Letting Go

Somebody once told me that parenting is the art of letting go.  It could have been my dad.  And I thought about it in terms of my family.  Three typically developing kids going through the normal stages of life.  I'm not particularly good at letting go or facing change but as we started this parenting journey, I was sure I could handle anything.

When Ava was born I pretty much kept her all to myself.  Yes, we had some rough new born screaming days when I gladly handed her off to somebody else but for the most part we spent our days (and nights) together.  I loved being home with her.  I loved watching her grow and develop her little personality.  I loved experiencing life through her eyes.  The night I went into labor with Emmy, I went into Ava's room and watched her sleep for a little while.  I cried because in a weird way I was letting go.  She was going to become a big sister and although I knew that was such a great gift, it was going to change things.  This saddness was fleeting and quickly turned to excitement when our sweet Emmy arrived!

The first year of Emelia's life was such a wonderful time.  She was an easy going baby and fit perfectly into our family.  I felt so blessed to have two healthy girls.  Life could not have gotten any better.  And in that first year I pretty much kept Emmy all to myself.  I loved everything about her.  I nursed her, held her, giggled with her and thought about her future.  I watched Ava love her and was so overjoyed that they would have each other.

After about a year, Ava at 3 1/2 was really ready to venture out to preschool twice a week.  Yes, I had to let go a little but the girl was ready to go!  I knew I would keep Emmy home with me the extra year because her birthday was late August.  She wouldn't start preschool until she was already 4.  The thought of all that time to watch my Em develop, to take her to library story time, to just be her mommy brought me such joy.

It was around the same time we began to worry about Emmy's development.  She was a year and hadn't started trying to crawl or pull up on things.  We brought up our concerns to the pediatrician and she suggested having Early Intervention come to our house to do an evaluation.  Wow, that was only the beginning.  I wasn't thrilled about having therapists come to our house to work with Em but she needed help and I didn't know how to help her.  I watched as our PT and OT tried to get her to do things she had such a hard time doing.  I watched her scream through so many sessions.  I wanted to scoop her up, tell the therapists to leave, and keep her all to myself.  But I didn't.  I kept up the therapy sessions and worked with her EVERYDAY to get her moving.  When she finally started walking at 26 months I could not have been prouder!  She had worked so hard and I was confident she would only progress from there.

The therapy continued and at least three times a week I had to let her go.  She wasn't ready and I wasn't either but we didn't really have a choice.  I know this sounds weird but I would get her from therapy sessions and for the rest of the day she smelled like the therapists perfum.  I HATED this.  I didn't want this therapist handling her.  It should be me.  Things shouldn't be this hard for her.

And as she neared three and we received the Rett diagnosis I had to completly let go.  She needed so much therapy and had aged out of the Early Intervention program.  She would now receive her therapy at preschool.  The preschool I wasn't ready to send her to.  I had to watch her lose her speech, her ability to flip through her beloved books and her ability to play with her toys.  I had to let go of what I thought her future might hold.  This letting go has been the most painful so far. 

I have had to open my hands, release my tight grip and trust in God's plan for her life.  Whatever that plan may be, I have to find a way to make peace.  And in a way letting go of the worries, of the future of the what-ifs has been a good thing.  I am simply UNABLE to think beyond the near future.  If I do, I will drive myself insane.  What if she starts having seizures?  What if one day she isn't able to walk?  What if one day she never wakes up?  Erase it all.  Focus on today and find a way to HOLD ON.  Hold on to the idea that one day there will be a treatment.  One day there will be a cure.  One day I will hear what she has to say!

I've realized this parenting thing is truly an art.  Just when you think you've got the hang of it, you have to slowly let go...of all the control you THOUGHT you had.  You have to open yourself up to whatever life has in store and make peace.     

All Things Kung Fu

Ever since Ava watched Kung Fu Panda with my brother's three boys, she's become obsessed with all things Kung Fu.  She came home from school with a library book entitled "Welcome to China" and had me read and re read the martial arts section.  She sat and copied Chinese letters.  She wants to be Tigress for Halloween.  And, we rent the movie "Furious Five" because there is a section that teaches you some Kung Fu moves....




Doing "The Crane"

c.30_31delCG

One day I opened the mailbox and found a letter from Emmy's neurologist.  I had been waiting for this paperwork even though I knew it wouldn't tell me much about Emmy's prognosis.  For some reason I NEEDED to know the genetic test results.  I all of a sudden wanted to become an expert in MECP2 mutations.  It must be a control thing.  I had no control over the fact that my little girl was slipping away and I needed control over something.

I opened the envelope and proceeded to read a report from the University of Chicago genetics lab that had run the test.  Ummm, what the *&)% is c.30_31delCG?  Having only touched on genetics in my college biology courses I was completely lost.  The whole report read as if it was in a foreign language. 

Let me back up a little.  In most cases of Rett Syndrome, girls have a mutation on a gene called MECP2.  For those as fuzzy as me on the topic...girls have two X chromosomes, boys have an X and a Y.  MECP2 is located on the X chromosome.  Girls with Rett have one X with a healthy MECP2 gene and one X with a mutated MECP2.  When boys have a mutated MECP2 gene on their X, they are much more severly affected.  Most do not survive.  That is because they don't have the back up copy of the healthy MECP2 gene.  When a girl is conceived and cells are multiplying something called X inactivation occurs.  In each cell in their body one X is shut off and one X stays on.  This accounts for the various severity levels in girls.  If a girl happens to have more of the non-mutated X's turned on, their symptoms are milder.  It is very difficult to test for X inactivation patterns because blood taken from your arm may not reflect what is going on in the central nervous system.  A girls mutation type doesn't necessarily tell you the course of the disease either, because of X inactivation. 

