Mikey

Dear Mikey,

Today was a lot harder than I was expecting.  It started off hard this morning even though I wasn't sending the kids to school.  Your birthday is one of their favorite days of the year because there's no school, at least not for them. I know they will be forever grateful to you for your birthday.  I learned a few things that I will do different for your birthday next year.  The kids will go to bed earlier the night before.  I will have more things planned to do to keep us busy on your special day and no devices, except my phone for pictures.

I feel like there is something more we can be doing to celebrate you.  That's possibly why it was such a hard day.  But I need to remember that the little things that we do, may be the same every year but, they are the traditions that will help to bring our family closer together.  So we wrote on a balloon and sent it up to you again.  As it floated straight into the sun one of the kids commented, "it's going toward the light."  Mikey, you are my light. 

Then the balloon stopped.  Really, it wasn't moving and I knew you were waiting for me to get the picture.  So I took it.  It's hard to see but it's right above the trees.  Then it floated away.  That was it.  We ate cheesecake, a white, creamy, sweet treat that you would have loved.  Then we packed up and came home to play games and nap.  On the way home we saw a little three year old boy crossing the street on his bike with his mom so we stopped and gave him a balloon that he quickly tied on to his handle bars. 

 

Even though your pinwheel was spinning out of control at the cemetery and I'm sure you were there with us I think what was missing from your day was you.  I felt like I was trying to fill a bucket but there was no bottom to the bucket.  Everything I put in just kept coming out.  The bucket never filled and I didn't feel any sense of joy or accomplishment.  I couldn't see your smiling face, or hug your little chunky three year old body.  We were celebrating you but there was no you.  Then in the quiet of the night I did feel your arms around me and I'm comforted knowing that you are still here when I need you. Suddenly, the bucket was full.  I know you're not around a lot but I love the times when you are.  I love you and look forward to the day when I can put my arms around you!

 

Love you always and forever,

Your mom 

There Are Signs Everywhere

Hi Mikey!  It's your birthday today.  We went to go visit your spot in the cemetery. 

We brought a few new toys for you and made your spot shine.

Remember this cake?  I kept it in the freezer all year just so we could enjoy it again for your two year old birthday. It's hard to say "two year old birthday" because it brings images of a little 2 year old boy that should be toddling around our home carrying a plastic bat in one hand and a ball in the other or running down the hall zooming by us with a toy helicopter.  But you're not here doing that.  You are doing more important things.  We tried to do some of that important work here for your birthday too.

So since we can't pick you up and love you we sent you a balloon with our love on it, just like last year.

And just like last year you delivered.  This time it was two helicopters doing a low fly over just as we were ready to pack up and leave.  There wasn't another funeral going on, no reason for the fly over just a sign that you were happy and you wanted us to be happy too.  I got your message, two helicopters because you would be turning two.

And when DJ asked what does the helicopters mean I just replied, "it means Mikey likes helicopters." I think he liked that answer.

Happy Birthday Mikey!

We love you!

Signs

Remember playing the game when you were little where you look for the differences in two pictures?

Lets play that game again.  

See if you can see what's different in these two pictures.

 

Did you find it?

I'l give you a few more seconds.

Now you've got it, right?

It's the ceramic circle with Mikey's hand and foot prints.

Did you see it?

In the top picture it's facing forwards and in the bottom picture it's turned to the side.

Here's the crazy part.

It turns itself backwards!

I dust and face it forward and a few days later I'll walk in and it's turned around.

I know no one is touching it because I'm the only one who can reach it.

Remember how Mikey's heart was being pushed against his back?

His inside thoracic cavity was kind of backwards.

I think it's Mikey turning it backwards.

He's leaving us signs to let us know he's still with us.

Normally, when something keeps getting out of place it's annoying.

But seeing this turned around makes me smile every time.

Lived

"It's so fun to have my own baby that actually lived." - Isabel

She loves having Stella with us.

I think all of our kids appreciate her more than they would have if we didn't have Mikey.

They even tolerate and try to help when she cries.

