Thursday, June 7, 2012

Life Expectancy and Thoughts About More Children

Life expectancy isn't something most of us sit around thinking about. However, it's been occupying my thoughts recently as I read an e-mail about one of Sadie's Aicardi sisters passing away. In the past six months, at least seven girls with Aicardi Syndrome have passed away. Some older (generally-speaking, 30 years +) and some younger. Most recently, we lost little Ava who was 5 years old. Her mother wrote a very moving and poignant blog post about Ava's final days. (WARNING - have tissues handy.)

As hard as it is for us to grasp, we know Sadie will have a shortened life expectancy. Meaning both Adin and I will likely outlive our daughter. I believe the most recent data shows that the average life span for girls with Aicardi Syndrome as 10 years, median of 18 years. This got me thinking - how do you prepare for such grief? Some parents write bucket lists, others pray for miracles, some just try to put it out of their minds. Honestly, we don't spend a lot of time dwelling on Sadie's life span, because quite simply, it makes us both too sad.

Reading these emails about Aicardi girls who have passed is always an emotional blow. Something you've worked so hard to put in the back of your head and ignore, again comes to the forefront.

Many parents of medically fragile children are all too familiar with calling 911 or visiting an emergency room. Luckily, we've only had to call 911 for Sadie once in her life. Paramedics rushing through the house at 2 am is quite scary. Sadie has been in the ER a number of times in her short life - at one point in time, Sadie was a frequent visitor to the ER at Children's Memorial Hospital. Luckily (or unluckily) some of the ER nurses and doctors even know her there. But, taking her to another ER frightens me quite a bit, especially after reading this article.

Along those same lines, we get asked occasionally about our thoughts on having more children. Now, we expect and understand when those questions come from well-meaning family members, but it always takes me aback a little when it comes from someone with whom we are less familiar- like the dental hygienist.

Although I do understand people's interest in wanting to know our plan...so here it is.

Before Sadie was born, we always imagined that we'd have more than one child.  After Sadie's birth - even before her diagnosis - I wasn't so sure. Parenting is difficult. Parenting a child with a severe neurological condition and special needs is particularly difficult. The amount of time spent in caring for Sadie is extremely high, so involved that I simply cannot imagine having to care for a second or third child. Additionally, Adin and I often speak about how we want to have time to share with eachother as well (after all, we married eachother for a reason). So, Sadie will likely be our only child.

I know many who may disagree with this decision, but it is an intensely personal one, and one that we make alone. And after all, God may have a different plan, right? And yes, there is a bit of grief that we experience knowing that we may never have a typically-developing child. But, we consider ourselves blessed that we have Sadie.

As the parent who wrote the bucket list for her daughter said, "We could go around and cry all day long or we can enjoy the time we have with her." We choose the latter.

13 comments:

  1. Oh Cathy, my heart bleeds for you. I pray for your family every day. Enjoy every minute with your beautiful angel. God bless you and Adin. It can't be easy taking care of a child with special needs. Sadie is so blessed to have such wonderful, loving parents.

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  2. What a wonderful post. Thanks for being so open with your thoughts and sharing such personal details. We are all so lucky to be apart of the McCann family journey. xoxo

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  3. Very well put, Cathy. Earlier this year, my friend, Autumn, died unexpectedly just 1 day after delivering her second child. She was only 31. Everyone needs that reminder to enjoy the people in your life, while you have them - in that moment. It's too futile to try to avoid fate or make plans that are beyond our control. This moment, and our heart's openness to live it fully, is all we can really control. Thank you for reminding us.

    And, as for Adin (Aidin, Aye-dan,Eiden - ha ha) and your future childbearing plans, your friends will support and respect your decision always.

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    1. Why do our children have a short life span?

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  4. "Always kiss your children goodnight - even if they're already asleep." ~H. Jackson Brown, Jr.

    Life and Love is precious, thank you for always reminding me to never take it for granted. Your words are truly inspirational on so many levels, Cathy.

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  5. I just found your blog through a search...thank you for sharing mine! I very much enjoy reading about your family and your special angel. Please keep posting! Praying for you all.

