Sammy, Microcephaly, and Zika Virus

It's been a few weeks now, since that blasted Zika Virus shook up the world. Just before this thing was making headlines, I had an article published in The Ensign and was interviewed by Momscast for an upcoming podcast. Sammy was the topic. See...this little bundle is such an amazing little creature and she has made my life fuller. Some of our biggest blessings come in the smallest packages, ya know? In both the article and during the interview, I poured my heart out about what a blessing this earthly angel has been.

Then Zika showed up. People started asking me questions...which isn't a problem at all. Microcephaly, a word people hadn't heard of before, was all of a sudden in newspapers, on tv, shared all over social media. Awareness. There was a whole lot of awareness going on. And that's good.

But FEAR seemed to cover the globe with warnings not to travel to Brazil and nearby countries and warnings not to get pregnant for at least 2 years. Microcephaly. Devastating Crisis. I get it. It's scary. And before Sammy was born, I would have never said, "Yeah. Let's have a child with not only microcephaly, but spastic quadriplegic cerebral palsy, AND epilepsy! Yesss." It really is scary and there's a lot to do and think about and worry about. When we found out Samantha had microcephaly, we were devastated. It changed our life's trajectory. We cried. We worried. And sometimes we still worry. It's a part of parenting...and loving. You worry about those you love.

Then, the journalists of our incredible world started to step back and say, "We need to tell the whole story." (And I got excited because, guys, this rarely happens these days.) They have reached out to many families (ours included) so they can put a face to microcephaly. These reporters want to help diminish the fear and bring hope back into the picture. I applaud them.

Because what about the families who have children with microcephaly already? How are they coping with this crisis? And what about women who become pregnant? Is all hope lost? Come on. Let us not be so dumb!

A friend of mine -- though we don't chat on the phone or get pizza together, I still call her my friend -- Gwen Hartley is among those mothers who has shared her story. In 2012 I reached out to her because her two sweet girls have what Sammy has. (In the world of microcephaly...gosh are there a lot of variables. There are different reasons for microcephaly and different outcomes for each of those cases. What many don't know is that microcephaly is even more common than Autism. It's true. But not until this virus showed up did people even know about it.) The type of microcephaly Sammy has is more rare though...so I reached out to Gwen when we found out Sammy has Microcephaly with Simplified Gyral Patterns. In Gwen I found realistic optimism. That's different from optimism. And I liked that.

So, here the news and all these online sources are interviewing her and I love it. She is the voice for so many of us. This is good because her voice is beautiful.

I'm getting over the flu and my sleep patterns are all messed up. So I was up way too late, looking at Facebook on my phone, and I saw one of her articles. I read through some comments. And I was SHOCKED!

So I'm here to set a few things straight. I've had this on my mind for about 24 hours and I need to get it off my chest:


Stick to the old phrase, "If you don't have something nice to say, don't say it at all." You don't have to think our children are beautiful. You don't have to think they are as great as we do. You don't have to love them or take care of them. If it's not nice, then shut it.

Perhaps because you are on social media, you feel free to share hurtful comments. One day, technology will make it so we can reach across the screen and give you a good smack across the face. Or wash your mouth out with soap. Or something. Words hurt. Words matter. Don't be a Word Monger.

My child IS a blessing. My life has been infinitely blessed...yes...b l e s s e d, because of each of my children. I have grown and developed because of them. I am a better person for having each of them in my life. Sticking with microcephaly and Sammy, specifically, she has formed me, molded me, and perfected me in ways I could have never imagined. I have more patience, compassion, love, respect, faith, hope, diligence, and charity (among other things) because of her little life. Isn't that what makes the world turn? It's the love we have for our neighbor. It's compassion in our hearts that reaches out to those in need, to communities, and countries in need. Are we so base to think that something perfectly imperfect couldn't be a blessing? Am I perfect? Faaaar from it. (My rant here may be proof of that) But each day she is perfecting me...a process that will surely take longer than a lifetime. I am becoming who I was meant to be because of her life. I am not putting her through any grief or pain by allowing her to live. As her mother, I am hopefully showing her all the love a mother can. I am connected to her in a way that is very real. And I know she feels it. She is happy, and sweet, and kind, and the most forgiving person I know. I'm trying to learn from her. You should too.

