Wednesday, February 10, 2016

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.  


30 comments:

Lant Family said...

Beautiful article and so is Sammy!

Amelia said...

Amen to it all. Let's make Thumper proud, people. How dare they?? And they don't get it. They don't understand a single second in her shoes or in yours. You are one amazing mommy and writer. Thanks for sharing it all.

Anonymous said...

LOVE LOVE LOVE!!!!

I have followed your blog and LOVED your article in the ensign. THANK-YOU for standing up and defending all the beautiful children with Microcephaly.

Breck Mom said...

I don't know you personally but I have attenended your ward when we would visit our daughter Megan and her family. I have observed the love and kindness that you show others and that others show you. Sammy is truly a blessing and I appreciate your generosity in sharing these sweet and tender feelings with us. I know sometimes people can be thoughtless and hurtful, hopefully they just need to be educated. Your story surely does just that, and is comforting, heart warming and inspirational. It has certainly touched me deeply. Thank you for sharing.

Emily said...

Amen!

Cliff and Diane Gaede said...

She is beautiful. And she is a daughter of God.

Ashley said...

I am in tears reading this. Sammy is beautiful, I cannot imagine how anyone could think she is not. Your whole family is beautiful, not just physically (which, you all totally are) but everything inside as well. It is so wonderful to come across articles like yours and be reminded the greatness that the world can hold.

BrendaT said...

She is absolutely beautiful!

KatieL said...

OK, I have to tell you that your daughter is gorgeous. No, I'm not talking about her "inner beauty" that she undoubtedly has in spades, I'm saying she is really stunning on the outside. Not that it matters - externals shouldn't matter - but those eyes and hair!

Nicole Cost said...

This, you and her are absolutely beautiful !!! I don't think people understand the whole process we go through when a diagnosis is given, and sometimes even changed. Our babies are what human souls look like in their most purest,golden, gorgeous form. There are people who have known me for awhile and have no idea what a day in my life is like. I don't want pity, or sadness, I want awareness, and love and uplifting words of encouragement. My warrior has Dravet Syndrome. Not a day goes by that's not a fight, and let me tell you, he is THE strongest child, boy, man, human I know. He overflows with fight and strength and when times find him without, I tap his reserves and fight the fight for him. You see, we love our babies impossibly with every inch of possibility.

Shirley Beecher-Wilson said...

What a beautifully written and so heartfelt. Sammy is beautiful and so blessed to have a Mom so devoted and ready to put the haters in their place. I had a son with microcephaly he had uncontrolled seizures and they said he would never see his first birthday he out lived that statement by 3 1/2 months....this was in 1986 when they didn't know much about how to treat microcephaly. After his passing I made the decision to donate his organs and his body to research so hopefully they could help another family from losing their precious baby.There is not a day goes by I don't think of him and even after all these years every detail is as vivid as it was yesterday. But after reading The Hartley Hooligans and your post it does my heart good to know they've found ways to help save these precious children's lives. May God bless you and yours always and thank you so much for your post.

Shirley Beecher-Wilson said...

What a beautifully written and so heartfelt. Sammy is beautiful and so blessed to have a Mom so devoted and ready to put the haters in their place. I had a son with microcephaly he had uncontrolled seizures and they said he would never see his first birthday he out lived that statement by 3 1/2 months....this was in 1986 when they didn't know much about how to treat microcephaly. After his passing I made the decision to donate his organs and his body to research so hopefully they could help another family from losing their precious baby.There is not a day goes by I don't think of him and even after all these years every detail is as vivid as it was yesterday. But after reading The Hartley Hooligans and your post it does my heart good to know they've found ways to help save these precious children's lives. May God bless you and yours always and thank you so much for your post.

Maren B said...

Thanks, Jenny. Great to hear your perspective.

Tara said...

❤❤❤I love this!!! You words are so true! You said exactly how I have been feeling in regards to having a child with special needs,cp,microcephaly etc. This article made my heart melt and brought tears of joy! Thank you for this wonderful article!!! ❤ from South Carolina

Bishop said...

I loved your article! Thank you for sharing what it is like for you. My heart is so full for those with special needs.

Marcus and Jenny said...

Thank you Heather.

Marcus and Jenny said...

Thanks. I know we're all just sing the best we can and Thera just a lot of misunderstanding but there is never a place for meanness. Right? Right.

Marcus and Jenny said...

Oh goodness thank you. That means a lot to me.

Marcus and Jenny said...

Thank you for your kind words. We truly have been recipients of incredible love and kindness. Sammy brings treat out in others 😊

Marcus and Jenny said...

Oh thank you. What you say is kind But I believe we ALL have that within us. There is so much beauty within each of us and I think as we look for that beauty in others, our own beauty shines.

Marcus and Jenny said...

She does have some beautiful eyes...they lead right to heaven. 😊

Marcus and Jenny said...

Beautiful. These are strong kids. I love what you shared here. Thank you.

Marcus and Jenny said...

You are amazing. Thank you for sharing this. It is mothers like YOU who give mothers like me strength. Thank you for your path of courage. My heart feels close to yours. Thank you thank you.

Marcus and Jenny said...

❤️❤️❤️

JoAnn Hudson said...

Jenny, thank you for sharing your loving caring heart with us. I love Sammy. Do you remember when my calling in your ward in San Jose was to be with Sammy and sit with her in primary. What a special calling it was to love Sammy. I was living in San Jose for a few months for the warmth and sun near my daughter Amy Jo Francis Who loves you dearly. What a special work of joy, love and hope in your thoughts here and in the article in the Ensign. Thank you Jenny. You are love, you are joy, you are special. You are a wonderful spokesman for these special children. God bless your efforts.

Marcus and Jenny said...

Yes JoAnn. I remember you being there with Sammy. What a blessing you were to her. Perhaps we'll see each other again when I plan on visiting Utah this summer and seeing Amy. I love that daughter of yours! She's pure gold!

Maxine Love said...

Beautiful to read, such a beautiful daughter you have

Rachael Gourley said...

What a powerful, beautifully written, straight to the point article. Your children are very lucky to have you! Thank you for sharing, thank you for allowing me into your life through your story.

Zvi Tannenbaum said...

Thank you so much for this beautiful piece. Sammy is a miracle and thank you for sharing her beauty with us.

Heidi said...

I'm so sorry that someone said something so hurtful. I don't get people. Besdies, Sammy is beautiful, inside AND out. She is so lucky to have you as her mom, her friend, her champion and her therapizer.

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