Friday, March 21, 2014

SIBLING SACRIFICE

After six hours of waiting for Caden to be brought back to the O.R. for his third surgery in one week, I left the pre-op area, headed towards the elevators to grab a bite to eat and got the phone call.  This call was for one of my other children.  This one was for Ethan.


As one son was being put under anesthesia, another was coughing to the point of making himself sick.  His preschool teacher, with hesitation in her voice knowing the current situation I was already in, called to tell me that Ethan was sick and needed to be picked up from school.  I was two hours away, alone, scared and officially at my breaking point.


I called my husband who took Ethan to the doctors where he was diagnosed with bronchitis.  "Oh, please...a silly little cold" is what I initially thought because compared with what Caden was going through, bronchitis in many ways is just a little cold.  But to Ethan, who was born with compromised lungs worse than Caden's, bronchitis could mean an eventual hospitalization.  It was then that a wave of mother's guilt so fierce, so enormous and so powerful, all encompassed me.  My family had become TRIAGE.

Triage, for those of you who do not vacation in hospitals, is the assignment of degrees of urgency to wounds or illnesses to decide the order of treatment of a large number of patients or casualties (Google).  I triaged my children.  Caden's needs were more important.  And they were, however it still hurt that I couldn't be there for Ethan.  I needed to be two places at once and I couldn't be.


And then there's the other one; the healthy one; what's her name?  Ah yes, Emily.  Mommy's little rock star or what I've sadly come to know as my "normal".  She is the healthiest and is right on track developmentally for her age. Because of this when she became sick for so long last winter, I blew it off as a cold that wouldn't go away.  I took her to the doctor, but never panicked or worried. She was Emily and Emily doesn't get sick like my boys. It ended up she had RSV (a severe respiratory viral infection) and required hospitalization.  She, too, needs me.


So today I write about them.  The other two.  The one's, who in many ways, sacrifice the most.  Where most take family vacations, Emily and Ethan came out to Ohio when Caden was transferred to Cincinnati Children's Hospital last spring. We took them places, but mostly they hung out at the hospital with their brother. They never once complained and I believe it was they who had the greatest impact on Caden's improving health.

They sacrifice belonging to programs, such as gymnastics, swim lessons and soccer because it hurts me that Caden can not be a part of them too. And because financially we can not afford it due to the amount of work I miss so that I can be by Caden's side when he's hospitalized.











When we do get to go places, such as the zoo, it is different for Emily and Ethan.  Everything we do runs around Caden's schedule; his feeds, his medications, his treatments.  They don't seem to have much say in "the journey" yet they are as much a part of it as Caden.


But what they sacrifice the most is time with their family, especially time with me.  Emily and Ethan are often passed around from care giver to care giver when Caden is in the hospital. They are unknowingly woken up to or picked up from school by someone other than us. They have adapted and amaze me every day at their ability to "go with the flow". They, too, are only three years old, but I feel, like Caden, they have been through more than most ten times their age.



I couldn't be there today to comfort Ethan.  I know he needed me but I wonder if I needed him more. Because of Caden's hospitalizations I have missed Emily crawling for the first time, the kids first birthday, Easter at home, saying goodbye to my dog, and countless things I can not remember because I wasn't there to see them.  I know Emily and Ethan won't remember what they have sacrificed and I know we work hard to make it up to them, but I will never forget what they have given to help their brother.



I had a lot of mother's guilt today, so when Caden was sleeping I went down to the gift shop and bought them seventy-five dollars worth of crap. To them, it will be enough.  To me, it will never replace what I miss most; my children and my family, home, together.





5 comments:

  1. Your three kids are beautiful x it's such a tough tough juggle most of time with three especially when disability is added into the mix. Mother guilt sucks too, hang in there xxxx

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  2. I too have mothers guilt. It is so hard have a special needs kiddo. I love reading stories like yours to know that I am not the only one. If you are so inclined to, you can read our story at http://xlinked1.blogspot.com Prayers are being sent to you and your beautiful family. Tracy

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    1. Thank you and I will certainly check out your blog and will share it on my page.

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  3. What a beautiful family. Thank you for being transparent and sharing your struggles. My mother had twins with the smallest being developmentally disabled. This was in 1961, so times were very different. God bless you on your journey. Give yourself some grace. God knows you are doing the best that you can for all of your children. You are modeling love and self-sacrifice to them and the world around you every day. The lives of those around you will be forever changed by your love and dedication to all your children. I know, because watching my mother every day with my special needs sibling changed my world and made it better.

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