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.  

Micro What?

Before Samantha was born, we knew she had microcephaly.  I remember the word being thrown around, but I had no idea what it was or what it meant.  Basically, the only thing I heard was the teacher in Charlie Brown spewing out terms and a whole lotta nonsense.  Oh yeah, and my undying faith that everything would be ok and she wouldn't have this mico-whatever-it-is for long.

Fast forward 8 beautiful years.

I have a daughter who has microcephaly.  It didn't go away.  In fact, the severity of it increased.  There is still so much about microcephaly that we don't know, but there is a whole lotta stuff that I do know, that isn't nonsense to me anymore.  Stuff I know...that I have one awesome daughter.  And I'm not talking just cool...she is that...but I mean AWE.SOME.  And you know what?  I have come to realize that a lot of that awesomeness is wrapped up with this microcephaly business.  Don't get me wrong, she would be awesome without it too...but I can't deny that her diagnosis...her struggles...all her imperfections make her all the more perfect.  So much better of a person than I am.  She is who I want to be like.
 

Today, we wear yellow (Callie wears specks of it, but it counts) with others to remind ourselves that light shines from our children, no matter what size their 'ole head is.  That Sammy may have a small head, but I think it's the heart that matters to the Lord.  I mean, isn't it true?  Who has a greater impact on our lives, in a long run, someone who looks perfect, or someone whose heart is so large you just feel good around them?  I say it's about the size of the heart.

I love our Sammykins!  And today we celebrate Microcephaly Awareness Day!

The Book

He did it.  Michael Ririe got all the funds necessary to get his book published!  The Now I Can photographic documentary book will be published!!!  I can't tell you how excited I am for this. 

#1 -- I love when people reach their goals.
#2 -- I love when people I like/love/admire/etc reach their goals.
#3 -- Samantha's in it.  And, well, that's just cool.
#4 -- And something I wrote is in there too...so that's kind of fun for me too.

The goal was $12,000.  He needs $16,000 to cover all expenses.  You all have put in $12,970...and the nunmbers keep increasing.  I can't believe it.  Awesome! 

So, thank you all who pitched in, or who passed along an email, or posted it on facebook.  I'm so excited to see the finished project and will most likely be seeing it in March when Sammy commences her 2nd session of therapy there.

Happy New Year, indeed.

What's 3 Weeks?

I mentioned that I want to get Samantha into Now I Can for intensive physical therapy.  We are still working out some details and beginning to save up...and I have a phone call to make on Monday about her evaluation, but I really feel good about this place.  I was checking out the schedule tonight, on their website, to see what sessions were open and which one we'd probably want to take, when I saw this new video on their home page.  Oh I was so happy for this little girl and her family.  I have NO idea what Samantha's outcome will be.  She has different issues than this little girl.  However, I can't ignore this nagging to check this place out and get her there.  Maybe it's just me, but I keep feeling like it's a spiritual prompting.  So, I'm taking it as such and we're hoping to run with it. 

I have always felt that Samantha was more than what she appears to be -- though, at this point many would say she appears to be the fighter she is.  But, in the beginning, when we didn't know too much about her and her personality, I just felt like we needed to search out what was going to help her.  I feel like my prayers have been answered so many times, directing us where we need to go, who we need to meet, and at the right times.  It's been an amazing journey. 

So, what's a 3 week session at Now I Can?  How can 3 weeks make a difference?  Well, ask me what 3 week of intensive therapy can do and then watch this.

(I can't get this video box any smaller, so just mute the video so it's not super annoying to have 2 songs playing at once.  Sorry folks.)

Cerebral Palsy: A Question of Worth

For now, I don't worry too much about Samantha's future.  I just work on a day-to-day system.  Plus, I feel like she is surrounded by people who love and adore her.  But from time to time I think about her future.  I think about how people will treat her.  I think about if people will value her when she's older and not just a "cute little 4 year old."  The video below is a reality, and it makes me worry a little.  But, I hold onto hope, and faith, and sweet love....all for my little girl.

Cerebral Palsy Awareness Month

Most know that Samantha has microcephaly, but few know or realize that she also has cerebral palsy.  Yes.  It's true.  Samantha technically has Spastic Quadriplegia Cerebral Palsy with Ataxia.  This means she has high muscle tone with jerky movements, affecting all 4 limbs, and has some balance issues.  Her physical and occupational therapy all address problems caused by her cerebral palsy -- which are pretty much caused by her microcephaly.  (Cerebral Palsy is a term used to diagnosis a variety of symptoms dealing with mobility.)

We have been so proud of Samantha as she has made great progress, but we are also getting really excited for our plans to take her to Now I Can in Utah (In the video below, there are some clips of kids in these suits.  Sammy will be doing therapy in that suit.  It's had great results in kids with CP) -- hopefully late summer/early fall -- and attend an intensive physical therapy session (4 hours a day, 5 days a week, 3 weeks).  Her physical therapists are encouraging us to go and we're really excited.  We're working on saving up the funds (yes, I sold 2 items on eBay today thank you very much) and we're just going to make it work.  We'll be sure to keep you updated.

But for now, remember it is Cerebral Palsy Awareness Month.  Looking at Samantha, I have never seen weakness.  Not once.  All those kids with CP -- and kids who are not grown up into adults -- may have troubles moving or talking.  They may seem weak, but they are strong.