Reminders

The other night, I was reminded that I live with a special needs child.  Sometimes I don't like reminders.

After 9 months of no seizures, they entered into our life again.  At dinner, Sammy was so tired, nearly falling asleep with food in her mouth.  When we were done, I picked her up and held her as I checked something quickly at the computer.  I felt her softly kick me.  I looked over at her, and she appeared to just be dozing off.  Then she kicked me again.  And again.  And again.  And again.

"Marcus, I think Sammy's having a seizure."

I sat down and looked at her.  It came on so softly and mildly, that we truly couldn't tell at first.  And then the signs were sure.  The eyes shifted to the side.  The rhythmic twitches.  The mouth being pulled up on one side.  Color fading from her face.  Blue lips.

"Marcus, get the Diastat."

We haven't had to use Diastat in, oh, I don't even remember the last time we used it.  But I wasn't feeling comfortable with this seizure.  As if one ever could.  And since we haven't needed it in so long, we couldn't find it.  We couldn't find it?  How do you not know where life-saving medication is?  Luckily, she didn't need it and within a few long minutes, with a gasp for air, her eyes looked up at me and she was back.  I held her in my arms as she fell asleep and our once happy moods were no longer.  We had plans to see some friends that night, but ended up canceling.  She later threw up all over the floor.  I hate seizures.  Hate.  It's a strong word I try to reserve for things that I truly despise...not use it casually.  I hate seizures.

Saturday night was Women's Conference.  Just before I left my sister-in-law sent Marcus a text: If Sammy were 3 months older, she could go with Jenny to conference!  
"No.  This time it's for girls 8 and older."
"Yeah Jenny.  Eight."
"Oh my gosh!"

It occurred to me that Samantha will be turning EIGHT in June.  She is permanently in my mind as a 4 or 5 year old.  Eight blows me away!  We laughed about it thinking our little lady would be 8!  Woa.

At conference, I cried about it.  I watched girls sitting there with their moms, holding hands, sitting together, singing together.  And I wondered, even if Sammy was 8, I don't think I would bring her.  She wouldn't be able to sit through it.  She would be more of a distraction to others, and she probably wouldn't get anything out of it.  And then I thought of being there with Callie, and leaving Samantha home?  It felt wrong, and heart breaking.

And I thought of her baptism.  In our church, children are baptized when they are 8.  They are old enough to be accountable for their choices.  They are old enough to understand sin, baptism, and the basics of the Atonement and the Gospel of Jesus Christ.  Samantha will not be baptized when she turns 8.  She has no need.  Her spirit is perfect; she has no capacity to sin ~ to decide to go against God's will and then later, feel that remorse and want to repent.  This ordinance is unnecessary.  And my heart breaks.  It's not because she won't get baptized.  That's not the issue.  It's that it's another reminder that her life is different.

All weekend I've been sad.  My heart has been heavy and I've had a really hard time being cheerful and present.  I have begun to feel that turn around...and so before I forget some of these feelings, I really felt it was important to write them down.  Because I think it's normal to feel these things, and I may need a different reminder one day...to be reminded of that...that it's ok to be sad, turn it over to the Lord, and move forward.

I can honestly say that I NEVER wish for Samantha to be different.  It's the truth.  I feel immensely blessed.  Challenges we face because of her severe disabilities  have just become our lifestyle.  I believe that this attitude is a gift divinely given to me so I can move forward.  I love Samantha and every little part of her..  I'm obsessed with her little lips and blue eyes, the bridge of her nose where I kiss her often.  I love her little chin and her bent fingers.  I love her golden hair and her thin muscular body.  I adore her, and I wouldn't ask for her differently.  It's who she is.  And I've fallen madly in love with it all.  If she were anything different, she wouldn't be Samantha and I believe I would miss out on too much.

But from time to time, I still mourn.  And I have mourned this weekend.  Events...milestones...come and go and it causes me to mourn.  And what I discovered this afternoon was even more devastating....I suppose, even though I don't say it or think those words...that I wish she were different...there must be a deep part of me that does want all those things...that wishes she were something she's not...that she was getting baptized in June, that she would be watching conference with me and holding my hand, that we'd go out for ice cream and we'd talk to each other, that she was the older, big sister who set the example and told her siblings to "come on...just do what Mom asks so we can go already."

I don't like that about myself.  I do not like that after nearly 8 years I struggle with that.  And that I didn't realize it until today.  I guess this weekend, my real reminder was that I so desperately need the Lord and cannot do it alone.  And that only He can lead me, guide me, and walk beside me throughout each day.  I loved what President Eyring said last night, that He taught us, tutored us, and prepared us for specific trials and challenges that were meant for us.  If He prepared me, as I believe He did, then I am reminded to turn to my tutor for guidance, for support, and for the grace I need to become the mother I am meant to become.

I am blessed.  Life is good.  And I have a bit of that goodness wrapped in a tiny little Samantha sized package right here in my home.  And one day, I will no longer mourn because I will have learned to truly hand it ALL over to the Lord.  I'll keep trying.