It's making for one happy momma 

and one kind of spoiled baby girl.

It's awesome! 

I couldn't ask for anything more.

Happy Birthday Mikey!!

We met at the cemetery today to celebrate our baby boy's birthday.

The kids and Papi played some football.

We saw white and blue balloons floating above us, a sign from Mikey I'm sure.

You know how we love balloons.

It's our way of feeling like we can communicate with Mikey.

So when the nice people at Icing for Smiles asked us what we wanted on our cake we chose balloons.

Awesome how the balloons floating above us at the cemetery and the balloons on the cake were the same color.

It must have been Mikey's way of telling us he was there with us.

Isn't the cake adorable?  I loved it!!  A special thanks to the people at Icing for Smiles and the people of Let Them Eat Cake here in Phoenix who volunteer their time and resources to make cakes for families of medically challenged children.

Then, we made our own balloon and sent it up to Mikey.

I know he gets our messages.

I love when he answers back.

And look who I caught on camera smiling while dreaming about her big brother on this beautiful day.

He makes me smile too.

I love you Mikey!

Happy Birthday!!

Life is Beautiful

One year ago today I was in the hospital room waiting for a little bundle of joy to come into our lives.  I knew it would only be a short time he would be with us and I wanted to make sure to soak up every precious moment.

Today, I'm in my own room recovering from another stay in the hospital.  But this time I got to bring our bundle of joy home with us and I'm still trying to soak up every moment of her first couple of weeks here on earth.  These moments are magical.

Tomorrow is Mikey's birthday.  I miss him... a lot. It seems strange to miss someone that I only knew for such a short time.  But I did know him and love him as much as any of my children.  His spirit was familiar to me.

As I look back at a year ago I wonder how I was strong enough to let him go.  I know I'm not that strong on my own.  I've learned that we are given trials but we are also given help to get through those hard times if we trust in our Heavenly Father and let him guide us.

I remember him guiding us.

I remember feeling peace and comforted.

I remember knowing when the right time was to tell our children and having the strength to answer all their innocent questions.

I remember not wanting to sleep at night because I could feel the blessing of my baby's arms wrapped around me.

I remember coming home from the hospital after leaving my little boy knowing that there was happiness ahead.

I remember knowing that we had to continue to grow our family.

I wish Mikey could have stayed here with us. I wish I didn't have to lose a child. But I am thankful for the life he had and how he has changed me and our family.

Life is hard.  

But if we trust in Him. . .

Life can be beautiful.

December

December has draaagggged on.  Counting down days until the very last day of the month is making it last forever.  It's a good thing that we have been busy, busy, busy. 

Busy putting up lights.

Busy redoing my girls' rooms so little baby can move in.

 Busy making gingerbread houses and other Christmas activities.

 Busy finding Jingles in his shenanigans every morning.

 Busy with concerts and recitals.

Busy Christmas shopping.

(This was on 12-12-12 at 12:12.  What were you doing then?)

 Buy taking trips to Urgent Care that turn out to be nothing.

In fact the next day he decided the crutches were more painful to use than his foot.

Busy visiting Mikey.

I wish he could be here for Christmas.

 But finally, Christmas Break has come, two weeks of sleeping in.  Well, at least one week. Then baby will be here!! :)

 Until then we will enjoy the dark, lazy mornings and beautiful days.

Here's to hoping this week flies by.

10 Months

It's been 10 months.

I love this quote my awesome sister sent me.

"All spirits are in adult form.  They were adults before their mortal existence, and they are in adult form after death, even if they die as infants or children." - Joseph F. Smith

It reminds me of Mikey.  I held his physical baby body in my arms.  But he held me in his strong adult arms.  I look forward to the day when we will be able to embrace each other again.

Remember!!