Am I selfish? Are you implying that keeping a life that is imperfect is selfish? Perhaps loving, and caring...bathing, feeding, changing, clothing, rocking, nursing, loving, driving, therapizing (yeah, we made that up), and taking care of all a child's needs...like 100%...is selfish. Maybe. But I don't think so. I don't feel selfish for allowing my child to live and adoring her. I don't feel selfish for being her mom. In fact, I feel honored. I don't feel selfish for giving her life and enabling her incredible, strong spirit to change us all. Nope. I don't feel bad about it.

But yes, I cry when things aren't easy for her. It hurts me. It rips at my heart. Just like it does for all my kids. And sometimes when I'm reminded that she's not like other kids her age, I get sad. I guess I still mourn from time to time. But those times are far and few between as her light fills the darkness in my heart. 

The truth is, those of you who think it's selfish to have "these" children or are utterly confused at the thought that we parents of children with special needs feel blessed...you don't understand. In a very real and basic way, you don't understand the joy and love that beams from their eyes. Or how your heart flutters when they say a word, or take a first step.  You may never understand that. And that's where I find my peace with your hurt comments that you plaster on the Internet. You will never have the joy and yes, blessing, of understanding how...even in the pain and sadness and confusion and loneliness...of having a child who is not in the "norm," is incredible. In all Sammy's therapy...in all we try to constantly teach her, I'm the one is the constant student. She is one of my three greatest teachers. 

So my truly confused friend, just know that I hope one day you get the chance to meet Sammy. I hope you get to sit with her and just observe. I hope you get to see her smile at you and hear her sincere giggle. She will melt that hard metal gate wrapped around your heart and you will have a glimpse into Heaven...and then you'll probably pray, just like me, that you'll get to join her there one day.

Because there's no doubt in my mind, eternity is looking mighty fine for this sweet angel.  

Greatness

I believe that our children need to know how great they are...how they are instilled with greatness. They need to know that from us, their parents, and they need to hear it every single day. They need to know they are incredible and that their potential is limitless. They'll need to work and put forth the effort, but their desires and dreams are within reach...because they are divine. Do I sit down and do a little speech everyday? No. But I try to at least tell each of them that I love them each and every day.

So today, I put Micah in the car...and for whatever reason I was struck by his divine potential. I turned around before driving off and said, "Micah, do you know you are such an amazing little boy? So many people love you and will always love you. You are great and will do great things." 

That's when he picked his nose.

It Never Ends

Cooking. 

Cleaning. 

Packing lunches.

Laundry.

Vacuuming.

Dishes.

Scrubbing.

It never ends. When children live in your home, this whole cleaning business never ends. You try to teach. Ohhhh you try to teach them to pick up after themselves, to make their beds, to put their dishes away. Miraculously some of these life lessons actually stick. But a vast majority of the time, Mom is cleaning up all. day. long.

Or not. And on those days/weeks, the house is a mess until Mom (me) lets out a huge exasperated sigh and decides enough is enough...and she gets to work to clean it up all.

Last week we were visited by angels. They appeared to be your average young teenaged girls. But lo, they were great with spirit and zest for life! They showed up at the door ready to work. As a part of a service challenge they were doing at church, they came to the door and were asked to be put to work! (Did I already mention they were angels?) They did the vacuuming, cleaned my windows and sliding glass door, dusted, organized the dvds and filled the empty cases with the correct video (Whaaaaat?), and picked up the toys off of Micah's floor. It was incredible. And I love them for it.

Kirsten and Eliza

Their fearless leader, Lisa

 When I went to put Micah to bed that night, what did I find? A family of stuffed animals reading together. Nice touch. It was pretty darn cute.

But remember what I said about the cleaning never ending? Well, the very next day, this is what happened.

"Me? Are you looking at me?" says the sweet little boy.
And Sammy thinks, "Don't you dare pin this on me kid!" 

Callie, the ever-willing helper, cleaned it up with me and vacuumed the room. Oh those angels were kind and thorough, but they are no match for my children!

Sweet Dreams

Once a week I go to a park with my friends and their kids. We don’t always stay long, but we try to make it as often as we can. Today we talked about the rigors of bedtime. My friend mentioned that it was the worst part of her day! I think many mommies would agree.

