Friday, February 08, 2013

Special Needs Spotlight: Mary Cate





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...

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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?

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.

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


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.  
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.




Miggy:  What are the biggest worries 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! 


Miggy:  Now for a lighter 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"! :)  


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?

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 :)




Miggy:  What is the biggest lesson 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.


Miggy:  Tell us something you love 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!  



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?

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."

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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! 


6 comments:

  1. what a beautiful little girl. The last photo is gorgeous x

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  2. 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?

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  3. 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

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  4. Mary Cate is a beautiful little girl and you, as her parents, seem just as wonderful. Thanks for sharing her with us.

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  5. SO glad to see MC here!

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  6. 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.

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