My Community

When I became pregnant with Samantha, I had no idea I was joining a community that would be so uplifting.  I certainly knew I'd join the ranks of motherhood and would be connected to the millions around the world who are parents.  The idea of starting our family filled me with such...joy.  True joy.  We made our decision to start our family, and do it right away.  We knew it was right, and we felt such deep happiness.

But, parenthood is filled with a many of sub-groups, or sub-communities. 

mothers of daughters

mormon families

"newlywed" parents

student families

BYU babies

special needs families

I never could have anticipated that we would be entering the special needs community.  And as shocking as it was at first, I have felt a change of heart.  That shock has turned to love and deep appreciation for the many I have met who have been in this community far longer than I have.  I've learned from the many who continue to share their insights and their hearts with me. 

I know I've shared this before, but I have loved being a part of Kidz.  Recently, it was featured on KSL in Utah.  Even though Tara, who started the blog, is from Utah and so it gets a lot of readers from there, this is a blog that helps people worldwide.  I'm so honored to be a part of it.  One of my favorite parts of being in Utah, aside from Samantha's progress with therapy, was being able to meet some of these moms who I've been writing with and getting to know.  Meeting them in person helped solidify my love and compassion for them. 

This community is incredible.  Some of the kindness, gentlest, wisest people I know are elite members of the special needs community, and I'm happy to be a part of it...even if it means some heartache here and there...it's one great group to be a part of.

And being a part of this community, led us to entering another:

families who adopt

What a blessing.



Who Are These Children? by Gena and Michael Calta

Who Are These Children? by Gena K. Calta
My rating: 4 of 5 stars

I read this book awhile ago when a friend mailed it to me. If you follow my blog, you'll notice that this year I haven't read a lot of fiction...at all. Is this fiction? Yes. Based on real life? Definitely. Immediately I was interested. Plus, it's about a little boy with special needs and well, I've been very interested in these books as I work on my own book.

Though this is written for, I would say, a general Christian audience, as an LDS woman, it was obvious (I think anyway) that the authors were also LDS. I appreciated the similar opinions and views we had. A large part of the plot is a dream. The dream takes place during the pre-existence. I thought it was interesting, but it felt a little too LDS fiction for me. What do I mean? I'm not sure exactly. So it's probably very unfair for me to even say that. And I wince a little, even, saying that. Maybe because I feel like it makes me a bad person or something. Partly, I think I personally have a hard time reading fictionalized accounts of true events -- historical fiction -- when it comes to the church. Is that weird?

However. I NEED to say this. Because this was what made me LOVE this book. There is a scene at the end of the book. The boy's mother has passed away. And, years later, he does as well. Upon dying, he meets his mother. She barely recognizes him because he is in a perfected state. But she sees his eyes, and his smile, and she knows it's him. All his physical ailments are gone. They embrace, and the authors couldn't have done a better job of articulating that moment...the moment I so look forward to having with Samantha one day. I was in tears. It was months ago that I read the book, and it still brings back that feeling for me. It has made me realize that this life, no matter what trial or hardship comes along, is worth it. Every single day, I think about what I read in that book -- about that mother and son, surrounded by other family members who had passed away. I felt such joy as I read that. And it has seriously made every single "difficult" moment worth it. Because, I realized...or perhaps re-realized, that life is so short. Our pain and sadness. Our discouragement and frustration. It's only a moment. And I want to one day be able to stand before the Lord and say that I had faith during those moments...and feel qualified to embrace my perfected Samantha, to talk and run with her, laugh and joyfully cry together. This book was worth every word I read just to get to that part of the book. And, I really needed to read it all to feel like I did when I got to that part. It was perfect and beautiful. I would recommend it to everyone, because whether you live with what we traditionally think of as special needs or not...we all have needs that are special and unique to us, that make life seem hard and painful. And this book, reading that moment that was so beautifully crafted, put it all into perspective for me. I always try to live optimistically, but this did something more for me.

It really changed my life.


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Chicken Soup for the Soul: Children with Special Needs

Chicken Soup for the Soul by Jack Canfield


My rating: 2 of 5 stars


I'm not sure how to rate this. It's actually more of a 2.5. It's hard for me to rate this because Who in the world gives a TWO STARS to a Chicken Soup for the Soul book, for heaven's sake!? Chicken Soup for the Soul's are all the same model and format. And they follow that to appeal to a certain audience -- and they have been amazingly successful. I read a few as a teenager myself. So, I guess I knew that coming in, but despite my knowledge of the type of book -- and my predetermined idea that I didn't want to read it...I did -- more for research sake I suppose. To see what's out there, you have to read what's out there...I guess. Perhaps I just need to stop reading books about special needs. Maybe it's all my problem here.




When I read My Baby Rides the Short Bus, I felt it was too hard, too depressing, and too cyncical. Chicken Soup for the Soul: Children with Special Needs was just too soft, too fluffy, and too chipper. Again, it follows the Chicken Soup format, so it works. But for me, the short stories of inspiration weren't enough. True, some of the stories were inspiring and uplifting. No question. But I had so many questions that a small page long story couldn't answer.




Overall, inspiring, sure. But as a parent reading it, I felt it was too...happy? Oh, does that sound like I'm a miserable person or what?! As if I like to wallow in my self-pity or something.... Unreal. That's what it was. Because it was almost entirely happy, uplifting, and cheerful, I felt it was a little unreal and didn't give a good picture of the joys of special needs kids -- because afterall, we need to experience sorrow to experience joy. When it was all joy...it just seemed unrealistic. But, one more time, these books never claim to be more than a cheerful ray of sunshine, and if you read it a little here and a little there instead of novel style, it probably has a different effect.




