Saturday, October 8, 2011

SNSS: Walking the Line

I don't know how to properly introduce today's SNSS guest blogger, to convey her awesomeness. She is Amy Hillis of the blog Transplanted Thoughts.  

Amy is an amazing mother and a wonderful, moving writer. She has also been through more tragedy than any other person I know, and somehow still finds life entertaining and amusing. 

What do I mean by tragedy? Amy has had seven children. Five of them are still living. The other two have been lost to the same rare genetic disorder that affects two out of her three still living younger children (the eldest two, from her first marriage, are now grown). 

When Amy began her blog, her youngest son David was sickly, but still alive, and those of us who read her followed along with his final days, filtered through Amy's anguished posts. He spent the last 5 months of his short life in the hospital, his mother by his side.

Theirs is obviously an intense environment, and yet Amy works hard to bring much balance and order, normalcy, joy and a sense of purpose into their lives. 

Read Amy's moving words, here, now, as she writes about the sometimes rocky relationship between Jacob, her unaffected son and his just-a-bit-younger brother, Jonathan, who is often ill:


Walking the Line - by Amy Hillis

October 10th is a big day in our house.

It's the anniversary of my middle son's liver transplant. This year marks 6 years since he was given a second chance at life. Jonathan was born with a rare genetic liver disorder called citrullinemia. The only 'cure' - a liver transplant.

The road for Jonathan has been bumpy - speech delays, IEP's, hospitalizations and illnesses that 'normal' healthy kids would never have to deal with.

His older brother doesn't see the struggles that Jonathan has endured. Jacob only sees how much attention Jonathan receives.

Speech therapy, physical therapy, occupational therapy, home-care nurses, doctor's visits and time off of school.

And to rub it in a little bit more - cupcakes and celebrations on a day that's not his birthday or Christmas.

When the boys were smaller and Jonathan had to be hospitalized, Jacob would spend his time at Grandma's house. At first he loved going to Grandma's, but as he got older he began to see it as a punishment, as an unfair consequence of his little brother being sick again.

It was during this time that Jacob started to express a lot of anger towards his little brother. He would take toys away from him, hit him and yell in his face when he was unhappy about something Jonathan had done.

It was such a trying time on so many levels. Helping Jacob to not feel lost in the shuffle became just as important as getting Jonathan well again.

Simple things, like extra cuddle time, one-on one reading time or big boy 'perks' like being able to stay up later or having first choice on movie night. These things became part of our daily routine in an attempt to curb some of the anger and hostility that Jacob felt towards Jonathan.

As the boys have gotten older, balancing the needs of each has been like walking a tightrope. Each one crying "Unfair!" when they think the other is getting the lion's share of the attention.

Fortunately the further out Jonathan gets with his transplant, the less and less time we spend in the hospital, at doctor's appointments and with therapists. Outside of the everyday quarrels that 2 boys born not quite 2 years apart encounter, most of the perceived slights happen on days like October 10th.

A day I choose to celebrate even though at not quite 7, Jonathan doesn't comprehend why it's such a special day for him and for us. We celebrate because I want both boys to honor the life that was given and the life that was lost.

It opens up discussions on the season ahead. On being thankful for what we have and living our lives to the best of our abilities.

Jacob has worked through most of his anger towards his little brother. He is shouldering the responsibility of being the 'big' brother, the one who should take care of the younger boys, with great pride.

I see an empathetic young man emerging from the shell of the little boy who once cried "Unfair!" at being the one who stood in the shadow of his little brother.

I want to thank Varda for asking me to share a piece of our story for SNSS. Sometimes the ones left at home to carry on the every day have a harder job than the ones working through the illnesses and therapies.

Giving a voice to both can do amazing things.


I am often amazed by Amy, how she carries on with life amidst the loss. She feels and acknowledges her sadness but isn't engulfed and destroyed by it, somehow manages to be there, fully present for her still living children who need their mother as much as ever.

What is most inspiring about her is her realness, and her willingness to share that with her readers. We see that she is some days sad and mad but also loving, humorous and even grateful.

Now that you have read Amy here, you are surely going to want to follow her home to her blog Transplanted Thoughts and read more of her family's story and her beautiful writing.

If you want to know about what happened to her first son with citrullinemia, who lived only 5 days as the doctors puzzled out what was wrong with him, read this post here: Introductions.

For an incredibly touching and sad moment when Amy's son talks with her about missing his baby brother David, and wants to make sure he is being looked after in heaven, read this one: Moon Talk (warning have hanky ready).

And then, because her tag line IS "Life's still funny" try this funny post about her sons' Sailor-speak (something I think all of us with boys will relate to).

Amy would also like it if you would come stalk her on Twitter, where she tweets as @transplantedx3 and on her Facebook Fan page

Thank you so much Amy, for bringing your beautiful words to SNSS today.

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