SNSS: The Bucket and the Mandrake

Today, SNSS is going hyper-local. My guest today, Michaela Searfoorce, is someone I actually met first in real life and not the bloggosphere. (What? It happens!) She lives in my neighborhood and our sons were in the same special needs "challenger division" basketball league. 

Furthermore Michaela is a major force in the New York City Upper West Side Special Needs Parenting community. I had found out about the basketball league at one of the regular monthly informational meetings that Michaela organizes.

Her blog The Foorce (a fun play on her name) is mostly focused on providing support and resources for our local New York City special needs community, but is also a place where Michaela shares some of her personal story from time to time.

She is the mother of three children: 11 year-old James and his two young sisters. James has a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction and ADD.

Chances are, if you have a special needs child(ren), they have at least something in common with James. I can tell you firsthand he is a delightful boy with a huge heart and I was always happy when he and Jake were paired up together in basketball practice.

Read on, now, for a glimpse into Michaela's wonderful family, a pair of life-slices that add up to a beautiful thought:

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The Bucket and the Mandrake: Two Small Stories, One Big Lesson - by Michaela Searfoorce

"Mom, help!"

James looked tearfully after the preschooler who was sauntering away with his bucket. Though he is 11 years old now, James is unable to stick up for himself in many circumstances, even with children half his size and age.

After asking politely (meekly, in my opinion) for his bucket back, the boy who grabbed it said "no" and walked over to the other sand area, leaving James to dig around pathetically in the sand with his shovel. I could tell he was upset, both frustrated and embarrassed by his fear of confronting the other child.

"Give James his bucket back right now!"

No, that wasn't me. It was my 2 yr old daughter, jumping down from a nearby jungle gym and charging after the offender. She reached him and ripped the bucket from his hand, yelling "Leave my brother alone. That's his bucket!"

The boy stood there, mouth hanging open. So did I. My daughter marched the bucket back to James and proudly announced, "Here James. Here is your bucket! It's okay!" James wiped his eyes and said gratefully, "Thanks, Margaret."

~~~

"Mom, help! No - don't do it!"

Flash forward to the Harry Potter exhibit in Times Square. I had decided to brave the trip alone while Ryan was at work, and as a consequence was having trouble keeping as close an eye on both James and my 2 year old as I would've liked.

The exhibit was a cool collection of trinkets, costumes and props from the Harry Potter series. James has read all of the books, seen all of the movies, and was even Harry Potter for Halloween last year - I fully expected him to be in love with the place. And he was, aside from some initial anxiety when the sorting hat was placed on peoples heads and loudly started sorting them into Hogwarts houses.

About halfway through the exhibit, Margaret and I were standing by the mandrakes while she eagerly pulled each model plant out of the soil to hear it screech.

For those of you who are not Potter fan(atic)s, mandrakes are small, ugly potted creatures that live in the soil - when you pull them out they emit a cry that renders a person immobilized. Full grown mandrake cries will kill you (don't worry, I'm not ruining a big part of any book!), and in the books students would wear special head gear in order to protect themselves.

So when James saw Margaret across the room, gleefully pulling mandrakes from the soil to listen to their cries, he flew into a total panic. He ran to the far side of the exhibit (self preservation) while screaming, "No! No Margaret! Stop touching them! Mom! Help Margaret! Don't do it, Margaret!"

Everyone froze at the sound of the screams. Tourists young and old looked around the room for "Mom," probably wondering whether this was part of the show or if this large pre-teen was actually terrified of a fake potted plant.

I rushed over and explained to James that they weren't real and that it was okay to pull the mandrakes out, but he wouldn't hear of it. He remained hysterical until we moved Margaret out of danger.

Five minutes later they were both throwing quaffles at quidditch posts. (I don't have time to explain everything about Harry Potter here!)

~~~

I know that some day Margaret will bear the brunt of the "hero responsibility." At 2 years old she already looks out for James in a way that makes me proud.

But, it is my most sincere hope that when she's older she will still be able to remember these times when James bravely tried to come to her rescue as well.

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Reading this lovely post, I found myself once again wishing I had somehow been magically able to provide Jake with a little sister to look up to and after him.
 
And then I read some of Michaela's "Patience and Foortitude" posts on her blog about the challenges of life with a big special needs kid, a toddler and a baby... and I rethought that one.

Having had a little glimpse into Michaela's family here, you should definitely follow her home to her blog, The Foorce, to read more. If you are New York City local, read it all, there's some great resources there. If you're from elsewhere and want to skip the local stuff,, the posts in the "General" category are where you'll find the personal, family ones. 

Start here with this one, about a particularly exhausting evening: Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex  (and yes, I've finally found someone who makes my often long post titles seem pithy).

Also, try this post about a milestone - riding a Ferris Wheel - that may seem small to some, but we special needs parents know better.  Or this one, a letter of appreciation on James's 11th birthday. 

Finally, if you want further proof of what a supermom Michaela is, read this pair of posts about James's heartbreaking massive "poop incident" at his school (due to his medical issues) and how his mom talked to his inclusion class about it (and answered other questions about James' differences) so that he would be safe retuning to the school, afterward.

Thank you so much, Michaela, for sharing your wonderful son James, and the rest of your lovely, special family with us today.


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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:

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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.

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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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