I Miss You Too

"Mom I almost cried today at school because I missed you.....but I was a man and I held it in."

I love you DJ!

Taking One for the Kids

I absolutely love being a mom to my children.

Today is my birthday.

My four little kiddos all woke up early and kept my door shut so I wouldn't hear them in the kitchen.

They were cooking up a big surprise.  

All by themselves they made me breakfast in bed for my birthday.

And they spoiled me with presents that grandma had helped them pick out.

How could I not love them for that?

Then the boys tried to convince me that they should stay home with me for my birthday and not go to school.

We had to compromise on that one.  So I took lunch to them instead.

Getting one year older is not fun.

But watching how excited my kids are for me makes it all worth it.

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.

And It Starts Again

The exciting and dreadful day has returned.

The day when our long night time slumbers get shorter

and the longer days are filled with friends, learning and play.

It's the first day of school.

I love how they all pick out their clothes for the big day.

Alexandria carefully chooses an ensemble that makes her feel sparkly and adorable.

DJ prefers sport pants but decides to wear jeans so his teacher doesn't think he's a slob on the first day.

AJ tries on a few outfits the night before to figure out which one looks best on him, then asks me which one I like best.

Isabel picks the purplest new shirt she bought for school and goes with that.

It was an especially anticipated day for Isabel.

After being the only one home for the past two years she was definitely ready

 and counting down the days to her first day of afternoon Kindergarten.

I don't know what she was more excited about, school or riding the bus.

She gave me direct instructions to get a picture of her getting on the big yellow carriage.

The best picture of her though will forever remain in my memories not in a book because the windows were too dark to get a shot of her as she was excitedly smiling and waving through the glass.

That's when I started to cry.

She was happy so I was happy for her.

Thank goodness I know that I'll have another little one home with me soon or I might not have been able to hold back the tears in front of her.

There was no big news to report at the end of the day.

They all liked their teachers.

We've already had two of the three and really like them.

The only negative was that they didn't get afternoon recess.

It's just too hot.

Don't the educators know that when you start school in the beginning of August they are only making it harder on their students and teachers by trapping them all indoors because of excessive heat?

Really, school starts way too soon.

I think we would all benefit from another month of sleep and summer.