I thought about how bedtime has changed a lot for our kids over the years. It once used to be, what I considered, horrendous. But it’s changed as our kids have grown and matured. It seems that their little minds and bodies now understand that sleep is actually a good thing. Phew!

And I got to thinking about our bedtime routine last night. It came to my mind in snapshots, and it was a beautiful picture.

~*~*~*~

An evening out with the family.

Pumpkins.

Train ride.

Carousel.

Smiles and snapshots.

Walk in the door. Commence bedtime routine.

Change into jammies.

“One last cookie…pleeeease?”

Pick out clothes for tomorrow.

Brush teeth.

Change diaper #1.

Change diaper #2.

“What? Go brush your teeth again. No more cookies. Seriously.”

Make lunches for school.

Potty for child #3.

Another cookie is missing. (Um, yep, that was me.)

Family Prayer

Gratitude

Peace

Love

Family Hug

~*~*~*~

Callie went into her room to read some books while I laid Sammy down for bed. Sammy was pretty wired after a fun evening, but quickly molded into my body as I sat on her chair in the corner of her room. She wiggled and squirmed at first, but the Sandman accepted the invitation and came in as I brushed her hair to the side. She was quiet almost instantly and her breathing was heavy and deep. I held her longer than necessary so I could just capture the moment and relish her beautiful spirit.

Afterwards, I went into Callie’s room. We talked about the day, laughed a little, and I softly scratched her back before kissing her head and walking out the door. My heart was overflowing with love for her. See, no matter how rough our day has been, bedtime has become one of my favorite times of day. It wasn't always that way, but it is now. And actually, our days are filled with a lot more peace than they used to be as well. So it's nice to cap the day off with a beautiful reminder of the day and how much I love my little girl.

I put Micah to bed about an hour later. He’s two and still my baby. After brushing his teeth, we give Daddy a bedtime salute and walk down the dark hallway to his room where I sing a song of his choosing and kiss his forehead. I then use the spray bottle containing lavender oil onto his bed and over his head. He giggles. He loves being sprayed with the lavender and will ask for it if I forget. I shut the curtains, lay him down, and quietly say “I love you” as I walk out. Just before I shut the door, I hear “I love you” in a soft whisper. And I melt. He’s two. He’s crazy busy during the day. But bedtime is always calm and precious with this boy. It always has been. 

I remember when bedtime was frustrating. When kids got out of bed. When kids would cry. When it seemed there were endless trips to the bathroom. And endless need for a drink of water! When I dreaded bedtime because it tested my patience when my patience was already spent. And now…now it’s one of the highlights of my day because after the busy-ness of getting ready for bed, there is a tenderness that kisses our cheeks goodnight.

After that, my sleep is rewarding and sweet. 

I've thought about how certain trials can often feel like, well…the bedtime routine. It’s hard. Sometimes tortuous! We don’t look forward to it. We dread it. We want it to just end already. But there is hope. It will change. When? We don’t know. But after the struggle is over, there is a layer of frustration/despair/anger/hurt that is removed and we are filled with even more love and compassion and beauty than was previously there.

Maybe it’s a weak comparison, especially depending on the trial that is being faced. But hey, some people have REALLY challenging bedtimes!

I think of Samantha's disabilities. I think of my worries about some of Callie's struggles. I think of working through the adoption process again...glad we're on the path, but in a constant state of mild anxiety over not knowing. Some of the trials we have may never end in this lifetime. But the pain of them can end when we learn to hand them over to the Lord. It takes practice, because sometimes, I've been known to hand pain and sadness over to Him, and then take it back! How dumb is that?! But I'm learning. And when it's passed off, I am filled with a tenderness and light that fills my entire body and spirit. I feel lighter.

And at the end of the day, my sleep is rewarding and sweet.

a difficultly beautiful birthday

I've been anticipating Samantha's 8th birthday for quite some time now.  And it wasn't with grand, happy anticipation.  What's so big about the number 8?  In the LDS church, it is the designated age when children have crossed a certain threshold of understanding -- when they are able to more fully understand right and wrong -- and so, it is when they are typically baptized in our church.  It's a significant time in a child's life.  They are old enough to say that this is what they want.  They understand what they are doing.  And, if that child does choose baptism into the Church of Jesus Christ of Latter-day Saints, then it is something that they really look forward to.  After baptism, they are given the Gift of the Holy Ghost.  It's a gift and a promise; if this child keeps her end of the deal by following the commandments and truly trying their best to be a representative of Jesus Christ in their thoughts and actions, then the Spirit will be their constant companion.  What an amazing gift.  A member of the Godhead will be with them at all times to confirm truth, to whisper promptings to their hearts and minds, to sanctify their efforts.

