The Hailey Herald

The Hailey Herald

Wednesday, February 29, 2012

Thanks Mom....what a great birthday present!

I've been having good birthday celebrations. Mom has even given me cake twice. is AWESOME!  I wish they would give it to me all the time but Mom said not to get used to it.  I have received lots of good presents.  I have a baby stroller that they say I'm supposed to walk with.  I can stand but I'm not quite sure my legs know how to move once I'm up there.

I also got a really cool car to drive around outside while the big kids ride their bikes.  Mommy said something about it making me work on my core but I'm not quite sure what she's babbling about.  I just think I look good driving it :-)

My big brothers picked out clothes for me.  They thought I needed Minnie shirts for our trip to Disney this summer.  I liked them because they are sparkly.  My favorite gift was the wrapping paper.  I could have played with that all day but big brother Ian kept taking it away from me.  He said he was afraid I was going to eat it.  I just liked the sound it makes.

My birthday abruptly came to an end when my mommy woke me up at 5 a.m.  I like to get up early but my earliest is about 7!  Then she said I had to eat breakfast.  Really, mom!  I wanted to go back to sleep.  I ate all of my cereal and prunes and then snuggled with mommy on the couch.  At 7 she woke me up again and told me I had to drink my milk.  I never did understand why she made me get up and tell me I HAD to eat until later....  I think I saw mommy eating lunch but she wouldn't share.  No matter how long and hard I screamed and yelled at her.  She wouldn't get me more food.  She gave me some strange orange stuff.  It was okay.  I drank it because she wouldn't give me anything else.

Later we drove to Children's.  The nurses made me strip down to my diaper.  I really wanted to leave my birthday shirt on but they said I couldn't.  The nurse then squirted some yucky stuff in my mouth and I started to get really sleepy.  I don't remember anything after that until mommy woke me up.  I kept trying to go back to sleep but no one would let me.  Mommy said while I was sleeping they checked my heart.  The cardiologist said it looks great.  The patch is doing its job.  She also said we need to watch the pressure on my left side of the heart but the cardiologist isn't concerned just yet.  The audiologist also ran tests while I was sleeping.  She told mommy that I can hear perfectly.  I could have told her that.  I just choose to ignore everyone once in awhile.  I like to be by myself sometimes. Those brothers of mine are quite loud!  I was so very sleepy the rest of the day but Tuesday I was my old self again.

Well....that was until Mom told me I had to go to the pediatrician and I needed shots.  I thought this was my birthday week....yucky medicine that makes me sleep and shots...then they took blood from my big toe....not the best birthday presents if you ask me!  The nurse didn't think I could do a bunch of stuff but mommy corrected her.  Mommy seemed a little miffed at the nurse but quite pleased with herself when she corrected her.  I even added to it by 4 point crawling on the exam table in front of the nurse.  I guess that will show her not to under estimate what I can do.  My mommy was really proud of me then!  Her and my big brother started cheering.  Wonder what the big deal was?  The doctor said I'm growing well (I weigh 18 lbs 4 oz, but the hospital said 18 lbs 8 oz the day before) and everything else checked out.  Mommy seemed very happy when we left. 

I have more family coming this weekend.  I bet that means more presents and lots of attention!  I'm not sure what the big deal is about turning 1 but everybody seemed excited.  I saw mommy cry a few times and looked at me kind of funny but she always followed it by a big hug and kiss so I guess everything is okay!

It's time for my nap so I will talk to everyone soon!

Another birthday outfit.  Mommy said we will celebrate all week!

I think I'm very funny!

Ian wouldn't share the iPad so I decided to take it myself!

Saturday, February 25, 2012

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 voice of reason 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.

Wednesday, February 22, 2012

Caught off guard

I hate it when I know something is's inevitable...but when it does, I'm caught off guard.  I knew after all the talking about how far I've come, how far we've come, how far Hailey has come, that I would still shed tears over her first birthday.  I just expected that they would come on Sunday, on her first birthday, but they didn't...they came today.  I only hope they are all gone and I don't have to go through it again.

