Easter

I am so tardy writing this post.  It seems like Easter was just last week, but I am well aware that it was almost a full two months ago.  *Sigh*. 

We dyed Easter eggs like every year in preparation for our egg hunt in the lawn, but this year we got to dye them with the Stoten kids, which made it even more fun.  My kids only hunt for the hardboiled dyed eggs.  The plastic ones are already in their baskets when they come downstairs in the morning.  We don’t make a big deal out of the Easter bunny, but I don’t take all the credit either.  It’s just kind of unspoken how those buckets baskets get filled with such an assortment of wonderful treats. 

I made these cupcakes that were supposed to look like eggs nestled in grass and chocolate covered strawberries that were supposed to look like carrots.  Some, but not all, of my ideas were gleaned from Pinterest.  Feel free to reuse them!

Their baskets do contain some candy, I’ll admit, but I try to be a little creative and throw in a variety of good things they don’t get everyday.  They got peeps and bunny tails (cotton candy) on a stick, fruit snacks, and bags of Cheetos that looked like a carrot.  Cheetos are the favorite forbidden snack in our home, so I had to give in for Easter.

Liam just got Puffs in his eggs, but he was just as excited as the older three!

The egg hunt is a huge competition for who can wrangle the most hard boiled eggs from the lawn.  Ari gets a head start, but other than that, all is fair in love and egg collecting.  My littles are so intense about it, you would think that those colored shells contained more than just overcooked eggs.  This is the third year in a row that we have done it this way, and each year they get more serious about the hunt.  After it’s all said and done, they actually eat every last egg.  I’m not exaggerating when I say that they eat at least four hard boiled eggs each, and for Gabe, the consumed count might exceed a half dozen. 

We usually save the spiritual and portion of the day for after the egg hunt (during and after church), but this year, it was Gabe’s idea to “act out” the story of Jesus’s death and resurrection before we could be allowed to enjoy any pagan rituals.  Gabe is and has always been my most religious child.  He reads bible stories for fun in his free time and he is the kind of kid who, when I’m trying to teach him a lesson, will relate the event at hand to a parable or a bible story.  He knows nearly every character in the Bible and the Book of Mormon (thanks to the books Grammy gave him :)) the way I used to know every kind of dinosaur.  And that’s saying a lot.  Of course my childhood dinosaur obsession never gained me any favor with the Lord.  He truly has a gift.

That said, under Gabe’s direction, I played the part of Mary Magdalene.  Jake was Jesus.  Ari and Bella were the two angels in Jesus’s tomb.  Marci and Leah were Jesus’s disciples (I’ll have to check with Gabe what the names were), and Gabe and Brian played Roman soldiers.  I messed up my part a little, but Gabe was really nice about it and gently informed me of what my correct lines were.  I’m making fun a little, but I was sincerely impressed.  I had no idea that he would initiate this, and I do think it really brought meaning to the morning.

Thank you to my sister, Marci, for being my back-up photographer and helping me document the holiday (I did not forget to plug you!).  No, seriously, I would never be in a photo ever if it wasn’t for you.

After we cleaned up, we went to all three hours of church – yay us!  And it was really good!  We then came home and had Easter dinner with just our little family of six ;).  They told me they wish it could be Easter every day.  So, I guess that means it was a great day :).

As Long As It’s Healthy - by Kate Leong

What I’m about to share is a topic that I have wanted to blog about and talk about since my twins were born.  I have hesitated, because I am not inherently a graceful speaker or writer (truly, if you know me, you know that I am a blunt person), and I feel strongly that this topic deserves to be conveyed with grace.

I got my wish when one of my favorite strangers, Kate Leong, whom I’ve quoted in the past, reposted an earlier post that said it as beautifully as could be.  Yes, she wrote my heart out yet again.  Rather than basically rewrite what she has already written so perfectly, I figured I would share the entire post, because everyone needs to read this.

As Long As It’s Healthy – by Kate Leong

We've all heard the phrase...and maybe some of you have even uttered it...

"As long as it's healthy!"

