Sammy's Feature Story

 

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. 

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.  

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.  

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!

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.

Balloons for Brady

Just before Christmas, a sweet little boy passed away.  I can't imagine losing any of my babies, but the timing of it seemed especially heart-wrenching.  Brady was like Sammy in many ways, and so his passing touched my heart in a way that was especially heartfelt.  It reminded me how fragile life is.  Too often, I get in the mode of "life."  I forget that each moment is a gift.  Maybe that's not all together a bad thing.  If I dwelt on every single minute I had with my children, maybe I'd never get anything done....and we are here to learn and grow and be productive as well.

But, when the scale leans to heavily on one side...the one where I forget to treasure our moments together, the hugs, the kisses, the giggles and even the troubles...then that imbalance can be heartbreaking.

Brady has helped me realign my focus.  To balance the scales.

The day of his funeral, those who could not attend let balloons go in his memory...in his honor.

This was the day of Analisa's wedding.  We were busy, having fun, being with family.  But we did not forget Brady and his family.

As we got Samantha and the kids dressed for the wedding, I thought of Brady.
As I did Samantha's hair 5,000,000 times because she kept turning her head or pulling at it, I thought of Brady.
As we took pictures together, I thought of Brady.
As I pushed Sammy around in her wheelchair, I thought of Candice...Brady's mom.
As Callie pushed Sammy in her wheelchair, I thought of Brady's sister, Camryn.
As we passed the balloons that led us into the reception, I thought of Brady.
As I gave Sammy her medicine that night, I thought of Brady.

We didn't send our balloons off that day, but we did the next day, when the sun was shining and the sky was a beautiful clear blue.

As Callie let go of Brady's balloons, we both noticed how those hearts stayed close together most of the time.  When they got way up in the sky, the wind seemed to pull them apart, but then quickly after, they were pulled together again and stayed together until we lost sight of them.  I couldn't help but think about how symbolic that is of Candice and her baby boy.  Five short years, together, every minute.  And then one day, they are separated, but only for a moment.  Does it feel like a moment?  How could it?  It must feel like eternity, this physical separation.  But what I put my faith and hope in is my strong belief that we are always close by.  Even if we can't touch or feel our loved ones close by for now, they are close.  Our hearts can't be separated just by death.  And one day, that reunion...when the wind blows us back together...will be an eternal reunion.

Until then, though, we mourn and feel the loss, because we have loved so deeply.  We are human beings living a human experience that involves pain.  We help remind others that this mortal life is short.  We realign our priorities.  And we are there for each other the best we can be.  We hug.  We pray for each other.  We we let balloons go in the air for each other.  Because, sometimes that's all we can do.  That's all I really felt like I could do.  I don't know Candice or Brady or Camryn personally.  But I will always feel a connection with them and continue to pray for them.  They, as well as many of my friends who have lost their children, will need a lifetime of prayers.  And that, I can do for them.  And I will.

National Microcephaly Awareness Day

Today is National Microcephaly Awareness Day.

What does that mean to me?

It means that a little over 7 years ago I was blessed with an amazing little girl who would face many challenges.  Words like diagnosis and prognosis became a part of my nearly daily vocabulary as I wondered about these things myself, but also as I answered people's questions.

This day means that I have a daughter, my sweet dear Samantha, who has a head smaller than average...much smaller than average...but whose rosy smile and bright blue eyes take up her entire face!  What a blessing.  What a gift.  It means that people can see angels, miracles, and a glimpse of eternity through those eyes and smile.

It means I have a daughter who does not speak, which can be difficult.  But because of her lack of words, she also isn't limited by words.  I have a daughter who can speak directly to people's hearts.  Words don't get in the way of her communication.  And her message is simple.  She teaches sermons about love, compassion, patience, a loving Father in Heaven and a truly empathetic Savior who has experienced it all on her behalf -- on all our behalves.  She teaches about faith, hope, family, and reminds us that life isn't as complicated as it sometimes can seem.  It's all pretty simple when you cut the fat.

This day to me means Samantha.  Today, many people who love someone with microcephaly are wearing yellow.  I love that.  Today, I'm wearing Samantha.

On my arms when I hug her,
On my hip when I carry her,
In my hands when I brush her hair to the side,
On my legs and feet when I watch her struggle with each step and think about how easy it is for me to even stand,
In my heart...because she's my baby girl and will always be my baby girl.

She motivates me to be better.
She inspires me to try harder.
She is my constant reminder of where I want to be...and she's helping me get there.

  

Videos of Therapy

Happy First Day

Well, we're at Now I Can and Samantha is screaming. 

Awesome.

Yesterday was blissful.  I mean, truly.  I couldn't be-lieve how calm she was.  Stretches?  Suuuure.  Why not?  She was smiling and happy.  Yes, she complained, but she was so compliant.  Perhaps it was the lack of sleep last night?  hmmm  May have something to do with it. 

Yeah, this was yesterday.  I haven't even taken any pictures today.  I mean, why when she's just a fuss bucket?  So, perhaps she'll feel better soon when I give her a snack.  Poor girl though, she really did have a rough night.  Aaaand, as I type, she's already calming down.  Phew.

So, as of yesterday anyway, I was so impressed with Samantha's progress.  Meaning: last time we were here, she was sooo tight.  Stretching didn't seem to bother her as much.  Her biceps were much looser so they didn't have to pull as tight, and during some of these positions that she HATED last time, she was just chill...smiling, and cute as can be.  Way to go Sammy.

