Showing posts with label book review. Show all posts
Showing posts with label book review. Show all posts

Wednesday, October 9, 2013

"Sun Shine Down" by Gillian Marchenko. Reviewed by Stephanie Sumulong

"The sun will shine again" was a quote that author Gillian Marchenko cut out and taped up in her home.  It came from an email a friend sent to her shortly after the birth of her third child, Polina (Polly for short), who was diagnosed with Down syndrome.

Gillian's memoir chronicles her journey to acceptance of her new role in the world of special needs, Down syndrome, Early Intervention, and therapy appointments.  She also realizes along the way that her daughter is at first a baby, not a diagnosis.

What I found most interesting about Gillian's memoir is that she had the added perspective of giving birth to her daughter in the Ukraine where people with disabilities essentially do not exist.  The beginning of the book tells of a cold pediatrician that basically tells Gillian and her husband that she will understand if they want to leave the hospital without their child and sign their rights away.  This was in 2006 and that scared me:  the mind set in many Eastern European countries is still this way.

Gillian also bares her soul by the telling readers how she coped with her new daughter's existence and while it wasn't the way I personally coped, I know many moms have coped in the same way in order to shut off their feelings and the depression that can often follow an at birth diagnosis that no one was expecting.  What I liked most about this memoir is that she was so honest and upfront about her feelings; there was no hiding behind the words.  It is a very raw and emotional memoir and it is very real.

Eventually the sun would shine down again and the realization that Polly is just like her other daughters (and, as her husband Sergei says, "looks just like a Marchenko") would sink in for Gillian, which happens for most other parents who have a child with Down syndrome.

This is definitely worth a read by all parents, not just those who have a child/children with Down syndrome.  I think Gillian's thoughts about trying to deal with a situation she didn't ask for and trying to maintain an outward happy persona are things that many people can relate to.  Two thumbs up!

Friday, July 19, 2013

"Up Syndrome" by Megan Abner. Reviewed by Stephanie Sumulong

Recently I received a copy of a new book called "Up Syndrome:  It's all about the attitude" by Megan Abner.  I was excited to get my hands on this book for one main reason--an adult with Down syndrome wrote it!  Yes, you read that correctly:  a 30 year old woman named Megan who has Down syndrome wrote this book.  These are her words, thoughts, and feelings about what it means to have Down syndrome.

First it should be stated that the book is unedited--a friend of hers took her journals and typed everything out the way she wrote it.  Therefore punctuation, word usage, and grammar are not changed or fixed in any way.  That didn't bother me; in fact I preferred it that way because it really made me think about Megan and how she sees life.

Secondly it must be noted that Megan doesn't use the words Down syndrome; she believes that "down" makes it sound extremely negative and so instead she uses Up syndrome and she encourages others, especially her family, to do so too.

Thirdly, while this book is written by a person with Down syndrome and she does tackle some subjects related to Ds, the message from this book applies to anyone.  Life is all about your attitude and how you want to live it.  It's clear that her attitude about enjoying life and its challenges has made her the person she is today.  She says as much on pg. 4:  "It's all about what you think of yourself, there's nothing else, just put yourself into it.  Don't let anybody make you feel inferior".  I think that's a message that anyone can relate to, regardless of their connection to Down syndrome.

If I could sum up this book in one word, it would be pride.  Megan has a lot of pride about who she is and what she does.  She says simply how smart she is, how much she enjoys driving, how she loves putting words onto paper, how fantastic she feels about writing a book, how much she loves her jobs.  I don't think I've personally ever felt that way about myself and even if I did, I never said it aloud.  She not only says it, but she means every word of it and wrote every word of it down.  Her family seems to take a lot of pride in Megan too, based on the real relationships she has with her extended family--serving as maid of honor for her cousin's wedding--and how they treat her--she goes on adult vacations with her family, drinks beer and wine, and discusses hard topics like her grandfather being ill and wishing to see her before he dies.

