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.  

Alone and Afraid

Who knew the San Jose Airport had this nifty contraption? We watched the balls go up, down, and around for 20 minutes before we boarded the plane. Pretty cool.

I have been not-so-eagerly anticipating flying alone with Sammy and Micah. Today was the day. In my gut I knew it'd be fine, but I still wasn't looking forward to it. Flying alone with kids isn't the problem...it's getting on the plane, off the plane, the suitcases....walking. Walking alone with kids in an airport...that's the challenge. You'd think throwing another kid in the mix would be difficult, but for many reasons I so wished Callie was with me. That girl is amazing and I didn't fully realize how helpful she is until I didn't have her as my bud on this trip. I credit modern technology and Halloween candy for our survival on the plane. Last minute I grabbed Sammy's Halloween bag...and the entire flight all she did was nibble on candy. She was happy.

Modern technology lulling my child into a deep trance-like state.

But we are here, safe, and the kids are asleep. Sammy did great on the flight but when we got out of the car to get into the house, she lost it. She cried, and cried (sugar withdrawals?)...which is not normal for her. And it was heartbreaking. Micah had fun but was confused as to why we had a new house. 

Halloween candy kept Sammy happy.

At 8pm, Micah was hungry (after refusing to eat dinner that Irene cooked...and was delicious by the way), so I cooked the frozen pizza Bryan picked up for us. Sammy and Micah ate pizza at 8:00. They should have both been in bed by 7:30. Oh well.

I had decided that Micah would sleep in a separate room...the room my parents will be staying in. My hope was that for just a couple nights that both he and Sammy would sleep well. Sammy wakes up early and I don't want her waking Micah up at 6am. And Micah has a habit of waking up in the middle of the night and coming to sleep in our room. I don't want him waking Sammy up at midnight. But at 10pm, after he was still not asleep, he told me he didn't want to be alone. I wish he had told me that about an hour earlier, but ok. So we snuck into Sammy's room and he laid down on a really squeaky bed. Sammy squirmed but stayed asleep. We'll see how this goes.

It was fun seeing Bryan, Irene, Analisa, Alex, and James. Micah loves James. He kept talking about seeing Jamesy tomorrow. 

I'm not sure why, but it feels strange to be here. I've done this trip for Sammy a few times, but being here feels odd. Perhaps because it all came about so quickly. Or that Callie's not with me this time. I'm not sure what it is, but being here feels a little surreal, like I can't fully believe I'm here. I think ak part of me always wanted to come back to Now I Can, but also believed that chapter had ended. That due to the difficulty of actually coming out here for 3-4 weeks...we were done. And yet, this is what we feel is best. It's weird to be here. But I am here. And we are doing this for the next 3 weeks.

Love

On Sunday after church, I took this picture. Sammy was walking around and I was trying to capture her cute face. It wasn't working. I figured that none of them would turn out but at least I had tried. When I stopped to look at the hundreds I took in about 20 seconds time, I found this one. At first I thought it was cute and moved on. But all day I kept going back to it. I couldn't stop looking at it. And I still can't. There's something about it that I adore.

Sammy as the focal point makes sense. In many ways our family revolves around this one little girl. Everything we do is done after consideration of Sammy's needs. She's special, and that's ok. It's good. We are learning patience and compassion. Callie and Micah have both taken an especially deeper tenderness towards her lately. I'm not sure what it is, but Callie is always trying to comfort her, calm her down, hug her, play with her hair. She's sweet with Sammy. Micah has been mimicking Callie's ways and it's been beautiful to see this little toddler love his older sister so gently.

I love her hands curled upward. Well, in many ways I despise it, but those hands are precious to me. They are held upward, toward her heart. They are curled into tight fists and curled inward at her wrists. These hands don't serve her as my hands serve me. What she wants done is not accomplished with these balled up hands. They struggle to put food in her mouth properly and cleanly. They do not hold onto objects very well, and once in her hand, they don't release what is being held. For that reason, she has to use the force of her arms to fling it out of her hands. She reminds me how much I take my hands for granted. As I sit and quickly type my thoughts, she struggles to open her hand. For the past week or so, I've been giving Sammy massages before going to bed. I rub out her legs and feet. I finish by rubbing her arms and hands. She becomes so relaxed allowing her hands to unfold and remain free from pulling tight tendons. This has become a special time of day for us both. She falls asleep almost instantly after her massage and I walk away feeling the love you only feel after giving service to those you love.

I love the light that is shining in through the curtain. It creates a soft glow around her and I'm reminded of the light that only the Savior can provide. I see this light in Samantha. I wish I could say that I see it constantly. I don't. My eyes are veiled at times from my own inability to look beyond the moment. Sometimes the teeth grinding or the squeals that are so loud they pierce my ears, or the daily tasks of life get in the way of seeing the light of Christ emanate from her eyes. But occasionally I stop and see it. I stop and absorb it. I have always felt like Sammy is surrounded by angels. I believe that to my core. It's not just a belief, really. I know there is no way she could be where she is today without angels protecting her. She has a reason to be here. She has a mission to accomplish, and I feel really blessed to be a part of that. I do believe that one day, I will see her robed in so much light that I may be blinded by it. That it won't be until I'm sufficiently purified that I will be able to see her fully as who she is. Oh, I truly believe she will be among those who will usher me to my Savior. I love her so much.

I love her little smile and long face. Quite frankly, she is one of the most beautiful children I know. Hey, I get it. People stare of her sometimes. They are surprised by her unusual looks. But she is stunning to me. I think it goes back to that light that shines from her pores. Her soft skin, her rosy lips, her honey streaked hair. She's so beautiful to me. I love all her imperfections because it's who she is.