Nine months.  While time doesn't heal everything it does make you forgetful.  Mikey is forever ingrained in my heart. But the feelings that I felt while he was here with us are becoming more distant.  Somehow through that rough trial there was peace in our family. I always want to remember the joy and the sorrow I felt holding him in my arms.  I want to remember that peace and that "warm" feeling, as DJ called it, that we felt in the hospital room while he was with us.  I want to remember being held in his arms on those long nights when I couldn't sleep.  Remembering these feelings encourages me to be better.  So, I've added "REMEMBER" to my quote board with a picture of Mikey.  I will do everything I can to feel him again.  So I will remember.

Heaven Questions Answered

Eight months...

We took dinner down to the cemetery to eat with Mikey.

Surprisingly the headstone had been set in.

What a wonderful eight month birthday present!

While we ate the kids talked about where is heaven.

"It's right here with us we just can't see it,"  Isabel cheerfully explained.

"If we have family that have died and we do something good then they can come be with us,"  AJ added.

I love my children. 

They make me happy, all five of them (almost six).

Things That Fly

It began with a short trip to the pet store a couple of months ago.

AJ took one look at those happy, chirping birds and he was in love.

He had to have one.

He begged.

He pleaded.

He finally won over Papi and made it hard for me to say no.

He was very patient as we searched online for a bird cage and a bird, and researched which kind of bird to get.

He wanted a parakeet, a boy, because they're not supposed to have as hard of a bite and there's a better chance of them learning to talk than with the girls.

Luckily, we found someone in Queen Creek who breeds parakeets and budgies.

So finally, today we were able to drive out there and pick out his bird.

But it didn't turn out at all like we expected.

I have one sweet, little boy.

As soon as AJ saw the six little chicks that were left he had his heart set on this little girl.

The breeder explained to us that she was a "special" budgie.

She never grew her tail feathers.

She never grew her wing feathers.

She can't fly.

She has an awkward little walk and a weak bite.

AJ didn't care.  He liked her.

I tried to explain to him that she might have some health issues and may not live as long, kind of like our angel, Mikey.

But he was okay with that. He wanted to help her.

He decided to look at the other healthy chicks that were there but he already had a "special" place in his heart for the "special" budgie.

The breeder let him have her.  He didn't have to pay for her even though he wanted to.

I was proud of him for loving this little birdie and wanting to give her a good life no matter how short it may be.

He was proud that his little bird could be held without flying away and that her bite didn't hurt.

On our way home we were talking about the bird and about Mikey and how sometimes bodies just don't form right.  

We came to a stop light.

I looked out the window and saw a red heart mylar balloon floating in the air directly in front of us. 

It was just like the ones that Mikey had sent to our door step a few months ago.

"Look AJ" I pointed out the balloon.

He smiled. "I think Mikey is telling me that he's happy that I picked her because he wants me to take good care of her."

AJ loves his new bird.  She never left his side until it was time to go to bed.

Little Budgie has found a loving new friend.

Perseverance

We must not hope to be mowers,

     And to gather the ripe gold ears,

Unless we have first been sowers

          And watered the furrows with tears.

It is not just as we take it,

            This mystical world of ours,

   Life's field will yield as we make it

               A harvest of thorns or of flowers.

                                  --Johann Wolfgang von Goethe

I spent Mikey's 7 month birthday by getting to know him a little better.  Sometimes, when I miss him I want to look at his pictures or take a nap with his blanket.  But other times I like to look up information on his condition just to remember exactly why he isn't here with us.

After they told us the devastating news about our baby we immediately did an amniocentesis to look at his chromosomes.  They discovered that he was missing a part of chromosome 11.  Although it was good to know that there was a reason that he didn't have half of his diaphragm it didn't help to fix it.  But the doctors thought it would be good to do another test to find out exactly what parts of chromosome 11 were missing.  They called me with the results of that test a few days after he died.  At that time it hurt too much to listen to their conclusions and they didn't really matter to me because they couldn't save him or bring him back.  But lately I've been wanting to understand it better and today I decided I was finally ready to know more and to cope with the details about those chromosomal abnormalities.  So I called the geneticist.

(This part is kind of technical.  Skip to the asterisks if you don't like sciency stuff.  I mostly just want to document it so I can remember.)