I started the day as any other Wednesday.  The boys got ready for school and I dropped my middle son off at preschool.  Hailey and I headed to Ash Wednesday mass.  Hailey was her social self...jabbering away, finding people in different pews to wave at and smile coyly at.  She did share a not so nice look at the nun that placed ashes on her forehead but I think that was because her bottle was interrupted.  After church, we stopped for a few groceries and picked up my son at preschool.  I grabbed the mail, opened an EOB and that is when it started.  I had a sticker shock from one of Hailey's isn't a huge deal in the whole scheme of things.  We've had larger bills and I'm sure there will be larger ones down the road.  It just hit me wrong today so the tears started.  I called our insurance company and honestly, spoke to the rudest representative who I have ever dealt with...I worked in customer service in my pre-children life so I know how tough the job is but wow....she was not nice.  I can't even type the words I used to describe her to my husband.  After she stopped arguing with me, I said bye and hung up.  I know she was still talking as I pushed "off" but I couldn't deal with her any longer.  I don't consider it hanging up on her if I said bye, right?  I cried a little more.

My next course of action was to call Children's.  25 minutes later...I've gotten now where.  No one can give me an estimate of her next on earth can 3 therapist charge $1600 for a two hour appointment?  I like them and they are good at their job, but seriously?!?!?!?!?!?!?!?  So, I hung up the phone...more tears.

I sent my husband an email...more tears.  I spoke with a friend that is battling issues of her own that are totally different but yet the feelings I'm going through are exactly the same...more tears.  I seriously cried for 3  4 hours.  Since Hailey's surgery 7 months ago, I haven't had any of the full, all-out, can't control, hyperventilating cries.  Today I was close to that.  Everything has made me cry.  Talking about crying has made me cry.

Yes, I am extremely frustrated with medical billing, insurance and I guess in a way Down syndrome because it is what makes Hailey need all the extra medical assistance.  It is so hard as a parent to want to do everything I can to make my daughter an asset to society, but have doors slammed in my face by insurance and the medical world.  Neither side wants to work with the other to help parents achieve their goals.  I do not know how families with more than one child with special needs do it, I don't know how families with children that are inflicted with serious diseases, cancer, etc, handle it.  I feel so sorry for them.  That doesn't sound right.  I empathize with them.  I cannot imagine how much worse theirs are.  It is just so frustrating.

(This is where I started back up after dinner, baths and bedtime)  I need to confess wasn't just dealing with all of the medical garbage that led to the tears.  It was someone's upcoming birthday.  I thought I was doing good...planning, invites, decorating, menu planning, searching for items, buying presents...nothing has led to a tear, until today.  I think the feelings started at church.  I remember so vividly standing in the hospital chapel for Ash Wednesday service last year.  I remember trying so hard to focus in a overly crowded room of total strangers trying so hard to not cry because all I wanted as my baby home...I still wanted the baby I had dreamed about.  I never thought I would get past those feelings.  I never felt that I would move on.  I think the frustrations of dealing with insurance and the hospital just aggravated those old feelings and today I was mad all over again. 

I feel bad when I lose myself in emotions like I did today.  I always feel that it makes me weak...I really don't like not being in control.  I feel like it is an insult to Hailey to relive some of it.  I had a wise friend tell me today that possibly I am being too hard on myself.  That all the memories are only a year old and they are "anniversaries" so to speak of a very challenging year.  Maybe she is right.

Well now that I have emotionally drained myself for the day, I guess I will go to bed.  Maybe tonight I will sleep.  Can you tell how I lost some momentum after a break?  Everything seemed to fade a little and I was able to put things more into perspective.  Hailey's nonstop laughing for about 30 minutes did quite a bit for momma's mood!

You can see the faint remains of her ashes on her forehead.  I think she wiped them all on me!

I was finally able to get pigtails!
She's not certain about them.