Samantha is eight.

She is my oldest child.

The one who typically leads the way, sets the example.

She did not get baptized.

Doctrinally speaking, I don't have an issue with her not getting baptized.  Through the Atonement of Jesus Christ, the innocent are protected.  His sacrifice is enough.  When I was younger, I needed to enter the gate through baptism...and most of us do.  But Samantha is perpetually innocent.  She doesn't even have the ability to sin.  She is one of the purest individuals living on this earth.  That is amazing.  And I should have been filled with more love and gratitude because of the simple fact that I live with an angel.  Instead, I mourned the fact that she didn't have the need for baptism.  We talked with our ecclesiastical leader earlier on in the year who informed us that there was no need for her baptism.  I struggled with this for months.  I cried about it.  But it was never about her getting baptized, because again, I fully understand and agree that Samantha is nearly as perfect as they come.  She will never sin.  She has no inkling of what malice or deception even is.  Her baptism was symbolic of how she would also never go to YW Camp, or to a dance, or...tell me how her day was.

So Sammy turning 8 was hard for me.  

Marcus asked if we were having a party for her.

"Yeah, we'll have family over I guess.  It's not like she's getting baptized and there's a celebration.  We'll just do it like we do every year."

I was such a grouch.

But Marcus quickly changed my mind and I got so excited.  All my sadness I put into a little party.

The goal was to have her surrounded by people who absolutely adored her.

We did Hawaiian flowers, pulled pork sandwiches, pineapple/coconut whips, rainbow cake, sensory sand play for the kids and coloring pages.

I was so happy and full of so much love.

  

Memory Lane
I am so in love with this girl.  Eight years has gone by so quickly.

We didn't have sand, but we had moon sand.  Close enough, right?

This picture was taken precisely .2 seconds before lasers shot out of Nate's eyes!

Not happy about something.

Sammy with Megan

Sammy's birthday cake.

I can try all I want, but I'll never get a really great cousin picture.

(World Cup in the back)

Sammy with her birthday tutu

Oh Sammy girl.  I love you so much.

Best picture of the night.  This moment probably lasted all of 1 second, but Marcus got it just in time, and I'll be forever grateful.

Sometimes you need a break from partying.

Our little family

So Sammy's 8.  And you know what?  It's no big deal.  She's still adorable and great and fun and perfect.  All that anticipation was completely ridiculous and a waste of time, but the feelings were very real for me nonetheless.  Celebrating our girl and the day she was born was just what I needed, I suppose, to remind myself that I really don't care that she doesn't do things like other kids her age...and never will.  What I really care about is that she's eternally mine and that she's here with us.  

That is something to celebrate.

I am so grateful.

My life is so full.

Seconds Feel Like Minutes...Minutes Feel Like Hours

Sammy had a seizure last night.  Callie and Micah were jumping on the trampoline.  I was cleaning up dinner.  Sammy was in the family room playing with some items.  I looked over and noticed she wasn't moving.  I had already given her her medicine, so I expected her to be sleepy.  I went over, sat down by her, but I couldn't get her attention.  Her head was turned, her eyes looking off to the side.

It was a seizure.

I laid her down and began to talk to her.  I stroked her hair.  Callie came inside and asked what was wrong, and we had a very calm, normal conversation about how I knew Sammy was having a seizure.  I casually pointed out how her eyes were fixed to the side, how her pupils were dilated.  I addressed the fact that her body was beginning to convulse, and do you see there?  Her lips are turning blue and the color in her skin is fading.  Callie sat close by Sammy, putting her hand softly on her head, and began to talk to her.

The details I omitted include the following:

The surprise I felt when I realized it was a seizure.
The pit in my stomach when her lips began to change color.
The panic when it seemed to last just too long...when the seconds were turning into minutes, and then too many minutes and I wasn't sure what was going to happen.
The images that ran through my mind of calmly calling 911 to get help quickly.
The bad feeling I had.

