Hi, my name
is Kerry Lynch! My husband, Chris and I met through friends during
college (Chris graduated from Marquette University and myself from University
of Iowa). Chris was never in a rush to get married, so I
“patiently” stuck around for what seemed life forever 😉 He was transferred to Germany for work in
fall 2007, and after I finished up nursing school in Chicago, I landed a job
and followed love to Deutschland! We lived in Munich for two years,
traveled quite a bit of Europe, made amazing friends, and we FINALLY married on
New Years Eve 2009 in a celebration with 400 of our nearest and dearest friends
and family. We moved back to Chicago and
settled back into life in the US when we found out we were pregnant in April
2010! We were ecstatic and terrified for this new chapter in life as
parents…
is Kerry Lynch! My husband, Chris and I met through friends during
college (Chris graduated from Marquette University and myself from University
of Iowa). Chris was never in a rush to get married, so I
“patiently” stuck around for what seemed life forever 😉 He was transferred to Germany for work in
fall 2007, and after I finished up nursing school in Chicago, I landed a job
and followed love to Deutschland! We lived in Munich for two years,
traveled quite a bit of Europe, made amazing friends, and we FINALLY married on
New Years Eve 2009 in a celebration with 400 of our nearest and dearest friends
and family. We moved back to Chicago and
settled back into life in the US when we found out we were pregnant in April
2010! We were ecstatic and terrified for this new chapter in life as
parents…
***************
Miggy: Can you take me back to
the day you knew your daughter was going to have special needs? Do you remember how you felt? Can you compare
those first thoughts and feelings with how you feel now?
the day you knew your daughter was going to have special needs? Do you remember how you felt? Can you compare
those first thoughts and feelings with how you feel now?
Kerry:
We found out that our daughter, Mary Cate, would have special needs on
12/08/2011… the day of her birth. I had a textbook perfect pregnancy,
and then the shock of a lifetime minutes after she was born via c-section (due
to being breech). The thoughts and feelings of that day still bring me to
tears often. I vividly remember how quiet the OR suddenly got, I remember
person after person rushing into the room and crowding around her infant
warmer. I remember the anesthesiologist grabbing a chair and firmly
telling my husband to sit down behind the curtain. I remember my ob
walking to the head of the bed and calmly telling me that they noticed some
“anomalies” on our newborn daughter. “Her fingers and toes
are fused, and her head is misshapen… though we don’t know if that was caused
by her breech positioning or something we have seen before called,
craniosynostosis.” We finally heard the words “Apert
Syndrome” about 8 hours later after a Pediatric Geneticist was called to
the hospital to see her.
We found out that our daughter, Mary Cate, would have special needs on
12/08/2011… the day of her birth. I had a textbook perfect pregnancy,
and then the shock of a lifetime minutes after she was born via c-section (due
to being breech). The thoughts and feelings of that day still bring me to
tears often. I vividly remember how quiet the OR suddenly got, I remember
person after person rushing into the room and crowding around her infant
warmer. I remember the anesthesiologist grabbing a chair and firmly
telling my husband to sit down behind the curtain. I remember my ob
walking to the head of the bed and calmly telling me that they noticed some
“anomalies” on our newborn daughter. “Her fingers and toes
are fused, and her head is misshapen… though we don’t know if that was caused
by her breech positioning or something we have seen before called,
craniosynostosis.” We finally heard the words “Apert
Syndrome” about 8 hours later after a Pediatric Geneticist was called to
the hospital to see her.
To this day I don’t know that there are
enough words in the English language to describe the roller coaster and rush of
emotions that we felt in those first 24 hours. Denial, Sadness,
Fear…absolutely paralyzing Fear, anger, pity, joy, and love. Aside from denial, there are still times when
I go through all of these emotions, however the latter of the ones mentioned,
Joy and Love, far outweigh the sadness and anger. I wrote a blog last year reliving the entire
day of her birth, if you would like to read more in depth details. Read it here.
enough words in the English language to describe the roller coaster and rush of
emotions that we felt in those first 24 hours. Denial, Sadness,
Fear…absolutely paralyzing Fear, anger, pity, joy, and love. Aside from denial, there are still times when
I go through all of these emotions, however the latter of the ones mentioned,
Joy and Love, far outweigh the sadness and anger. I wrote a blog last year reliving the entire
day of her birth, if you would like to read more in depth details. Read it here.
Miggy: Explain how Mary Cate’s specific special need affects your day-to-day life?
Kerry:
Mary Cate’s needs have definitely changed how I expected my day-to-day life to be before she was born. I had planned to be a working mom, and
was able to go back to my career for awhile after my maternity leave, however
we knew she would need 3 major surgeries in the first 15 months of her life
(syndactyly releases at 9 and 12 months and a cranial vault remodeling at 15
months). Immediate post op care is obviously intense and difficult, and
after her first surgery back in August, I put my career on hold for a while.