The Misremembered Man by Christina McKenna

Wow.  I completely loved this book.  The setting is beautiful, rural Ireland.  As I read, I imagined my grandpa going about his day in his native country.  I immediately felt an at-home feeling as I read.  And as I read Jamie McCloone's words, I heard my grandpa's thick, rich accent.  So, on a personal level, I loved it.

As a literary worked, I loved it just as much.  It was charming and delightful.  There were tragic parts, parts that were difficult for me to even read.  Jamie is a man who has lived much of his life alone.  He grew up in a Catholic orphanage where he was abused physically and emotionally by the nuns and priests in charge.  He and the other children "inmates" were beaten, starved, and forced to work as slave labor in the potato fields.  Some of these chapters were difficult to read.  But these flashback chapters are surrounded by chapters of Jaime as a grown man...who has tried, the best he can, to rebuild his life.  And looking for companionship...love.  True, meaningful love to fill a void in his heart.

Lydia Divine, in her 40s, is tethered to her mother...responding to every demand.  She, too, looks for some deeper love and purpose in her life, yet is isolated from the "outside" world because she is constantly taking care of her mother.  Lydia IS divine.  She's attractive, kind, and proper.

The Misremembered Man was so well-written, moving so smoothly from these 3 different story lines ... Jamie in the orphanage, adult Jamie, Lydia.  How they mesh together is so well done.  And I truly fell in love with Jamie.  Oh how I wanted the best for him.  I really liked Lydia, but I loved Jamie...the deep love you have for the underdog, because that is what he had always been his entire life.  These stories, how they come together, was in every way the best.  Sad?  Yes, in parts.

But it ended exactly as it should.  I'm really not one for "romance" novels.  I pick my love stories wisely, I think.  However, I shut my kindle after the last word with such satisfaction.  One of the best unexpected love stories I've ever read.  I really loved it!

Five Stars.

Little Man is 18 Months...Whaaaat?!

Time just goes too quickly.  But my little guy, holy smokes, he's 18 months old now.  And he's stinkin' cute.  He is adorable, adorable, adorable.  He's also feisty, opinionated, hilarious, and fun!  First thing in the morning when he wakes up, I hear him him yell out my name.  "Maudy."  Yep.  He calls me Maudy.  Sometimes it's "Mauny."  It makes me happy.  And when I hear that "Maudy," it makes my heart happy.  It really does.

The other day I had to fill out some forms.  I had to write down the names of all who live in our household and their relationship to me.  It felt really pretty awesome to write down "Son."

Micah is smart and so curious.  His vocabulary is continually, and quickly, growing.  He loves balls, especially anything to do with football.  And anything he can do to make people laugh, he'll do it.  He's a little ham.  And I just love him so much.

Happy Half Birthday kiddo.  Love you love you love you.

Thoughts on Samantha

I heard this song last night and thought of Samantha.  Here are the words...and then my thoughts...

I am a little apple seed 
Sitting on the ground waiting to be 
An ap---ple tree, an ap---ple tree 

Everyone tells me that I'm oh so small 
And I'm never gonna grow to be big and tall, 
big and tall but I tell them wait and see . . . 

I'm gonna be like an apple tree 
I'm gonna let all my branches run free 
I'm gonna reach way up to the sun and 
Open my arms for everyone 

And like an apple is sweet 
I'm gonna be so sweet 
And like an apple shines in the sun 
I shine my light on everyone 
'Cause I' m an a-p-p-l-e, apple tree an a-p-p-l-e. 


Don't you just think of Sammy when you read these words?  So many people have told us what she won't do, but it's never stopped her.  And it's because of who she is...within.

An apple tree becomes an apple tree from an apple seed.  (woa, say that 10 times really fast!)

We are human beings because the seed we come from is genetically engineered so that we are...human.

But there's more.  Spiritually, we come from the Master.  We are sons and daughters of God...of Heavenly Father.  We are born from spiritual seeds of greatness.  Perfection.  Power, strength...and if we believe that, we are unconquerable.  Because God is in us.  In each of us.  No matter what our bodies look like, or how incapable we are of communicating or "doing," we are His.  The Light of Christ shines in our eyes and in every single cell within our bodies.  We are divine.  Because we are His.

I believe in God.  I believe in my Savior.  And if they are the architects of my life, and of the lives of each of my individual children, then we cannot fail...IF we also believe that we can start over each day and try again.  See, I also believe that is a part of the plan.  That the Plan, capital P, includes messing up, feeling discouraged and sad...sometimes angry, and continually turning around ~ toward Him, giving Him our burdens, and moving forward.  In the book It's Kind of a Funny Story, Craig suffers from depression and his doctor tells him "Two steps forward, one step back, two steps forward...."  Always making progress.

I don't struggle with clinical depression.  But I struggle with mortality.  I struggle with my imperfections and overcoming my own personal issues.  I struggle with being a mom, putting faith in the Plan for our family, and actually handing my burdens over to the Lord.  I struggle still, sometimes, knowing that Samantha experiences pains and frustrations that I can't empathize with...because I don't know her pain, not like He does.  And because of that, I struggle, at times, with sadness.