I got up to grab her Diastat and administer it so we could attempt to cut the seizure off, but the seizure seemed to stop.  She took a deep breath and she moved her head from one side to the other.  But then, once there, again I couldn't get her attention.  I'm still not sure if this was a continuation of the seizure or if this was just a part of her postictal state.  It was odd though.  I pulled out the camera and took video to show the doctor.  Micah had come up and been kneeling by me and Callie for what felt like awhile, though it was probably only a few seconds before he wanted Sammy.  He was concerned.  I could see it in his eyes as he approached.  He didn't understand and started stroking her arm.

You can see her here
And afterward here.  She was so still, and I kept watching her tummy to make sure she was breathing. 

After awhile, I picked her up and just held her.  Callie and Micah sang along to Frozen and danced while I rocked a sleeping Sammy.  I didn't feel comfortable laying her down to bed quite yet.  So I didn't.  After about 1/2 hour, Marcus got home.  She had just woken up and you would have never known her brain had gone haywire shortly before.

She was smiling and happy.

After some time we were able to get her back to sleep.  This seizure wore her out.

It's so disappointing.  I really don't like seizures.  They steal joyful moments and peace from my heart, and that makes me feel pretty resentful of seizures.  At the same time, in those moments I'm granted a gift.  Normally, I would have already laid Sammy to bed.  Tonight, for a good 45 minutes I held her in my arms and stroke her hair.  I sat on the couch, laid her next to me, hand my left arm on her body as she slept, Micah cuddled up to me in my right arm, and Callie holding my right hand from her chair as we watched Peppa Pig.  Was watching TV on our evening agenda?  No.  But it happened.  And I loved the connection we all felt.  We were this chain of I-got-your-back-no-matter-what-and-whenever-you-need-it family love.  And it was good.

We hope we know why she had this seizure.  Yesterday morning I forgot to give Sammy her medication.  Now that school's out, it's easier for me to mess up on our routine, because I'm establishing a new one.  I mentioned it to Marcus as I headed out, but he forgot too...it's not a part of his routine either.  So by today, though she had her normal doses, it was low in her system.  We hope that's why, because it often helps when you can answer "why?".

The "Why"...capital "W" Why...Why she has seizures, Why she was born with microcephaly, cerebral palsy, and has to deal with a load of other stuff...that WHY I'll never know completely until after this life.  But, I'm pretty confident I know the partial answer.  She's doing a mighty work just being here, giggling and smiling us into submission!  She's such an angel.  So perfect.  And I feel so blessed to be her mom.

Seizure yesterday, smiles today.  As long as I still get the smiles, I can take it.

Love Being Mom

I love being a mom.  I really do.  I know I'm not great at it, but I do ok.  There are times when I surprise myself and feel like, wow, I handled that really well!  But a majority of the time I'm reminding myself how to do it better...how I should have done it...how I ought to do it next time.  I often fall short of my ideal.  And I am in awe that I've been entrusted with such pure, amazing little people.  I am so grateful and humbled that I have the honor of raising such wonderful children.  And hopefully, hopefully, I don't fail them.  And I'm grateful I had a mother who was such a great example to me of how to lead, teach, and nurture my children so that they can truly feel how much I love them.  Do I do it right all the time?  No.  But I have a good model I try to follow.  Thanks Mom.

This weekend has been a mother's dream!  Friday I attended a Mommy & Me Tea in Callie's class.  There was a great little program and yes, tears came to my eyes as she sang her little song and looked right at me when she bellowed out "I looooove you."  She's not much into performance in the typical way...she gets very shy and doesn't like to be looked at, gets embarrassed...but there's a smile she tries to hide.  She's too cool, already.  And I love her.

Saturday was Birth Mother's Day and Micah and I spent it with Lindsey.  Words can't adequately express my deep love for her and it was great to spend our Saturday together.  

Me and Lindsey

Lindsey, Me, Cindy
Ready to go out for breakfast/lunch to celebrate each other

Lindsey and Micah

And then today, Mother's Day.  I was greeted with breakfast in bed...Cheerios and banana.  A wonderful day at church.  An afternoon with a long phone call with my mom...a back scratch from Callie served with cut up apples and peanut butter and her adorable toothless smile...and dinner with Grammy.  

Me, Peggy, Granny, Annie, Megan

All in all, it was a great Mother's Day.  And though I do fall short too often, wow, I love being Mom.