So far, after each syndactyly release was about a 6-8 week post op
recovery time (3 weeks of all 4 limbs casted, and then another 4-5 weeks of
dressing changes 3-5 times a day on each new finger and toe that was made.)
This was quite labor intensive physically and mentally.
Mary Cate’s needs have definitely changed how I expected my day-to-day life to be before she was born. I had planned to be a working mom, and
was able to go back to my career for awhile after my maternity leave, however
we knew she would need 3 major surgeries in the first 15 months of her life
(syndactyly releases at 9 and 12 months and a cranial vault remodeling at 15
months). Immediate post op care is obviously intense and difficult, and
after her first surgery back in August, I put my career on hold for a while.
So far, after each syndactyly release was about a 6-8 week post op
recovery time (3 weeks of all 4 limbs casted, and then another 4-5 weeks of
dressing changes 3-5 times a day on each new finger and toe that was made.)
This was quite labor intensive physically and mentally.
While not recovering from surgery, we are
involved in an Early Intervention program through our state and have physical,
occupational, developmental, and speech therapies weekly as well as a weekly
therapy class through a local university. We also have about 3-4 doctors appointments a
month with different specialist, and we spend the rest of our time as any other
typical family… lots of playtime, dance parties, smiles, laughs, singing, park
trips, etc.
involved in an Early Intervention program through our state and have physical,
occupational, developmental, and speech therapies weekly as well as a weekly
therapy class through a local university. We also have about 3-4 doctors appointments a
month with different specialist, and we spend the rest of our time as any other
typical family… lots of playtime, dance parties, smiles, laughs, singing, park
trips, etc.
Miggy: What are the biggest worries
you face for Mary Cate?
you face for Mary Cate?
Kerry:
Aside from the medical worries, my biggest concerns for Mary Cate are to
be accepted and loved for the beautiful girl she is. In a society that is
so focused on physical appearances, and not always open to physical differences,
I hope people are able to look at her unique differences as just
that… differences that make her unique and beautiful!
Aside from the medical worries, my biggest concerns for Mary Cate are to
be accepted and loved for the beautiful girl she is. In a society that is
so focused on physical appearances, and not always open to physical differences,
I hope people are able to look at her unique differences as just
that… differences that make her unique and beautiful!
Miggy: Now for a lighter
question, have you ever had any funny conversations/moments you never imagined
due to your special needs situation?
question, have you ever had any funny conversations/moments you never imagined
due to your special needs situation?
Kerry:
There were quite a few times after MC was born that my husband and I
would run into people (who did not know of her syndrome), and they would
congratulate us and say, “Oh, how is your new little girl…10 fingers, 10
toes and healthy?” We usually tried to diffuse the situation with a
chuckle and say, “well, not exactly, but she sure does have a great power
middle finger”! 🙂
There were quite a few times after MC was born that my husband and I
would run into people (who did not know of her syndrome), and they would
congratulate us and say, “Oh, how is your new little girl…10 fingers, 10
toes and healthy?” We usually tried to diffuse the situation with a
chuckle and say, “well, not exactly, but she sure does have a great power
middle finger”! 🙂
Miggy: How can people best
approach or respond to Mary Cate? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
approach or respond to Mary Cate? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
Kerry:
I hope people will approach Mary Cate in the exact same way as they
would want their child to be approached by me. After she was born, I
found myself wanting to blurt out “SHE HAS APERT SYNDROME” to every
single person we crossed paths with. I found myself “paranoid”
and thought everyone was staring. Today, I barely even notice it.
Mary Cate is almost always smiling with her big blue eyes, so people seem
to just be drawn to her beautiful soul that shines through. Some
people ask questions, some just say “Oh, God Bless you, she is
precious.” I have to say I would love if everyone would ask. I have found such a passion in educating
others on Apert Syndrome, and of course, I love nothing more than to talk about
my sweet MC 🙂
I hope people will approach Mary Cate in the exact same way as they
would want their child to be approached by me. After she was born, I
found myself wanting to blurt out “SHE HAS APERT SYNDROME” to every
single person we crossed paths with. I found myself “paranoid”
and thought everyone was staring. Today, I barely even notice it.
Mary Cate is almost always smiling with her big blue eyes, so people seem
to just be drawn to her beautiful soul that shines through. Some
people ask questions, some just say “Oh, God Bless you, she is
precious.” I have to say I would love if everyone would ask. I have found such a passion in educating
others on Apert Syndrome, and of course, I love nothing more than to talk about
my sweet MC 🙂
Miggy: What is the biggest lesson
you’ve learned since becoming a special needs mom?
you’ve learned since becoming a special needs mom?