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  6. I thank you for being so open and honest I found you via the Love That Max link party and glad I did. I cannot imagine what you go through daily, but will keep you in my prayers. Amee

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  7. We also have a daughter with Aicardi syndrome who will be two next February and like you life expectancy is something that preys on our mind.

    On one hand we don't want to dwell on it as each aicardi child is so different and life expectancy could be anything from a few years to over thirty years. On the other hand we worry about our daugther's quality of life (especially when sick) and ask ourselves how long do we really want her to endure such a life?

    On the question of having more children as you rightly say this is a very personal decision and certainly not one that anyone can tell you whether your right or wrong. I will say that our daughter was our second child and her four year old brother gives us all the strength we need to keep going and his unrestrained love for his little sister is truly touching. Whether we would have had a second child if our daughter had been our first I cannot honestly say.

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  8. I HAD AN AICARDI CHILD,ANOUK BELL. SHE WAS VERY SPECIAL TO US AND SHE DIED ON24 MARCH 2009,AGED 16. WHEN SHE WAS DIAGNOSED, DOCTORS ENCOURAGED ME TO HAVE ANUTHER ONE RIGHT AWAY. I COULD NOT IMAGINE ANOTHER ONE SINCE ALL MY EMOTIONS WERE TIED UP WITH ANOUK. I HAD A HEALTHY LITTLE GIRL THE FOLLOWING YEAR(24 MAY1994). IT WAS HARD TO BOND WITH ZARA BUT I HAD RELIABLE HELP AND AGREAT SUPPORT SYSTEM FROM FAMILY -AND I TAUGHT.TODAY I REALISE THAT IT WAS THE RIGHT THING TO DO, ALTHOUGH IT DID NOT MAKE SENSE AT THE TIME.ZARA KNOWS THAT SHE OWES HER LIFE TO ANOUK FOR WE WERE ONLY GOING TO HAVE ONE CHILD. ALTHOUGH THE PAIN OF OUR LOSS IS STILL FELT,WE HAD SOMEONE ELSE TO LIVE FOR. ZARA TODAY IS A 19 YEAR OLD MEDICAL STUDENT AND WE HAVE THE MOST AMAZING RELATIONSHIP WITH HER. DO NOT GIVE UP HAVING ANOTHER CHILD.FAZILET BELL SOUTH AFRICA. faziletbell@gmail.com

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  9. These stories are truly beautiful... I also have a daughter with aicardi syndrome she is 13 she is amazing and beautiful . Hannah has taught us so much about life. She is our fourth child her siblings love her very much. They have alot of compassion for people as a result of their sister. We also have a fifth child. We are so very glad to have him .He is a breathe of fresh air. When he was newborn it was really hard but kids grow fast. He also adores his sister very much. From the beginning he has loved her however she took some warming up after all she was the baby of the family. It didnt take long for her to fall in love with her little brother. They enjoy watching movies together and listening to stories. I look forward to each new day!

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  10. I HAVE ALL THOSE SAME FEELINGS. MY ARIANA IS 11,HAS AICARDI AND ITS BEEN ROUGH...I BUT I HAVE LEARNED ALOT,CHANGED ALOT AND LOVE MY BABY SO MUCH. I TOLD MY OLDER DAUGHTER THE TRUTH ABOUT EVERYTHING AND SHES BEEN TO MANY ER VISITS,DR APPTS,HOSPITAL DINNERS AND THAT WHEN ARIANA IS GONE WE WILL BE SAD,BUT NOW SHES HERE AND WE ARE JUST GOONNA LOVE HER

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  11. I have a granddaughter qwho has Aicardi She will be 14 inJune . She is loved very much by all the family. Her mom and dad have lots of support as ava is not able to do anything by herself. she is completely dependent on family (mostly) mom to take care of her needs. She does have a special toy that she can find no matter where is is. She is very special but as her grandma I worry about her quality of life. she seems happy but she cannot tell us that. She is beautiful and will give me a kiss.

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  12. I will pray for all of these beautiful children. I will pray for all of the special needs families & caretakers.I WILL PUT MY HANDS& HEART TOGETHER THAT SOMEDAY THEY DON'T HAVE TO WORRY

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