Diagram of Chromosome 11

Mikey had a deletion on chromosome 11 from 11p11.2 - 11p14.3.  WAGR syndrome is caused when there is a deletion around 11p13.  Potocki-Shaffer syndrome happens when there is a deletion around 11p11.2.  Some of the genes he was missing are WT1, which is responsible for the "G" in WAGR syndrome and possibly CDH (congenital diaphragmatic hernia), PAX6 that helps to develop the irises of the eyes and is the "A" in WAGR syndrome, SLC1A2, PRRG4, BDNF, EXT2, mutations or deletions of this gene cause multiple exotoses which are sporadic bone growths, and ALX4.  Of course, with a deletion that large there are other genes that he was missing but these are the ones I found today. His CDH was larger than any that I've been able to find and it was on the right side, which only happens in about 9% of CDH cases.

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I was surprised how fun it was to learn more about his physical body and some of the unseen problems he had. Without all those genes it makes me think it was a tender mercy he looked as good as he did when he was born so that his brothers and sisters could enjoy their short time with him and not be distracted by the way he looked.  I still miss him but knowing more about him reassures me that, even though I wanted to, it would have been selfish of me to try and keep him here with us.  We had to let him go.

I'm happy for the knowledge that one day 

the chromosomal deletion will no longer matter.
His little body will be healed. 

None of the genes will be missing.  

He will be perfect.

And after watering the furrows with tears
I will have my harvest of flowers.

I will hold my son.
I will feel his touch, he will know his mother's love.
I will feel his arms around me again. 

That is my reason to persevere.

The Final Product

It's here!! The headstone of our sweet Mikey.

I love how it turned out.

I'm waiting until next month to take it to the cemetery.

I kind of like having it here.  It's like we have something of his with us.

Sometimes I still feel him, like last night.

He whispered to me.

It was six months ago yesterday.

I miss him.

But remembering him makes me happy.

Five Months

Five months ago a little baby came into our lives.

He was only here for a moment.

But he changed our lives forever.

We finally decided on a headstone for Mikey.

Hopefully, we'll have it by next week.

We visited the cemetery yesterday.

It was a regular Arizona summer day, calm and hot.

But as soon as we drove up to his grave the wind started blowing like crazy.

AJ stood there and laughed as the wind blew his shirt out like a big balloon.

DJ pretended like the wind was knocking him over.

We know it was Mikey making his pinwheel spin with the wind to let us know he was excited to see us.

It's not fair he can see us but we can't see him.

For us we have to rely on our faith that he is there

and upon small miracles like the wind coming out of nowhere on a calm day.

I love those small miracles.

They make life more enjoyable.

Balloons

Remember how we sent a balloon up to Mikey for his birthday about two weeks ago?

Somehow these four balloons found their way to our front patio.

Isabel was convinced that Mikey had sent the balloons from heaven down to his brothers and sisters.

I'm not sure if someone brought their half deflated balloons to our door

or if they miraculously floated down from the sky.

But no matter how they arrived I'm grateful for the faith that my children have,

and for the knowledge that we have,

that we will see him again and he still lives

even if it's not here with our family.

He will always be apart of us.

10!!!

Momma Chloe delivered her puppies the morning of May 31, 2012.

We are delighted with 10 puppies, plus 1 surprising addition born 8 hours later that decided she wanted to live with Mikey.

It was sad but I'm glad he gets to share in the fun with us.

These 6 boys and 4 girls wouldn't let me sleep at all last night.

Luckily my kids took over this morning and let me sleep in.

It's worth it because these babies are adorable!

It's hard to ask but I have to for the mom,

please no visitors.

She get nervous when people she doesn't know are here.

And she's really trying hard to be a good mom.

Give her a few weeks and I'm sure she'll be tired of them by then.

Let me know soon if you want one.

They are AKC registered labradors.

And Utahns, don't count yourselves out.

If there are a few people from Utah who want one you may be able to talk us into getting out of this heat and bringing it to you. :)