National Microcephaly Day

It's true.

They have one.

National Microcephaly Day

is today

September 30

This is what Microcephaly means to me:

A little over a year ago, a friend asked me to be a guest poster on her blog.  I was to answer the question "How do you do it?"  I wrote about Microcephaly and Motherhood.  You can read the entire article, but it's the last paragraph that really sums up my feelings about microcephaly.

~*~*~*~*~*~

How do I do it? Many days I can’t work on my projects. Some days bedtime still seems too far away. And my faith has definitely waivered. But the number one thing that keeps me going is the little girl with big blue eyes and rosy red lips. Samantha’s giggle warms my soul. Her smile makes my heart do little leaps. Her eyes tell me stories that I won’t hear in this lifetime. Her stumbling walk and awkward movements sometimes actually bring us great comic relief! She is clever and funny and really a joy to be around. Everyone loves this little girl! I want to be with her. I want to be by her side as much as I can. I want to be her Mom. I want to be her advocate. I want to tap into the potential within her and make her shine brighter than she does now. I want to teach her. I want to hug her. I want to kiss her little cheeks. I want to struggle as I put curlers in her hair. Tonight, I didn’t want to have to rock her to sleep, but as I did, I didn’t want to be anywhere else. I want her to know, even if she doesn’t understand the words “I love you,” I need to be certain that she gets it…that she feels it. I want to experience it all with her because she is my earthly angel and I’d rather laugh with her or struggle and fight than not have her by my side. Microcephaly and motherhood. Sometimes it really doesn’t seem so bad after all. Truly.

That may not be how I do it, but it’s certainly why I do it.

~*~*~*~*~*~

If microcephaly brought me this little gem, I'll take it.

I'll take the whole package.


You can find out a little bit more about Samantha's microcephaly on my Kidz post.

Chevy's Success

For those who have not heard, our Chevy's fundrasier for Samantha this past Thursday was an incredible success.  I was so overwhelmed at the outpouring of love and support for our little girl.  Many who could not attend sent checks or cash as a way to show their support.  Some ate at Chevy's for lunch and dinner!  You guys are incredible.  We have amazing friends.  But, also, for those who didn't even know us but came anyway...wow.  And thank you!

I had told Chevy's that I thought there would be a lot of people.  I'm not sure they believed me.  They were understaffed for lunch, so our friends politely waited.  Take-outs were abundant!  And dinner.  Woa, let's just talk about dinner.  I couldn't believe how many people were there.  Thank you thank you thank you!!!  We didn't eat dinner that night, just showed up and talked with people.  As I said earlier, it was an overwhelming experience to be surrounded by those we know and love, and to meet new people who wanted to know more about Samantha and this cause they were helping.  Fantastic and humbling.

This was a difficult fundraiser for me.  Back in high school, I led a lot of fundraisers, but never one for my own family.  I wasn't sure what to expect.  During a time when I've felt frustrated and discouraged about different things, I have felt the love of the Lord through the hundreds of people who have been rallying around Samantha and our family.  It's a feeling I've only felt once before this stronly -- the morning we sat in the "family waiting room" while Samantha had her head surgery.  At that time, when I was struck with panic and fear, I felt myself be lifted up in a way that felt as if I was physically being lifted in my seat.  I attribute that experience almost 5 years ago to the prayers of our friends and family -- many of who were at Chevy's last Thursday.

There is no way I can thank everyone personally who attended or ordered food that day.  So, in a small attempt to express our thanks, I had thank you notes on all the tables with a family picture.  At the front desk, there was another thank you note...unfortunately at dinner the manager didn't pass them out like they did at lunch (at lunch, the waiters put slid the notes in with the checks).  I don't have a copy of those notes anymore...I wish I did so I could put it in Samantha's scrapbook -- but for those who attended, thank you from the bottom of our hearts. 

And, for those who are curious.  That day, we brought in almost $4,000 worth of business to Chevy's.  That means, Samantha will receive a check of $989.33 towards her therapy!  Chevy's was very happy -- they even want to do it again for us in June.  I think we'll pass, but it was flattering nonetheless.

 

Kidz

There are a few people that I've recently connected with in the special needs world. I feel so fortunate to call them my friends. I've grown so much from their examples and faith. I met Tara awhile ago. She is an amazing mother. She also has a blog called Kidz -- a community for special needs parents. I am honored that she posted an article I wrote -- to be a voice among these great women that I'm continually learning from....

I've been thinking a lot about expectations I have, or don't have, for Samantha. I recognize that she is a gem of a girl. I do. And I believe it. But I have also recently discovered that I put limits on her because she has this thing called microcephaly, and because others have lower expectations for her. They have dictated my own expectations for her. I didn't fully realize this until about a month ago, and when I did discover this, I was so angry with myself. And I didn't understand how I, as her mother, who has been her advocate from the beginning, had limited her. Had set a cap on her progress. My expectations weren't as high as they should have been. And, like I said, I didn't realize this until I recently started to believe she had the potential to achieve more than I had been thinking...and then I realized..."why hadn't I believed this before?" I began a journey of trying to figure it out. And then I wrote about it. You can read about it here.

Everything has changed for me as I've changed my expectations for Samantha...and then I started to think...what if I did that in every area of my life? hmm Food for thought.