When Megan discussed going to school, I was worried about her experience.  I realize that Megan is more my contemporary than my child's; she is nearly 30 years old and I'm 35--when she was in middle school, I was attending high school.  But I'm also a realist and I know that public schools and special education programs still have many miles to go before they truly educate everyone and educate them well.  It definitely saddened me when she talked about not having any friends and no one wanting to sit with her at lunch.  I am terrified of sending Owen to elementary school.  I am so worried that with his lack of talking and communication he will be limited in who will play with him or want to be his friend.  When someone like Megan, who writes and communicates well, has problems making friends, I have to wonder what will become of my boy.  And worse, will he ever be able to tell me if someone made fun of him or excluded him?

One of my favorite parts of her book is what she wants to tell every pregnant woman about having a child (any child, not just those with Up syndrome, as she says):  she wants them to know what her mother did for her (like homeschooling her in middle and high school when it became clear that the district wasn't doing its job), talk to these women about her thought process and how smart she is, and give kids an education.   She hopes that parents will teach their children to have open minds which would make people look at Up syndrome most positively.  An open mind about people who are different than you..........what a wonderful concept!

This book for me held a promise that even if someone has a disability s/he can still do great things.  Owen will soon be 4--too soon to tell what his future will be.  But I think the best thing to know as his parent is that he DOES have a future--it may not be the one that I dreamed about before he was born, but it will be HIS, whatever he decides to do or to be.  Megan states that "people with different abilities can make the world fabulous"; she's doing it her way and I know Owen will do it too.


You can get your own copy of this fantastic book here

Reviewed by: Stephanie Sumulong
Blog:  The Sumulong 3
Page:  Facebook: The Sumulong 3

Friday, July 13, 2012

From Grief to Celebration by Gary Bender, Reviewed by Megan Landmeier

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome by Gary Bender, Reviewed by Megan Landmeier
This post first appeared at My Stubborn Little Miss.

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When Gary (Margaret) Bender emailed me and asked me if I'd like to give away a copy of her book on my blog, I was excited.  I'd read a few reviews on this site, and although I contribute here, I hadn't picked up Gary's book yet.

What first struck me about From Grief to Celebration was the fact that Gary is the parent of an older child with Down syndrome; her daughter Alex was 17 at the time the book was written.  While I loved Bloom and A Good and Perfect Gift, both books were written by parents of younger children.  Gary offers the distance and perspective years can bring.  The book is a fast read, and I read it on a flight as Ellie napped in the Bjorn.

From Grief to Celebration is based around ten verbs that Gary and her family contributed in processing Alex's Down syndrome diagnosis.  I appreciated Gary's story of receiving the news that Alex was not going to be the baby she expected, although that story is now a familiar one.  Gary's writing style is tight, and she gets to the point without becoming dry.  Her descriptions of advocating for Alex encouraged me, because I'm grateful for moms who have gone ahead of me to promote inclusion.

My favorite passage of the book was something that surprised me.  While I desire for Ellie to be included with her typical peers, I want her to find her place in the special needs community as well.  I want her to thrive.  In the chapter on "Include," Gary writes:

"What I didn't believe at the time, but know now, is that Alex shines when she's with other people with disabilities.  She can interact equally, both socially and competitively.  She feels genuine friendship, pride, and success."

Another mom of a child with special needs that I know has mentioned her daughter having "many circles," and I think Alex's social life as described by Gary reflects a bit of this.  School, general education, special education, Special Olympics, our local Down syndrome group - I want Ellie to find her place in each.

I would recommend From Grief to Celebration to any parent of a child with Down syndrome looking for a memoir that takes them farther down the road, beyond early childhood and into adolescence.

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Megan Landmeier
Blog: My Stubborn Little Miss

Saturday, April 28, 2012

"Bloom" by Kelle Hampton, Reviewed by Megan Landmeier

This post was originally published by Megan Landmeier at My Stubborn Little Miss.  Reposted with permission.



Ellie, Megan's daughter.


If you have a child with Down syndrome, the odds are high that you've read Kelle Hampton's blog.  Even if you don't have a child with Down syndrome, if you read mom blogs or craft blogs or photography blogs, at some point, you've probably encountered Kelle's "Enjoying the Small Things."  I heard of Kelle's blog twice in a short period of time while we were awaiting Ellie's arrival.  The first was in a note from another mom who has a daughter with DS.  The second time I heard of Kelle's daughter Nella was through our maternity photographer.

