Tuesday, February 16, 2016

Feature Story News

Extra! Extra! 
Read all about it!!!

Or watch it, anyway.

About a week or so ago I received an email from a reporter in Washington D.C. 

Hi Jenny and Marcus - I came across your story, and that of Samantha, through the Foundation for Children with Microcephaly. I'm writing from Feature Story News in Washington DC - we make TV news for multiple English language channels around the world. While we are focusing strongly on the Zika virus at present we want to better understand the link with microcephaly but also (and absent from the coverage so far) better explain what a diagnosis of microcephaly means for children and their parents and how the condition is managed; I saw physical therapy was one aspect looking at your blog? If you would consider sharing your and Samantha's experience on camera please let me know. Best regards

Of course we'd be willing to help out, but see...we're not in DC. We're in California, Bay Area. That wasn't a problem for them. Within the day I was contacted by Rachel Silverman and we set up a time for her to come and visit our family. 

Yesterday Rachel came over. With her was Patrice, the filmer who flew up from LA that afternoon. They spent about 3 hours with us capturing different situations, talking with the kids, playing, and then interviewing both me and Marcus. Though I'm self conscious about what I probably look like and of course after the fact I wish I had said different things, we had a good time as a family. The kids were great and generally happy. Sammy was fun. And all in all, I'm just really glad that through our experiences we may be able to help others along their own journey.

The story will be done soon and they will send us a link to it when it's ready. I would have never imagined our life involving so many people from all over the world, but boy am I grateful for it!

 Sammy's a fan of Rachel's elephant sounds.

I felt a bond with Patrice. It was later that she told me that she has an aunt with down syndrome and could relate to a lot of what I said about the blessing of having special needs in our life. How grateful I am that someone with such a sensitivity and true love for the topic was able to capture our family on film. 

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.  

Thursday, January 21, 2016

Callie's 8 Years Old

 Before I catch up on Christmas, let's take some time to acknowledge the fact that Callie turned EIGHT years old! She's an old woman now! I'm among that group of moms who always say absurd things like, "How is that possible? How are you a year older already?!" We know the answer: time is constantly moving forward. But it still tears at my heart a little. She's no longer any part baby...all little, maturing, fabulous little girl.

Admittedly, Callie's birthday stunk this year. During Christmas everyone in our extended family seemed to take turns getting sick. Not us. We were strong and untouchable...until Monday when school and work started again. Callie went to school on Monday, threw up, and stayed home the next day...on her birthday...curled up in a blanket watching too much tv. But the thing is, once she threw up, she seemed to be fine. But she couldn't go back to school less than 24 hours later. So on her birthday, I took her out and we painted at this ceramics store. She also picked out a bracelet and necklace she wanted. Then I got the phone call to come pick up Sammy from school because she had a fever. (sigh). So on Callie's birthday, we rushed out to get her sick sister. Things just weren't working for the girl. We had had big plans including Chuck E. Cheese (which, let's be honest, I wasn't sad about having to miss) and family party. But all that got tossed out when window. So, on her actual birthday...celebration #1...we spent some quality Mommy/Callie time together and she got to watch tv the rest of the day.

A couple days later everyone seemed to be healthy. So as a little family, we did the birthday thing. She picked out dinner...noodles (no sauce), peas. And she opened presents.

She was pretty excited. The biggest gift will come in a couple weeks when my parents come out. Grandpa is going to paint her room and build her a bed. She's so excited!

And, call me a negligent mom, and I'll understand...but there were no candles. I was so consumed with taking care of everyone and still trying to make her birthday special, that I forgot to make sure we had candles. Luckily, Callie didn't care at all. She has strong opinions on how things should go, so I was very happy that she really didn't care. But, she did ask for a strawberry cake...and I delivered. I had never done a strawberry cake before, but thanks to Pinterest, I found a great frosting. I decided to just do a white cake and then this amazing frosting. We all loved it! I'm NOT a frosting person. I like just a thin layer. But this was heavenly. Whoever discovered this recipe, I bow down. It was light, fluffy, creamy, strawberry perfection. I will do this again.

