Sunday, August 28, 2011

the best

Sammy ~

I just wanted to make sure you know you're the best.

Love you,

Friday, August 19, 2011

you are precious


I'm sorry that sometimes, in the midst of frustration, I forget who you are.  I always remember the obvious -- you are my daughter.  But I tend to forget that you are also Heavenly Father's daughter and I allow my frustration in a situation take over.  This morning, you woke up so early because of your cold I'm assuming, and when I went to get you, help you go back to sleep, you wouldn't.  I was so tired.  I went in to care for you and love you, but after an hour, I wasn't feeling as much love as I was feeling a deep desire to sleep.  I put you on the couch and left in frustration as you cried.  And it's not just that you cried, but you cried as if you were betrayed -- and that breaks my heart.  I still feel horrible about it.

I just found this letter I had written Samantha from back in January.  The thing is, I could write a similar letter to her today.


I'm sorry that sometimes I get frustrated.  Today, while we were doing therapy, you wouldn't cooperate.  I'm sure it's because, well, frankly...who wants to work like that?  It's uncomfortable and difficult.  But when I'm doing the therapy with you, I tend to allow myself to feel frustration that sometimes overtakes me.  I opted out for a bit.  I sat down in the hallway and let you crawl around and do what you want.  Callie was trying to help, but wasn't helping...and I told her if she wasn't going to help she had to leave.  That's fine, I suppose, but it was the tone.....

My letter could continue.  The thing is, each day I will make bad choices, and each day I will recommit to do better.  And, I really believe that as I do that...I'll be making progress. At least I hope so or else my life will seem pretty pathetic.  So I keep truckin', and those dear children of mind still love me and forgive me.  I'm so blessed.

Thursday, August 18, 2011

My Baby Rides the Short Bus

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with DisabilitiesMy Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli

My rating: 2 of 5 stars

Perhaps my expectations for this book were too high. Or, perhaps I just went into reading this with a different purpose than what the book is meant for. Either way, I have to say, I was sorely disappointed. I had such high hopes. I had hoped that this book would address the reality of life with special needs, but also give a figurative high five to me...a pep talk of sorts...a "hang in there because life is good" type of book. In the introduction alone, I immediately started feeling bad and overwhelmed with my life. Instead of feeling uplifted, I felt a heavier weight, which was unexpected. For me, the tone felt bitter and angry. And I understand that, truly. Samantha's life hasn't been a walk in the park day in and day out, but I have tried to overcome some of those feelings and have tried my best to fill my life with light and love. And I felt very attacked for choosing to live that way. I believe the book is supposed to highlight lives from varying backgrounds, but instead, again I felt attacked for being a Christian woman who puts her trust in God, who doesn't live an "alternative" lifestyle as is so often mentioned, who likes the school my daughter is in and plans to keep her there, and and and. I was the type of person that these individuals often referred to who just didn't understand...the moms who were clean-cut, religious, and because of that seemed to just not get it. I often felt sad, discouraged, frustrated, and angry -- feelings I have tried to overcome -- while reading this. Even the contributors in the book who tried to lighten things with humor were often crude in their language and very sarcastic, still giving off that angry tone. It wasn't for me. I wasn't sure if the purpose of the book was to connect with other families with special needs, to buoy each other up, or to get a book out there to the rest of the world informing them of the difficulties of parenting special needs children. I'm still not 100% sure.

However, with all that said, I'm glad I didn't put the book down (which was my plan). Because as I read, I read about the unconditional love that these parents had. I read about how they are willing to do anything for their child. I read about happiness and victories. There were some entire pieces that focused on the joy of their children...but a majority was focused on the "dark side" with a final paragraph or sentence in there -- sort of the disclaimer -- "but I love my child with all my heart." And I believe them. That's not the point.

I believe there is immense value in sharing our experiences, good, bad, the ugly. But it was just too heavy for me, too discouraging, to read all in one book. Story after story, experience after experience, I just felt a weight that made me feel...icky...(how progressive is that word?). On the other note, a book that only highlights the joys and blessings of our special needs children may be too unrealistic or fluffy for others. And, therein lies the joy of books...and the freedom of reading what suits us.

Ultimately, I'm glad I read the entire book because I feel more informed about the literature that is already out there, and I know this book actually was a pretty big hit. Maybe that means my opinion is in the minority. And that's ok with me. I would hesitate to recommend it to everyone with special needs children as I believe it just needs to fit your personality and what you need at the time of your coping/healing/dealing process.