Kerry:
That I CAN do it. In those early days and weeks I really thought
there was no possible way I was cut out for this new role, however, with the
support of my amazing husband, family and friends, I have been able to keep my
sanity, take one day at a time, and enjoy my new role. Don’t get me
wrong, I still get upset and can throw a good pity party for myself when we
have to forgoe a playdate for a therapy session, or trip to the park for a trip
to one of the million doctors we see… but all in all, I really can’t complain,
we are very blessed to have been given our special gift.
That I CAN do it. In those early days and weeks I really thought
there was no possible way I was cut out for this new role, however, with the
support of my amazing husband, family and friends, I have been able to keep my
sanity, take one day at a time, and enjoy my new role. Don’t get me
wrong, I still get upset and can throw a good pity party for myself when we
have to forgoe a playdate for a therapy session, or trip to the park for a trip
to one of the million doctors we see… but all in all, I really can’t complain,
we are very blessed to have been given our special gift.
Miggy: Tell us something you love
about your child. A special story, a personality trait or just something others
might not know.
about your child. A special story, a personality trait or just something others
might not know.
Kerry:
I love that Mary Cate somehow always manages to smile. She has
been through some incredibly massive amounts of pain, especially in the last 6
months. Of course, she responds to the pain as any human being with tears
and screams and anger, but as she sees us on the brink of losing it, she
manages a smile that melts our hearts!
I love that Mary Cate somehow always manages to smile. She has
been through some incredibly massive amounts of pain, especially in the last 6
months. Of course, she responds to the pain as any human being with tears
and screams and anger, but as she sees us on the brink of losing it, she
manages a smile that melts our hearts!
Miggy: If you could say something
to the mom who just starting on this journey of special needs, what would you
say? What would you say to yourself if you could go back in time?
to the mom who just starting on this journey of special needs, what would you
say? What would you say to yourself if you could go back in time?
Kerry:
I would say that you need to go through every stage of grief and every
emotion that you feel necessary. Don’t feel guilty for being sad and
angry at times, those feelings will not last for long, and will only help build
your confidence and love for your new miracle child. I am only 14 months
into this journey, but as of now, I would not change anything about the way we
have started this journey. YOU can do this and YOU will do this… “You
never know how STRONG you are until being STRONG is the only choice you
have.”
I would say that you need to go through every stage of grief and every
emotion that you feel necessary. Don’t feel guilty for being sad and
angry at times, those feelings will not last for long, and will only help build
your confidence and love for your new miracle child. I am only 14 months
into this journey, but as of now, I would not change anything about the way we
have started this journey. YOU can do this and YOU will do this… “You
never know how STRONG you are until being STRONG is the only choice you
have.”
***************
A big huge thanks to Kerry for sharing her beautiful Mary Cate with us. That tutu? And that flapper girl dress??? Did you just die of cuteness overload? What a darling and precious girl she is. I love what Kerry had to say about going through every stage of grief and not feeling guilty for it. It’s like little Going on a bear hunt book, “You can’t go over it, you can’t go under it, you can’t go around it, you’ve got to go through it!” You really have to go through grief to get to the other side. Kerry thanks again for sharing your sweet family with us. Feel free to read more about Mary Cate at MyMaryCate.org.
As always if you or anyone you know would like to be a part of the special needs spotlight series please email me at thislittlemiggy at gmail dot com!
Have a great weekend!
what a beautiful little girl. The last photo is gorgeous x
Beautiful post!! What a sweet girl! I have been reading your blog for quite some time, and in reading these spotlight stories, I seem lots of common themes. One thing that sticks out to me is when you about people approaching a child with special needs, is most people say they wish people would just ask questions, and I so want to do this when I see these beautiful children out and about. Especially now that my son is a little older, I want to be able to teach him that it's okay to ask questions, but I want to do it the right way. Do you have any suggestion/advice on how to ask questions to parents politely?
Hey Miss Miggy,
Thanks for giving me the opportunity to show off My Mary Cate 🙂
I love your reference to "Going on a Bear Hunt"…we read that every day and I have often thought the same thing.."gotta get through it", so you might as well get through it with alot of smiles, laughs and love, right?!?!
Give Lamp a hug from us…
xo
Mary Cate is a beautiful little girl and you, as her parents, seem just as wonderful. Thanks for sharing her with us.
SO glad to see MC here!
Miggy (I almost typed Miffy after watching 10 episodes of Miffy in a row with a sick 3 year-old). First of all, thank you for this very special "special needs spotlight" I was very intrigued because my daughter is also Mary Cate with a "c" which you don't see too often. Anyhow, I was inspired to start reading Kerry's blog; however, every time I go there, my computer freezes! I am not complaining or blaming Kerry, I just want her to know in case her blog has a virus or something (is that possible? I'm not sure I understand viruses of the computer kind). I tried on my work computer also, and the same thing happened.
Can you let her know? Thanks. And thank you for sharing the wonderful adventures of Lamp and Sparkles. It helps so much to know all the wonderful Moms out there.