Usually this comes up when a woman is pregnant. "Do you know what you're having? A boy or a girl?" and the Mother will reply, "I don't. And I don't care - as long as it's healthy!"

For some reason, this phrase has always tugged at my heart...even LONG before I had children of my own.

Everyone wishes for a healthy baby. Of course they do. The phrase, in itself, is not a rude thing to say. It's become a universal catch phrase - and the intentions behind it are more ill-thought than ill-intentioned. We all wish for ourselves...and each other...and for the unborn baby...health.

But what if we don't get what we wish for? What then...

Today is the first ever "World Cerebral Palsy Day". It's a day that focuses on people with CP from all over the world. It's not just a day to bring awareness and education...but it's also a way for people with CP to let the world know how they want their lives to change. Today I will be sharing private home movies that I've never shared with anyone. (And I humbly ask for your sensitivity...)

I have been Gavin's "spokesmom" since the day he was born. I look forward to the day that he can tell me to stop talking for him - that I'm getting it all wrong. But until then, I will continue to do my part to speak up for him, speak out about him...and change people's perceptions and attitudes. One person at a time. Gavin has a diagnosis of Cerebral Palsy, but that is truly a small part of his life story thus far. If you are a regular reader of this journal of mine, you've already watched him accomplish far more than what we were told to expect.

I never cared for the expression "As long as it's healthy" before Gavin. But since Gavin's birth, the words have taken on a whole new meaning. I think, for the most part, the expression is used as a way to stay hopeful during a pregnancy. Everyone wishes the best for their children and their families. And we were no different.

This is me...standing in Gavin's nursery...right before we left for the hospital. Ed thought I was crazy, but I wanted to take a minute to videotape ourselves for the last time as a family of two (and one adorable dog). We had no way of knowing that I wouldn't be back in that room with my baby for a month...

The universal phrase... "As long as it's healthy"... well, one could argue that didn't happen for us. The silence and rushing around in the delivery room was a pretty good indication that all was not well.

I signed up to be a Mom. Just as I wouldn't say, "As long as it's smart." or "As long as it's good looking." or "As long as it's straight."...I didn't say "As long as it's healthy." To be honest, now that I know so much about genetics and chromosomes and all the thousands of things that could go wrong - I think it's a miracle that any child is born "perfect" or "healthy."

Once Gavin was born, I went right into Mom mode. I didn't feel disappointed or 'jipped'... I felt protective and concerned. And love. Although to this day I am haunted by this particular moment caught on film. I told Ed all through the pregnancy that I wanted a photo of Gavin in the delivery room. He took his job seriously and asked the nurse before Gavin was whisked to me and then to the NICU. I should have told him to forget it. I should have said to the nurses that I could meet Gavin later. Keep the oxygen on him, I should have said. I wonder if, in my selfishness for a hello and a picture, I deprived Gavin from time without the oxygen. I have been reassured a million times, but it's one of my biggest regrets.

As Ed and I spent time in the NICU that would become our home, we were overjoyed getting to know our son. Ed had never held a baby that small - or changed a diaper, ever. He jumped right in and did it all. He even gave Gavin my colostrum as soon as it came in. We called it "Liquid Gold."

I spent a lot of time doing Kangaroo Care and pumping breast milk so he would grow and get stronger and get closer and closer to going home.

For all intents and purposes, Gavin was many people's worst fear. Can you imagine? People who would say, "As long as it's healthy" didn't mean this.

So to all of you who are pregnant I say - don't be afraid to be me. And to all of you who are sitting in the NICU next to an isolette - praying that they will tell you that your baby is fine - healthy - not 'imperfect'... don't be afraid to have a Gavin. And to those of you who just got the diagnosis - Cerebral Palsy. Do not despair! Gavin, as many of you know, is the joy of our lives...and many others. He is in many ways just like other kids his age! He has favorite foods and favorite movies and favorite books and songs. He loves crazy amusement rides and the ocean. He adores his Daddy and his little brother. He is now making friends and riding a bus to school.

