Friday, June 01, 2012

Special Needs Spotlight: Ashlee




My daughter Ashlee was born with multiple malformations, which we had no idea of she had until she was born.  (TE Fistula, Cloaca, and Tethered chord).  Basically all of her openings to her body going in and out were all out of whack.  She had surgery at 1 day old just so she could swallow her own saliva.  She had a colostomy bag from 2 1/2 months old to 21 months old.  We flew out to Ohio for her Cloaca repair in the Colo-rectal center of the hospital.  She had her spinal cord un-tethered at 19 months old and has been hospitalized multiple times for UTI's as well as to dilate her esophagus.  Ashlee turns 5 years old next month and though she had everything "repaired" she still deals with day to day effects from it all.  She struggles with bowel control, has bad asthma and because of the surgery on her esophagus has to be very careful when eating so her food doesn't get caught on the scar tissue.  She is a fighter and very independent and taught our family much about patience and love. 

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Miggy:  Coree, you have a unique story in that you had no idea anything was wrong until your daughter was born.  However once she was born I imagine it became clear very quickly that things weren't right, so to speak.  Take us back to that day...Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Coree:  I remember very clearly how I felt that day.  At first I was confused.  I had just given birth to this BEAUTIFUL baby girl.  I was so excited to hold her and wrap her in her pink butterfly blanket and put her little pink socks on her that I had bought just for her.  When they told me she didn't have an anus I thought, "Really? That's not good, but at least it's not life threatening."  Then when they brought my baby to me to hold her very quickly before they whisked her off to the nursery and told me that she wasn't able to swallow I remember feeling like I was in a movie.  I saw the Neonatal specialist's mouth moving but I don't remember anything she said to me.  All I could think was take my baby, she is turning blue, GO FIX HER!!  

Now, I look back and feel sorry for the me that was laying in that bed helpless.  I don't wish that on anyone.  It was heart breaking and even though I knew I would love her just the same, or possibly even more, I was in shock and had a really hard time processing it all. 


Miggy:  Explain how Ashlee's special needs affect your day-to-day life?  

Coree:  From the time Ashlee was 2 1/2 months old until she was 21 months old, day-to-day life was HARD.  I cried daily.  Ashlee's colostomy was such a challenge for me.  I was changing it 2 up to 7 times/day.  Nothing was working and I was trying everything.  I felt alone most of the time because my husband was working long hours and it left me to take care of her and my son all on my own.  I had opted not to have a nurse come and help because I felt like I got it all down in the hospital before we left.  But it just got worse and worse.  

When Ashlee was only about 1 month old she choked on her bottle so badly that we had to call 911.  Shortly after that she had her first esophageal dilation.  Solids were a nightmare.  No matter how small we cut her food, she choked at almost every meal and ended up throwing everything up.  She does much better with it now but we still have to remind her to slow down and chew her food really well so she doesn't get her food caught.  Once the colostomy was gone, we had to do anal dilatations for the next year and then once that was done life was GREAT!  Aside from her choking on her food at almost every meal, we weren't dealing with anything else with her.  Once potty training started, the day to day was challenging again and still is.  We go through underwear like it's going out of style.    




Miggy:  It sounds like Ashlee has made a lot of progress.  Does Ashlee have some "problems" that are in the past?  What are your current concerns and concerns for her future?

Coree:  The most exciting thing of the past is that her colostomy is gone!!  Everything that was amiss with her little body has been "fixed" or created.  There are no more surgeries planned for her future.  Other than the daily struggle of potty training, choking and bad asthma, she is a normal little 4 year old.  As she gets older, we anticipate that the bowel management will be an issue, but pray that it won't be something that causes problems with self-esteem etc.  When she is an adult and starts a family, she may have some problems with carrying/delivering babies due to her hemi uteri.  (She has 2 half-size uterus and one set of ovaries.)  


Miggy:  How can people best approach or respond to your Ashlee? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Coree:  Ashlee is very approachable and loves people.  As we go through life my prayer is that other kids and adults (teachers etc.) will be understanding and KIND when it comes to her bowel management.  Ashlee will probably always soil her panties and may not ever have the knowledge that she is until it's too late.  I just hope that other will continue to love her and be there for her as they have been so far.



Miggy:  You were thrown into the world of special needs very suddenly and very dramatically.  What is the biggest lesson you’ve learned since becoming a special needs mom?

Coree:  I think the biggest lesson I have learned is that you can never take for granted a healthy and WHOLE body.  Whether it is yours, or your child's.  Before I was married I worked with children with special needs, more particularly my cousin with Down Syndrome.  I knew that if I was to be given a child with special needs, I would love that child so much and do everything that I could to give them the kind of life that they deserved.  I know now that God was preparing me for my sweet little Ashlee.  It was hard and there were days when I cried and cried and prayed to know what to do for her, but I know that she was sent to us for a reason and I am so thankful for that.  

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I want to thank Coree for sharing her beautiful Ashlee with us.  To see that precious baby covered in cords, turned into a silly little girl making faces brings a smile to my heart.  Also, this spotlight really had me thinking about how quickly we sometimes are to jump to judgement.  As mom we might think we know everything there is to know about something so common as potty-training, but we never really know what a person is struggling with and why.  Good stuff all around.  Thanks again Coree!


As always if you or anyone you know would like to be feature in my special needs spotlight please email me at thislittlemiggy at gmail dot com.


Have a great weekend!

3 comments:

  1. Coree is my sister in law. She was such an example to me during those hard times. She had so much love and concern for Ashlee and it was beautiful to see. Corer is strong and was a fighter for her daughters health. They are a special family!!xo

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  2. Thank you so much for spotlighting Ashlee. I am so lucky to be her mommy!!!

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  3. Coree, you're a rock star. Just cried reading this. I know God knew he could count on you!

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