The last celebration...yes, we are on #3...happened on Sunday with the rest of the family. This was the classic one. Candles, singing, eating cake. We had done all the presents and had the glorious cake...but a birthday just isn't a birthday unless we celebrate it at Grammy's with everyone at Sunday dinner.

So yes, Callie's actual 8th birthDAY stunk...but all in all...she kind of scored.

When I look back at the past couple years, Callie has had a lot of challenges. I'm so proud of how much she has grown, how she has overcome some of those, how she is working on them. She is so full of faith, and love. She is becoming this beautiful young lady who is learning to put her trust in the Lord and in those who love her. She is naturally curious and is finding more confidence in taking chances and risks -- the ones that help us grow and develop, that make us go out of our comfort zone.

The evening of her birthday, Callie asked me to read her "her" story. It's a small scrapbook of pictures from the first days of her life with excerpts from this blog...thoughts and feelings I had when she was placed in our home and the events that led up to it. I cried as I read. She looked up and said, "Mom, are you crying?" "Yes. I just love you so much." She smiled and cuddled in closer. My heart would be incomplete with her. I love Callie so much and loved having 3 celebrations of her birth!!!

Friday, December 18, 2015

2015 Christmas Family Movie

Year after year we make our Christmas family movie. Sometimes -- often -- it can be stressful. But when it's all done, the kids love it and watch it over and over and over and over again. So...it's worth it. THIS year we had some lighting issues and some of our cast members weren't as compliant, but the movie got done and we have loved it!

Merry Christmas
and a most Happy Holidays

Tuesday, November 10, 2015

When In Utah

Things I do in Utah that I don't do at home in California

Run in the rain 
(except I hear there was quite a bit back home yesterday! Yay!)
Run in rain that turns into snowflakes as my elevation increases
Flush the toilet every single time I use it 
(sounds gross, but I'm hard core in protecting the little water we have left in CA)
Shower for a REALLY REALLY long time
Give the kids a warm bath every single day 
(this drought has really messed up my life!)
Take a morning nap when my dad wakes up and says, 
"I'll watch the kids, why don't you go back to bed"
FREEZE daily. It's so cold here. I've become so wimpy
Snuggle with Sammy more often. I've had so much time to just be with her. I love it
Miss Callie and Marcus. I really miss them
Hang out with Bryan and Analisa regularly. That has been really fun for me
Get some of the best therapy for Sammy at Now I Can

I'm listening to happy squeals from Sammy. She's on her break and ready for a snack. I feel so blessed that we are here.

Getting her morning stretch on

Friday, November 6, 2015

Now I Can update

We're here at Now I Can and Sammy's been a really trooper. I'm so impressed with her. She is in the worst physical shape she's been in ... ever... and she's pushing through and working so hard. Our goal for this session of intensive therapy out here in good 'ole Utah is to avoid surgery. I'm not sure if that will happen. But I have faith and believe in miracles. Will she need surgery? Maybe one day. But we are taking this one day at a time and seeing if we can stretch out her muscles instead of having to cut them. It makes me sad to think about.
Coming from California, we didn't have "warm" clothes for November in Utah. I had to go out to Walmart and buy some clothes because we were all freezing. Sweats are working well for her.

Really working on getting that foot down.

Sammy is an angel. But something I learned last night is that angels apparently require no sleep. At all! She woke up at 1am and fell back asleep at 5am. This wasn't fun. Luckily my saintly parents are here and when my dad woke up proclaiming how he slept so well and then asked about me, he immediately told me to go back to bed and he'd take care of it all. Phew. I anticipated Sammy being a wreck today, but she's been doing so well. Hopefully she sleeps through the night and is ready for a weekend to recover before hitting it hard again on Monday.

Smiling but looking sleepy


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