BUT, the majority of the time, I don't.  Most of the time I find joy in every aspect of my life.
I find joy in my family.
I find joy in laughing with the kids.
I find joy in being with my husband.
I find joy in cleaning the house, or making a healthy meal.
I find joy in Sweatin' for Sammy and feeling the love of soooo many people...and then the joy of paying it forward and helping others with the money raised.
I find joy in meeting new people (like I did today at church!) who share with me some of their life and we connect.  I find joy in that.
I find joy in being with friends.
I find joy in the rain and in the shining sun.
I find joy in life.

I'm serious...my life is so full of joy.  That doesn't mean, though, that I don't cry from time to time.

Sure my eyes are shut, but check out Sammy's ridiculously awesome smile mid-giggle!  That's joy!

All my children bring me so much joy.  Right now, though, I want to focus on Samantha.  She has been on my mind a lot.  She was my first little baby, the first one I held and loved, stayed up all night with, cried over, and worried about.  She had the first nails I clipped, hair I cut, and pains I tried to take away.  Aaaand the first tummy I tickled, toes that I counted, and eyes that took my breath away.  She was the first little one who taught me intense fear while teaching me how to have greater faith.  She was my first teacher.

Though she's created in His image, Samantha's body is noticeably imperfect. Her body is a broken.  But she comes from the same spiritual seed that I come from...that each of us come from.  She is composed of pure divinity.  You know that dessert...divinity?  She's the best possible batch ever made on the face of this earth.  Not spoiled by too many or too few ingredients, whipped to just the right consistency, and baked to perfection.  Yep, that's my girl.  Divinity.

She's the most perfect presence in my life.  When I think of the end of this mortal journey, it's Sammy that keeps me focused.  Because she can't sin.  She can't be hateful.  She can't lie, cheat, steal, or hurt others maliciously.  She's just my sweet, eternally innocent, Samantha.

How grateful I am that she was placed in our family and that I can call her mine.

It's Kind of a Funny Story by Ned Vizzini

 

It's Kind of a Funny Story.  This was not on my "to read" list, but I stumbled across it and just went for it.  The past 2 books that I've read, I knew nothing about going in (I'm such a thrill seeker).  I read it on my kindle, so I had no idea how much I would love the cover art on this book...and check out the spine!

I love the spine on this book.  It's the little things.  I have a friend who is obsessed with the inside cover art.  You know a quality book if when you open it up, you fall in love with the inside cover.  Right?  Right.  This is what you miss out on when you read on your Kindle.  Anyway... 

Written about a 15 year old boy who suffers from depression and considers suicide, much of the book is about him spending 5 days in a psychiatric hospital.  The story is set up with him hanging out with friends...getting a sense of the pressure he feels.  But it's in the hospital when his anxieties are peeled away and you find out who is really is...how when there is no pressure and anxiety, he's kind, generous, loving, artistic, and in many ways just a regular teenage boy.  He finds new friendships, realizes the value (or lack of value) in old "friendships," and learns how to move forward.  

There were times in the book that were too sexual for me and I'd skim over or skip.  So, there's that warning about the book.  I don't like too much sexual content when I read anyway, and it bothered me to read it about a 15 year old.  That bothered me.  But, I found it was easy to skip over it.

The book was interesting, and aside from the stuff I mentioned above, I really ended up liking it a lot.  I was interested in Craig.  I wanted to know more about his fellow patients.  I wanted to know what was going to happen.  I was rooting from Craig that whole time.  Interesting, yes.  First of all, I've never read a book like this...tackling the topic of depression...without feeling depressing itself.  When I was younger, I went through a period of time reading depressing books, but no books about living with depression.  Secondly, I have a husband who, from time to time, has to decide if someone should be hospitalized because of mental illness.  And lastly, well, I like a story with good character development...change...happy endings.  And this gave me that.

Sadly, though, the author, Ned Vizzini does not have that happy ending that he created for Craig.  This book is based on his own 5 day stay in a psychiatric hospital.  So much of this is truly based on his own experiences, his own thoughts and feelings even.  And though he had his ups and downs in life, he couldn't quite manage his own depression and committed suicide on December 19, 2013 when he was 32 years old.  Only a short few months ago.  I can only imagine that his wife and son continue to mourn his absence, and always will.

It makes me so sad.  It's just another example of how mental illness is that...an illness.  Something that someone battles with daily...and in a moment...the agony is too much.  They are too tired to do it anymore.  It's so sad to me.  And though It's Kind of a Funny Story is just a book...it's more.  Because it represents an entire group of people who need us ~ a friend who cares, parents who listen, professionals who help...

Ned Vizzini leaves a legacy of novels and work that have touched many people's hearts...many who can intimately relate with what he has shared.  While he was living, he spent a lot of time with teenagers creating writing workshops and helping them use writing as a means of medicine for mental health.  He is an example to us all in that he was able to use his own painful experience to help others...

 1981 - 2013