Basically, finding out the mutation type wasn't going to tell me anything but I still needed to know.

After a LONG conversation with a genetics counselor, I now know what c.30_31delCG means.  I'll try my best to describe it in simplest terms.  Take a piece of paper and draw a long line.  This is the MECP2 gene.  Along this gene there are hundreds of thousands of things called neucleotides.  The neucleotides are denoted by either an A, T, C or G.  Each gene has a different letter sequence but the letters need to be in a specific order for the body to read the gene correctly.  It's amazing stuff.  Well, on Em's gene the C that is supposed to be number 30  in the sequence and the G that is supposed to be number 31 are missing.  Because these two TINY little pieces are missing the body can't read the gene correctly.  Now, people have different letter sequences on their genes all the time without any problems.  As the geneticist put it, that's what makes people unique.  But girls with Rett happen to have these mutations in a very sensitive part of the gene.  I could keep going but I'll stop there.  My brain is starting to turn mushy as I re read this trying to determine if I'm explaining it clearly.

So there is the science lesson for the day.  The body is an amazing thing.  And, I've learned that even though I understand the genetics behind Rett Syndrome...I still have no control.  I have to just let go and enjoy the ride.

First Soccer Game!

Had to share these pictures of my sweet little Ava.  She absolutely loved playing her first soccer game this past Saturday...

With her little pals from preschool

At this age they all chase the ball at once...it's hysterical

There's only one reason...

...this is in my house.  It's disgusting, horrible stuff.  I refuse to even look at the list of ingredients for fear I won't be able to pronounce any of them.  But, when I have morning sickness this is one of the only things that sounds good.  Some pretzels and good ol Fritos fake cheese dip.  I first discovered this in college, freshmen year at Harrison Hall.  I can't remember the name of the little store in the dorm that sold it but you could get all sorts of goodies down there.  I didn't ever think about it again until I was pregnant with Ava.  I was at Jewel and feeling so so so very sick to my stomach.  Nothing sounded good.  Then I strolled down the chip aisle and when I saw it I immediately grabbed it...something that looked appetizing!  Since then, every pregnancy, I had to have it in the house during those first nauseous weeks.

I am now past the 12 week mark and feeling great!  Went to the doctor yesterday and held my breath while she searched for the heartbeat.  But, she found it quickly and said it sounded strong, around 160 or so : )  John and I are so unbelievably happy to be having another baby.  I could care less if it's a boy or a girl, I just want healthy.  People say that all the time as kind of a passing statement.  I know I did.  I now pray for it every day.  I pray all those thousands of genes are all lining up, just the way they're supposed to.  I mean really, it's amazing there are so many functioning people walking around.  I've had 5 pregnancies, 2 children and 1 that's healthy...good gracious.  So, keep this little Foster family in your prayers and I'll keep you up to date on this HEALTHY pregnancy.

 

Thankful

I started writing this long winded post about Em's ups and downs over the past months.  Every time I sat down to finish it I ended up in tears.  I guess this is all still too new.  The wound is still healing and I can't mess with the scab. 

Since I'm not able to share the downs right now I decided to just share the ups.  This past weekend we met a great group of families, all living in the Chicago area, and all with girls Em's age with RS.  They are an amazing group.  Unfortuantely I forgot my camera but don't know if I'd had time to take pictures anyway.  I wanted to just spend the time talking to these sweet girls, understanding how they operate.  I had a million questions for the other parents and could've listened to their stories forever.  Stories of heartbreak and hope.  They were our story too.

The evening with our new friends coupled with the long weekend with my husband home (ahhhh) allowed me to focus on the fact that there is so much for which to be thankful...

The beloved tire swing.

Look at that grip.  Look at that smile : )

Daddy.

Obstacle courses.

My faithful walking companion.

Sweet neighborhood kids raising money for Emmy's birthday fundraiser.

And, last but not at all least...Emmy going on the potty!!!!!!!!!!  I dragged the potty seat out of the basement the other morning.  I had not been excited about it because I figured it would be a long, difficult process.  It was after breakfast and Ava and I sat Em on the little potty.  She looked adorable sitting there.  We started reading her some books and then bam. poo poo.  We danced around and made a big deal about it.  We gave her potty presents.  She was so proud of herself!  She's been doing a fabulous job ever since.  Right now we just sit her on when she thinks she has to go.  Now, her telling us she has to go will be a whole other team to tackle.  But for now, this is just fine.

First Days of School

Both girls have started school now which means I am childless from 9:20-11:50 each day...it's so strange!  Ava started Kindergarten and Em started her first year of preschool.  They go to the same school and I drop them off and pick them up everyday.  I wasn't brave enough to send Em on the bus yet!  She's still my little peanut.  Ava loves Kindergarten...she was a little nervous the first day but warmed up quick.  Today is only Em's second day but so far so good.  I had a hard time dropping her off yesterday but she was all smiles when I went to get her and the teachers reported she had a great day!  I know preschool will be a wonderful thing for her, it's just been a hard process for me!

                                                    Ava working hard on her first project

                                                      Ava and her new K teacher.  Ava told me,
                                                      "mom, she's really good with kids!"

                                                      Back pack on and ready to go!