I love Micah in the back. In his church clothes still, walking with his little Micah swagger, I love his blurred image behind her. It completes the picture for me. He's the visual reminder that in our family, we've all got each other's backs. We're there for one another. We will protect and love no matter what. We won't step out on each other. We will be there. There's a lot that could happen in this lifetime, but we'll be there for each other.  

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!

Primary Program 2014

What is my favorite Sunday of the year? It's the Primary Program. If you are a member of the Church of Jesus Christ of Latter-day Saints, you'd probably say the same thing. Every Sunday we are edified by speakers in our congregation and hear great messages. We feel the Spirit and it's great. But on this Sunday, the Primary Program Sunday, the children are in charge of the day. They share the messages. They give the talks. They provide the music. They often usually also provide the comic relief.

For the third year, I've been responsible for the "script" of the program. It has become increasingly important that this is their program, not a program that we create for them. And so, this  year I asked them questions, and they answered. I recorded what they said, and boom, the script was made. What resulted with a program full of sweetness, honesty, and testimony. I sat up at the podium with the children and enjoyed every moment of it. They were all so well-prepared and excited to do the program. I know Callie had invited many friends to attend. The songs were so beautiful. They sung like angels. At the end, I couldn't even sing the closing song, Families Can Be Together Forever, because I was choking on my own emotions, tears spilling over onto my cheeks.

What was the overall message this year? Families are Eternal. They are permanent. There is no end to our family bounds after death. We can be together forever. By following the plan of our Heavenly Father, we can return and live with Him again, be wrapped in the arms of our Savior, and be sealed to our families for time and all eternity. For me, I'm not sure there is a greater message that the Gospel of Jesus Christ teaches. These children get it. Their purity is beautiful and their message simple and true. 

I'm grateful for my eternal family. I will do all in my power to make sure that we will be together forever. No momentary pleasure is worth sacrificing my eternity with them, because without them, my eternity would be feel empty. 

After church we tried to get some pictures of our two sweethearts who participated in the program. Let's just say, pictures haven't been the easiest lately, but we'll never stop trying to get a good one! 

After School Sammy

One of my favorite times of the day is when Sammy comes home from school.  We wait for the bus to come down our street and stop, right in front of the house.  It makes me so happy.  When the bus doors open up, it's the same everyday.  I walk enter the bus, walk up the 3 steps, turn to my left, and there she is...sitting on the left side, front seat, all strapped in.  There hasn't been one day that has gone by that she doesn't give me a big 'ole smile when she sees me.  I unstrap her, take her back pack, wish our bus driver farewell and inside we go.  On our way up the driveway into the house, I give her kisses and ask how her day was.  She just smiles and leans in as I carry her up.  Then, she sits for her after-school snack.

It's my favorite.

Vocal

Someone was h-a-p-p-y in therapy on Friday and very vocal.  It was a good day.  Maybe she knew that she was going to be seeing her daddy soon.  Marcus flew out for the weekend to spend time with his little family and it was so fun to see him.  Sammy, Callie, and I were all happy to have some daddy-time.  She must know that time is quickly coming to an end, because she is NOT h-a-p-p-y right now in therapy.  So sad.

Sammy's Birthday

Marcus had the room ready so as soon as she woke up, she was surrounded by her favorites: balloons, an empty box, the grocery bag, plastic hangers, the broom, her backpack, and some plastic containers.  She was in birthday heaven!

We didn't do presents.  Instead, we opted for Chuck E. Cheese.

Callie was thrilled.  Sammy was compliant.  She was mostly fussy, but enjoyed a few "rides" with Callie.

Yikes!  I hope I felt better than I looked.

Callie, again, thrilled.

Ya know?  The whole Chuck E. Cheese thing, we knew Callie would love it more than Sammy, but that was kind of our intention.  We wanted Callie to be excited about Samantha's birthday, and I think it was a success.

Samantha Turns SIX

Way back in June, the Samsquatch turned 6.  I can't believe it.  I most certainly can.not. believe. it. 

We were having camera difficulty, but we still were able to get some photos.  Even if they weren't the best, we have some documentation of the day.

I started getting really sloppy with the frosting after a bit.  My hand was getting tired.

Sammy just wants to dig in.

And of course, Callie and I hep her blow out the candles...otherwise she'd just reach out and grab them!

I swear we have this exact same picture from her 1st birthday!  Her hair's just shorter from her surgery...I have to find that picture.

The day was all together too tiring, and Callie just called it quits for the day.

Sammy and Mommy

Sammy's Class

I love Samantha's school, and she loves it too.  She really does.  I can tell when I take her, she is happy to be there.  Her classroom is filled with love.  She has to work, and work hard, but it is fun for her and I think she knows she is loved.  I think all the kids in her class feel that.  

When I go to Sammy's class for some kind of activity, I try to take pictures of all the kids and email them to their parents.  Here are just a few of the kids I got.  I think they are so so beautiful.  And I wonder...when I look into their eyes...what are they thinking?  What do they want to say that they can't? 

Callie loves Sammy's class too.  She loves joining in on the songs and being a part of the class.  I feel really blessed that Samantha was able to get into Argonaut Elementary.  We were just kind of placed there, but the school psychologist had mentioned that she thought it was the best fit for Sammy.  Now, after being there a couple years, I see why parents wait in line to get their kids there.  It's fantastic.

Sammy's teachers, aides, and therapists are what make the class what it is.  We definitely have a super supportive administration, but it's who works with the kids everyday that makes the class so great.