View all my reviews

Wednesday, August 17, 2011

Such a Lady

Here, Sammy sits as she ponders the mysteries of life...

and then proceeds to explain to Callie, only to have this information fall on deaf ears. 
Such is the life of a little lady.

Sunday, August 14, 2011

Looking Back

I recently came across an old post on our family blog.  At the time I wrote that post, I was scared.  I was scared for Samantha's future and our own -- as a family.  I often contemplated what our lives would be like without her.  I was in fear of waking up one morning without her.  I was in fear of all the what if's that all of a sudden entered our lives when we stepped into our new special needs life.  I look back and read this post and a flood of emotion comes back -- the sadness, frustration, panic. 

As I reread this post, and remembered those feelings, it occurred to me that looking back was exactly what I was doing.  I was looking back Looking back to a time that was difficult.  Looking back to a time when I felt like I was struggling to breath at times.  Looking back to a time when I felt alone and a bit isolated -- as much as I tried not to be.  Looking back to moments when I thought I just couldn't make it.  Looking back

As I read, I was looking back at what once was -- and reflecting on what we had overcome.  See, you can only look back when you have made it through.  The tunnel may seem dark and narrow at times.  You may begin to feel claustrophobic and like the tunnel will cave in on you, especially when you can't see the end.  And while you're army crawling through that dark tunnel, sometimes it feels like you can only see or feel where you currently are.  But, ultimately, when you make it through, that's when you have the pleasure of looking back and seeing what you made it through. 

In deep appreciation today, I reread that post -- realizing where we are now.  Reappreciating how in love I am with Samantha and Callie, and Marcus.  And feeling an increased amount of respect, honor, and love for my Heavenly Father -- for sustaining me during that time.  I didn't realize it then.  It was only a logical sustaining.  I understood, logically as I leaned on my quivering faith, that He was helping me.  But today, I look back -- 4 years later -- and know He guided us through.  

I'll never know the future.  I can't predict Samantha's life.  But I no longer fear for her.  Now, we are going through a particularly good, stable time in her life.  And I'm sure, in fact I have no doubts in my mind, that fear will creep its ugly way back into my life...but then, when that happens, I hope to stumble upon THIS post, so I can look back and be reminded that I can make it through...I can feel love and peace...and I will know He's there.  And that will help me to once again look forward.   

Thursday, August 11, 2011

Ready for School...Again

This summer just flew by.  I truly cannot believe that it's almost over and we'll be starting school, again.  And this time, we're not talking about pre-school.  No ma'm.  We're talking kindergarten.  Seriously?  My baby is 5 and is going to be attending kindergarten?!

Samantha seems to sincerely enjoyed school, so that's a good thing.  But I so clearly remember her first day of preschool up in Spokane, Washington.  I cried.  It was a huge deal.  I drove her and picked her up everyday.  She was so loved and simply, adorable, being a little school girl.  Then we moved to California, and I drove her again.  This time it was further, but I loved taking her to school, seeing her face light up as we entered the classroom.  Then...the day came where we took the bus.  Driving just became too much for me with Callie.  Oh boy.  The first day on the little bus ... heartbreaking.  She was/is sooo small and to see her all strapped in and driving away....her little head barely visible over the window.  I cried.  I sure did.  But she LOVES it.  She giggles on the bus, loves the vibration, the loud sound.  Sammy.  She's her mother's child.  I loved school, and so does this little one.

So here's to the upcoming new school year and new classroom.  I hope it's as joyful and productive as this past one has been...but if I have to choose between the 2, I really think I'd choose joyful (at least today).

Monday, August 8, 2011


Whatever you want to call it...I'm feeling that way.  I've been reading My Baby Rides the Short Bus -- more to come on that later (most definitely -- I have my feelings about this here book), and I have to say I'm not sure how I've dodged so many of these special needs bullets that everyone seems to write about in this book.  Sure, I've had some doctors who aren't as thorough or even nice.  But, really.  We've had extraordinary doctors.  I feel like, for the most part, they have done their job.  They have tried their best.  They have answered my questions.  We may not see things they same way all the time, but that, to me, doesn't mean that they are out to make my life miserable.  We have had great therapists who care about and love Samantha.  We have had AMAZING teachers who adore Sammy.  IEP's have never been a problem.  Not once.  I haven't had to go in ready to fight for what I want for Sammy.  Now, surely we've had our struggles and not everything has gone smoothly, but I'm either "blessed" or dang lucky because this book is making me feel guilty that I haven't had to go through these same things as the writers in this book.  This book is definitely...well, there'll be more on it later. 

Has anyone else read this?  I'm not sure, yet, that I'd recommend it.


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