In the Eye of the Storm

Sounds a little over dramatic, huh?  That is how I feel right now.  I feel like I'm in the middle and all the emotions, fears, joys, etc of the last 12 months are swirling around me at 120 mph.

The fear, anxiety, and worry of what life lies ahead for my little girl.  How the world will perceive her?  Will it improve from now?  Will it be worse with the increase in prenatal testing?  How well will she communicate?  Will she communicate? 

The excitement of Hailey's first birthday.  We made it, she made it...we did it!  Together we made it through all the roadblocks and hurdles of this first year and we are stronger at the end of this first year.  We have overcome situations that we never thought we were strong enough to endure.  We handed our baby girl over to medical professionals and put her in the surgeon and God's hands to save.  We weren't sure she would be here for her first birthday (those thoughts cross a lot while your little one is having open heart surgery).  We have learned more about Down syndrome, PT, OT, speech, EI, low-tone, feeding issues, heart failure, nystagmus, gross motor planning, etc. than we ever cared to know. 

The pride we feel for Hailey.  This girl rocks!  I think back to her tiny little frame when she was taking 7 hours a day to drink 18 oz of milk a day.  How frail she appeared.  How much work it took her to just breathe and eat...but did that and pushed through therapy every week.  How hard this little girl works through therapy to accomplish little things that her brothers seemed to master effortlessly.  The girl is strong...she is determined...she is a fighter.

The pain we felt.  The grief we felt.  I thought our life was over when the doctor told me my little girl had Down syndrome.  She wasn't born "perfect".  The baby we dreamed about died that day and I was given a child I didn't know and didn't know what to do with.  I truly thought that meant forever we would be hindered in life because she somehow was not considered "healthy".  Ha!  Hasn't stopped us and our life is as normal as the next.

The sadness we felt (and still sometimes do).  When we hear someone, say the "r" word, make fun of anyone someone with a disability (media, movies, etc).  They may not be directing it at my child at the moment but it does feel like a slap in the face.

The anger we felt.  Why us?  Why Hailey?  Why not, the woman down the hall from us in the maternity ward?  Why not, the family across from us in the doctor's office?

The frustrations.  Dealing with insurances, doctors, therapist....trying to get the best care I can get for my child but dealing with all the political hoops that come with it.  All the red tape.

The joy....there are no words to describe the joy that this little girl has brought into our lives.  To watch her play with her brothers is the sweetest thing in the world to me.  Her face lights up as soon as she seems them and they start speaking to her.  She cackles at them and that makes them giggle.  The slobbery kisses she plants all over our faces.  Those dimples and those eyes.

The gratitude is two part...the wonderful network of people we have met because of Down syndrome.  People that I probably would have never met without Hailey's diagnosis.  They are a support system...my voice of reason sometime...my cheerleader when I'm down...confidantes because I can be 100% honest about my frustrations and feelings and they won't judge - they have been there too.  They have given advice when I'm at wit's end.

The gratitude.  She is healthy.  She is ours.  God gave her to us to take care of, to mold, to teach, to share.  She totally completes our family.  

Last, but definitely not least...the love.  I remember those first few days in the NICU.  My heart was broke into a million little pieces.  It wasn't supposed to be like that.  She wasn't supposed to be there...she wasn't my daughter (the daughter I thought I was supposed to have).  I knew I was "supposed" to feel a bond but it wasn't there at first.  I wasn't sure if I could love her the way I love her brothers.  I know that sounds awful, but it was almost an out-of-body experience.  My love for that little girl is just as strong as it is for her brothers.  I never knew how much you could love an individual until I had children.  I've been blessed 3 times...I never knew it would just continue to grow.

I'm not the same person I was one year ago tomorrow.  I see things different.  I see people different.  I don't see disabilities...I see the person or child  who happens to have a disability.  I am stronger.  I celebrate more.  I love more.  I'm so incredibly lucky...I have Hailey.

What mom?  I didn't do it!

You can't prove I did it!

Making a mess is hard work!

Hamming it up with an early birthday present from a wonderful mom friend that has helped me through this first rollercoaster year.  She has a beautiful little girl who also sports designer genes.