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My Baby Rides the Short Bus

I read a book and posted it on Sammy's blog. It's a special needs book, so I felt it was appropriate to review it there...but since I keep my list of what I've read during the year on this blog...I'll put the link here too. With the title My Baby Rides the Short Bus, I admit I wasn't sure what to expect. I was torn between ... is this a funny title? or is it disrespectful? I was torn during the entire book...not sure what to feel. Ultimately, not my favorite. But, there's so much literature out there that speaks to different people, their personalities, and their circumstances. It just didn't fit any of my own, I suppose. Anyway...to each his own, right Dad?

For the Love of Aimee by Julie Riera Matsushima

(Unfortunately) Due to sickness in the family (oh how we're so sick and tired of the flu!), I was able to read For the Love of Aimee within a short few days. (Yes, the flu slows me down and gives me time to sit and read during the day. It was actually quite nice.) For the Love of Aimee is written from the perspective of the grandmother -- a grandma who is heavily involved in her granddaughter's life. Aimee, born with microcephaly and cerebral palsy, was given a grim prognosis at birth. The family was told that Aimee would, at best, live in a vegetative state. Julie explains in her book, their fight for Aimee and the course of action they took to make sure that she was able to meet her potential. To her credit, it seems that Julie, as Aimee's advocate, was a driving force behind seeking the proper help and therapies that Aimee could (and did) benefit from. Perhaps it was because she was close enough to the situation, but also just removed enough, that she was able to more clearly see the big picture. I'm not sure. But it doesn't really matter. The love and bond that these two share is inspiring and I found myself imagining my future grandbabies and being this involved in their lives as well. They were nice daydreams.
As excited as I was to read this book, I wasn't sure what to expect. I knew that Aimee had cerebral palsy and microcephaly. I wasn't sure how I'd feel as I read the pages. The cover art is a picture of Aimee, and I immediately noticed similarities between Samantha and Aimee. I could picture Samantha 10 years from now, and I began to worry if while I read this book I would be too attached to Samantha. Would I be comparing? Would it remind me of feelings I've had? Would it be painful to read? On some level, I was expecting myself to cry a lot during this book. I'm not sure why, but I think I expected that this would dig up some old buried feelings that my subconscious had buried -- or some other mumbo jumbo like that. To my great relief, I was fully invested in Aimee and Julie's story together. I anxiously read to find out what happened next in her life. I was curious. I felt inspired. More importantly, I felt happy for Aimee's successes. And, most importantly, I felt hopeful for my own Samantha's future, whatever it is. Yes, there were times when my eyes filled up with tears...and perhaps they spilled over and ran down my cheeks. But I more often smiled and laughed as I read. Julie and Aimee's story is a happy one, and I was so grateful for that. We ought to read more happy things that uplift and encourage us.

Aimee's positive attitude and determination did, however, remind me a lot of Samantha's, and reading this reminded me of how grateful I am to have her in my life. For me, the most poignant section of the book is found in the epilogue.

Without Aimee just the way she is, I would have missed out on the experience of a lifetime. I would have missed the self-satisfaction of overcoming personal challenges. I would, most likely, have never known my own capacity for devotion to a grandchild in need who was wanting to be loved and acknowledged as a valued human being. I would never have understood what it means to truly respect another individual, body and soul, for who rather than what they are. Most of all, I would not have known that faith and hope are at the heart of our existence, no matter what kind of existence it is.

When Samantha was born, and the doctors gave us Samantha's grim prognosis, I cried. As I held Samantha and my tears dropped on her tiny head, her cap absorbing each tear, Marcus put his arms around me. He boldly stated that one day we would look back and say that we wouldn't have it any other way...that Samantha is a blessing the way she is. He confirmed that we wouldn't feel this way today or tomorrow, but in time we would see the blessing that Samantha is...just the way she is. I have experienced this change of heart that Marcus told me we'd have, and I know he has as well.

When I read this paragraph in the epilogue, it rang true in my heart...and my mind. It makes such clear sense to me, partly because I have experienced it myself with Samantha, but also because I believe Julie and I share a similar faith and belief that there is a greater plan and if we accept that, we can receive the blessings that await. Samantha has touched my life in more ways than I could begin to explain in this post...and Aimee does the same for all those who feel of her spirit, whether from meeting her or even just reading about her. She's an incredible young woman who is a sister, daughter, granddaughter, and teacher. I'm glad I had the opportunity to read this book and be reminded of the innumerable blessings in my own life. Even though this is about Julie and Aimee, I found myself wondering a great deal about Aimee's parents. I wondered what it was really like at home. I wondered about Chloe, her identical twin sister, and how she felt about Aimee's special attention. I wondered about Jeffrey, the younger brother, who was born into this special needs family, and how he felt about everything.

Though Julie Matsushima paints a picture of her journey with Aimee and special needs, we can all learn from the lessons taught in this book -- the need for patience, increased charity (the true meaning of the word), dealing with trials, choosing to act or react to life, etc. It's definitely worth reading.

** You can find more information about Julie Riera Matsushima at her website and more information about her advocacy for special needs children at her non-profit foundation webpage, That's Amore Chairtable Foundation, Inc.