I read throughout my pregnancy, and while I was in the hospital being induced, I won a random drawing on "Enjoying the Small Things" for a baby dress.  I've encountered Kelle online only, via her blog, Facebook, Twitter, and Instagram.  And I like her. Therefore, I picked up her new book, "Bloom," expecting to enjoy it, and I did.  (The same thing happened when I read "A Good and Perfect Gift."  But I also tend to think my friends have good taste, and I would have enjoyed both books regardless of my interactions with the authors and their friends.)



This review isn't sponsored.  I bought the book myself; Kelle is unaware that I'm writing this.  In fact, I pre-ordered "Bloom," but I guess I picked the slowest shipping option.  The day it was released, I saw it in a bookstore.  Instead of literacy books, I sat for an hour while Ellie napped and devoured "Bloom."  The next day, I purchased it.  I figured that an extra copy would make a good gift, a good loaner, or a good pick-me-up for a new mama to a little one with Down syndrome. 

First of all, I loved the book layout.  Because Kelle is a photographer, the book features plenty of full-color pictures of her girls, her family, Nella's birth, and most striking, a picture of Kelle's face as she realizes Nella has Down syndrome. That single photo explains the fear that accompanies a new diagnosis better than any words ever will.  Reading Kelle's blog now, life seems happy and enjoyable, but her detailed description of the grieving process reminded me that sometimes, we have to journey to happy.  I've read criticisms of Kelle, categorizing her writing as too "rainbows and unicorns," but her book contains rawness alongside the rainbows.


While reading Kelle's blog gives a window into her life, I enjoyed the greater detail the book can offer - on her beliefs, meeting her husband, and her family.  The descriptions of her dad during the initial days of Nella's life caused me to cry right into my coffee at Barnes and Noble.  His prayer for Nella is simply perfect.  "Poppa" is a chaplain in a hospital, and I cried because he would have been a comforting presence during Ellie's hospital stays.  I also cried remembering and appreciating those who stood alongside us - our pastor who baptized Ellie shortly after her arrival, our friends, our families, and even this online community. 

Rik, if for some reason you read this, (but you're such a proud dad, somehow I wouldn't be surprised) we could use you in DC.



Our experience with Ellie has been different than the Hampton's experience with Nella.  Ellie's extra chromosome was diagnosed before birth.  Nella was diagnosed in the delivery room.  Nella has an older sister and two big brothers.  Ellie's our first.  Ellie has been in and out of the hospital with a couple of major surgeries, whereas Nella has been fairly healthy.  Still, there is much of Kelle's story that I can relate to, to point at and say "I know that feeling!" As a memoir, this book is about Kelle's journey, and isn't a "how to" of raising a child with Down syndrome, nor does it pretend to be.

Some of Kelle's experiences are very "special needs" specific.  The uncertainty as a team of people arrive to evaluate your child for early intervention.  Meeting your child's therapist.  (Nella has a hot therapist who rides a motorcycle.  Ellie's therapists don't ride motorcycles that I'm aware of, and none are good-looking men, but she has a team of amazing women that I will thank publicly every chance I get.  So thanks again.)  Arriving at your first "Down syndrome" event and feeling scared, but meeting the parents who help make things better.  Meeting a child a bit older than yours who speaks clearly and can read, opening your heart to more possibilities than you dared hope.  (Thank you, Sammi.)

I don't think the "special needs" stuff is the best "Bloom" has to offer.  Aside from Poppa's prayer of thanks, my favorite portions of the book were about parenting and life.  Kelle writes, "But here's the thing: once you become a parent... once you start feeling a little funny and you buy the pregnancy test... once you see a pink plus sign... once you know that it's not just you anymore... well, you automatically carry around, for the rest of your life, an increased likelihood of having your heart broken."  That's true whether your kid has 47 chromosomes or 46, whether they're healthy or in the NICU.


I've written before about my love for John 10:10, where Jesus says, "The thief comes to steal, kill and destroy, but I have come that you might have life, and life to the full."  Regardless of your beliefs, or Kelle's beliefs, or my beliefs, her book illustrates this verse beautifully.  Full life isn't always easy.  No one ever promised it would be.  But a good life is rich and full, with a range of emotions.

