Sunday, March 30, 2014


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 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.


Jennie said...

Thanks for your post. I relate to so many of your feelings. The atonement is what helps me the most. On those really hard days, all I can do is turn our challenges over to The Lord. Somehow we make it through :). I'm so glad Sammy is feeling better. Hope you don't see another one for a long time.

Emily said...

Love you Jen!

mj said...

Oh Jenny...I had the same exact thoughts on Saturday. I'm not kidding. Leah is a few months younger than Sammy, but I thought about her coming to the women's broadcast and how I probably won't bring her next year. Her baptism has been on my mind for probably a year already...and I'm at a loss. I don't feel like she needs to get baptized, but she tells us she wants to. It breaks my heart. I know she's in there. I love who she is, but I do long for her to be different sometimes. And it makes me feel horrible that I feel that way! Ahhhh! We need to chat...

Ashley DeMille said...

Jenny this is sweet and so real.

Debbie said...

Wow, I don't know if you remember me, but I knew the Green brothers in a BYU singles ward, and did pictures of your girls when they were babies. I was googling primordial dwarfism and came across Samantha's picture and recognized her and found your blog. I am so impressed with you! It's great to read a little about your journey with your special girl. I can't believe she'll be 8 this year!

Marcus and Jenny said...

Debbie! I DO remember you and the adorable pictures you took of our kids! How are you? I know, can you believe how quickly time goes?! Sheesh. I just blinked and boom, the kids are grown!!! ahhhhh :)

Debbie said...

Since my post, I have gone backwards and read most of your entire blog! What can I say, I spend a lot of time nursing a baby and your blog has been very entertaining and inspiring! Thank you for writing it. I'm sure your kids will love to read this when they're older!

It was very interesting reading from the end to the beginning, especially seeing all the patience and faith it took CONTINUOUSLY waiting for your baby boy! Once again, you are inspiring!

Now, I feel fairly caught up on Scotty, and very much in the loop with your family, but what ever became of Chris?


Related Posts with Thumbnails