When we sign up to have children, we aren't guaranteed anything. They could be born with a disability or develop one years later. They could be born with a defect or develop defects of character as adults. They could be born in perfect health, or have a serious illness. The important thing is - they are ours.

We left Gavin's nursery filled with hope on September 28th, 2007. We welcomed him into the world with hope on September 29th. We brought him home for the first time on October 28th, 2007 and the three of us (and one adorable dog) learned together how to navigate our new world. And then six days before Gavin's first birthday, we were told he had Cerebral Palsy. But what did that mean, exactly? Nothing much, really. It sure didn't change the way we were caring for him up to that moment.

When I stop to think about that silly phrase, "As long as it's healthy," it kinda makes me sad. Because if I had wished for that...and my wish had been granted...none of us would have the honor of knowing Gavin.

That - and not a diagnosis - would be the biggest tragedy of all.

Wouldn't you agree?

Our Ari.  Healthy?  Debatable.  Perfect?  Indisputable.

Annual Raising Special Kids Party

When I think about what a perfect world would look like to me, the picture that comes to mind might be different than yours or that of most people, even.

In my perfect world, my child(ren) would have the same basic abilities as every other child.  They would be able to excel at everything they tried to accomplish, provided they put determination, hard work, and all their effort into their pursuit.  In the future, they could rely on themselves alone to meet their basic needs.  In a perfect world, all of my children could button their own jeans, run and climb and dance, speak and sing and write.  In a perfect world, my children would only be gazed upon by loving, appreciative eyes, and their inner and/or outer beauty would be the first things that people noticed about them.

Now, I don’t need a single human to remind me of what blessings I do have.  My children, all four of them, are downright amazing little souls.  No one knows this truth as much and as well as I do, and yet, people sometimes feel the need to go overboard on reiterating this.  I know, it’s hard to know the right thing to say.  I get that.  I am a just mother who loves her children.  I love them for who they are in this moment, wholly and completely.  I feel gratitude for them so frequently that it’s often distracting.  With this love, I want what every mom wants for her child:  only the best.  I want them to have every opportunity, every worthy experience, every valuable interaction, every chance to be, love, be loved, do, create, learn, and live.  My hopes and dreams for each of my children have not been hampered my their physical differences or ability levels.  So, I guess all this is to say that my mama heart will keep on yearning for my perfect world.

With that said, my second perfect world is a world in which many other children are just like mine.  Wonderful, yes.  Blessings, yes.  Differently abled, yes to that too.  In some cases, missing limbs or without words or wheeling around in chairs instead of skipping on their beautiful feet.  An almost perfect world, to me, is one in which my children can easily assimilate and even thrive… and not just on their level, but on every level, because this world would be brimming with accommodations and helping souls and other moms who “get it”.  This is not meant to be a cruel wish toward other little ones.  It’s a wish for a more understanding and enlightened place, and a more level playing field (and sidewalk while we’re at it) for my children.  (This relates especially to Ari, since Bella seems to take everyone by surprise at how she mightily overcomes every odd set in her path.)

Why am I divulging my secret, inner-mama wishes?  Well, once in a while, I get to visit what would be my second perfect world.  The almost perfect world.  The next best world.  The annual Raising Special Kids Party is one such place.  Here, everyone gets it.  We may not carry around the same labels and diagnoses, but we are all the same.  The caregivers and the parents and the volunteers and the siblings and grandparents and the kids… the very special (not just special needs), but very special kids.  We all can appreciate one another for who we are, with little to no concern for what our bodies can do. 

On this very special day for some very special kids, we played.  And we did a great job at it too.

All of my kids love Gatorade.  It’s the treat of the drink world.

 

Gabe and Bella competed in the games (like everything else).  Notice how she holds the bottle while spraying with her other hand.

  

I can’t blame this girl for wanting to smooch that face. 

Jake broke out his dance moves for our new friends at our lunch table. 

     

We were so happy to have Grammy and Papa there with us this year.  It was so special to have them join us in our world.

            

Just like the year before, we left the party feeling a childlike inner peace and lightheartedness that can be so elusive in the day-to-day.  It was so freeing to be there.  I can’t wait to go back.