Since I know not everyone agrees with my taste, I'll add that if you are bothered by super-positive, optimistic types, you probably won't like "Bloom."  But I like optimism.  "Bloom" feels a bit like sitting down with a friend for a cup of coffee, telling stories, and opening phones to share photos.


Wednesday, April 25, 2012

Bloom, by Kelle Hampton. Reviewed by Leah Thompson

Last week I finally finished Kelle Hampton's book Bloom.

And I have to admit, although I was looking forward to it, I appreciated her book even more than I thought I would.

I was introduced to Kelle's blog the week that Cora was born.  Within a couple of days, one of my friends e-mailed me Nella's birth story.  Since I was a brand new mom struggling my way through the beginning of my baby's NICU stay, still reeling and aching from a surprising diagnosis, Kelle's account of her own daughter's surprise Ds diagnosis hit home.  While I had been feeling so alone in my feelings, reading about Kelle's shock and grief really helped me to accept how I was feeling.  To know that I wasn't the only mother who had felt that she had been given the wrong baby, to know that the feelings of grief and shame and sorrow were not unique to me was so important to my own healing process.  I was happy to find that Kelle was able to bond with her daughter so quickly in spite of her tumultuous feelings and was able to express her love so purely.

As life with Cora progressed, I enjoyed occasionally getting my fix of Kelle's beautiful blog; perusing her gorgeous photos and reading stories of the joyful moments with her daughters.  But sometimes, especially when I was despondent over not being able to feed Cora, or quaking with fear over heart surgery, I couldn't relate to Kelle's happy and normal posts.  I just wasn't quite there yet.  After Cora's surgery, as our lives indeed began to feel normal, I was able to get back to Kelle's blog.  I know that there are people that feel that her outlook is too positive and not very true-to-life about the stress involved in a life parenting a child with special needs.  But, I don't really agree.  Yes, she is mostly positive.  And for me, I need perspectives like Kelle's.  I need to be reminded about the myriad of beautiful moments to be appreciated if you choose to look.  I need to catch glimpses that remind me of the importance of perspective, even if my own photos aren't quite as flawless, and my own Northwest weather not as accommodating year-round, and our own activities often more mundane.

Yes, Kelle is inspiring to me.  So when her book came out, I was excited to read it.  I was ready to feel motivated and inspired.

And although Bloom delivered that, it also delivered much more.   Kelle's book was not so much about Nella, but about her own journey during Nella's first year.  It delved into the details of her process into acceptance and revealed more raw emotion and a longer grieving period than I had expected after reading her birth story.  She talked about a health scare with Nella, which as any parent who has shared this kind of fear knows, puts your true values into perspective fast.  She talked about her nervousness meeting older people with Ds, and the worries about what life will be like when her daughter is no longer in the "cute baby" stage.  She wrote about wondering what to say to strangers, and even initially whether she had used the beautiful name she had chosen for the wrong baby. All of these worries and thoughts were part of her process, even after falling in love with her girl. And they are not unique to her.  Many of the mamas I have met in person and online since Cora's birth have struggled with similar things, myself included.  So it was really nice to gain insight into this side of Kelle.

I also really appreciated seeing how big a role her friends and family played for her.  My own network of friends is considerably smaller, but just as important.  And although I may have held people at arm's reach for a little while as I gathered my bearings, the support of my family and friends was crucial.  I will never forget the night that my mom and my youngest sister stayed with Cora at the NICU while I rested, being too loud during quiet time and partying with my wee girl as they somehow coaxed her to drink a full bottle.  Nor will I forget how important Mira's pep talks have been to me; always offering me a new way to look at things and the insight to actually appreciate my circumstances.  But certainly most important to me is the absolute love that has been shown to my girl from the second she was born.   Yes, hearing about Kelle's appreciation for her friends and family really reminded me how very thankful I am for my own.

And while my own enjoyment of Bloom was affected by my own similar experiences, it is a beautiful book that can be thoroughly enjoyed by readers that haven't been through something similar.  In fact, I am sure that a great many of the people reading this best-selling book don't have children with special needs.  But they are certainly gaining insight into at least one such life.  And this is a great book to offer that glimpse.  It is a beautiful book with a wonderful message and it does an excellent job of conveying how beautiful life can be, even when it takes an unexpected turn.  And that, my friends, is a great lesson for everyone to learn.

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