’t talk back but she
will sure let you know that she knows you are talking to her. She just
loves to be included, loves to be talked to. As for her outward
appearance, she looks like an “average” 9 year old little girl, but her fancy
wheel chair really sticks out. And people staring, I realize that she is
“different than their normal” but she is our normal, if people would take a
little time and talk to her it would make a huge difference.
Miggy: What is the biggest lesson you’ve learned
since becoming Alicen’s mom?
since becoming Alicen’s mom?
Christina: I can’t really put my finger on just one
lesson, there have been so many throughout this wonderful journey. God
gave me this sweet child for a reason. I have learned patience.
When her seizures (infantile spasms) started she cried absolutely
non-stop. Organization, all the paperwork involved is amazing. I
think the biggest lesson really, and I am sure every SNSL mother can
relate, is the ability to love someone so much that you never even thought it
was possible
lesson, there have been so many throughout this wonderful journey. God
gave me this sweet child for a reason. I have learned patience.
When her seizures (infantile spasms) started she cried absolutely
non-stop. Organization, all the paperwork involved is amazing. I
think the biggest lesson really, and I am sure every SNSL mother can
relate, is the ability to love someone so much that you never even thought it
was possible
***************
Thanks so much Christina for sharing your precious Alicen with us today! What a sweetheart! I love so much of what you had to say. I loved hearing about Alicen’s radiant personality and how she gets herself in a lot of jams regardless of her limitations! Ha! I’m also glad you’ve talked about some of the realities, like the financial strains. I know that can be a very difficult reality for many special needs families out there. Thanks again Christina and please give your Alicen squeezes from me.
As always if you or someone you know would like to participate in the special needs spotlight, please email me or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!
Such a sweet girl and what an amazing mom…only moms know what it means to love someone so much that you never thought it was possible..so true.
Thank you for sharing your story. I love the tutu dress. Thank God she was born to parents who love her so much.
Miss Miggy I love your special need spotlights.
I have a friend whose daughter has Kabuki syndrome and I asked her if she reads this blog and she does.
Take care x
So wonderful to meet the radiant Alicen and her amazing parents. What an awesome family.