Letter to Myself...Summer Blog Hop

This is my 3rd post in the Summer Blog Hop.

Dear Michelle....February 2011,

Enjoy every last second of this pregnancy.  I know you have decided it's your last, but you won't have as much time as you think.  This little girl that you have had ultrasound techs verify is a girl 5 times, is going to surprise you 5 weeks early.  There is something else I need to tell you.  The doctor is going to tell you he suspects that she has Down syndrome.  Don't freak!  It is NOT the end of the world.

Yes, your life will change.  She will need check ups from doctors that you don't have with the boys.  She will need to be watched closer those first few months because she will go into heart failure and have open heart surgery.  Yes, you are strong enough.  Yes, you can handle it.  She is a rockstar and will do fabulous!  You will leave the hospital 72 hours later with a different baby.  She will still look like Hailey and sound like Hailey, but she will be so full of life.  She will have a little reminder (her scar), but it will be a happy reminder.  She is a fighter and she is strong.  It will be a symbol of that and a symbol of her second chance at life.

Don't worry about what others think of Hailey.  You will be surprised.  She sort of demands attention where ever she goes.  Even if you try to be inconspicuous...she will draw attention to herself.  She loves attention and will wave and say Hi to anyone who will look her way.  You will see that she is quite the girly, girl.  She will like all things sparkly...shoes, purses and yes, jewelry.

Yes, her milestones will be delayed compared to the boys, but they are so much fun.  She works so hard at each one of them that the entire family will celebrate.  You need to chill though.  You can wish her or will her to do things.  Sitting, crawling, walking, talking...they will all come in her own time, not yours.

Forget about wasting time worrying about how her brothers will be with her.  They will love her unconditionally and she will drive them absolutely crazy.  Would you want it any other way?

Life won't be all unicorns and rainbows, but I don't think you will even understand that.  Hailey will exceed all your expectations, but she will also change your expectations.  It won't all be easy.  Her disability will challenge everything you believed in.  It will make you change your mind about certain things and it will drive you crazy at times.  You will learn more in those first few years than you have in the past 10.  Medical jargon, diagnoses, therapy, IEPs, waivers, and the list continues.

Don't worry though.  You aren't in this alone.  Everyone is still here.  Your family and friends.  They all love her and think she's perfect (well most of the time).  You will also have an entirely new set of friends and helpers.  You are will soon be part of a new family.  Your Ds family.  They are the ones that have gone through all this before or they are the ones that are going through it with you now.  They understand.  They've been there.

You are in for one heck of a ride.  Enjoy it.  Life's short.  Oh...one last thing.  Your family will look just as normal as the next!  Here's a glimpse of what's too come.  She's spunky, sassy, a show off, funny and absolutely full of life!

Please check out other posts in the blog hop...below.

Coming to Terms...Summer Blog Hop

This is my second post as part of the summer blog hop.   I haven't decided what was worse...hearing Hailey's diagnosis or coming to terms with the diagnosis.  Everything about Hailey's arrival put this mom in a tizzy.  I am a very OCD, take control, plan everything out kind of person.  I had a giant to-do list that needed completed before Hailey's arrival.  My csection was already scheduled because I had a difficult delivery with my first and an emergency csection with my second.  I was not only considered advanced maternal age, but also high risk because I had high blood pressure.  We had all the kids' bedrooms painted and redecorated about a week before Hailey was born.  My surgery wasn't scheduled until March 21...my brother-in-law's birthday.  I had 5 more weeks to finish the last of the to-do list completed.  Make a few freezer meals (csections aren't fun to recover from), make sure everything was in good order for the boys' school, basketball season would be over for both my husband who referees and my son who was playing, a few more items needed purchased for Hailey for home, few more items for my hospital stay, etc.  I feverishly made that list out the night before I went into labor.  My husband laughed because I was so adamant that we discuss the list.  He questioned if I thought our peanut was coming early.  I replied, "Without a shadow of a doubt.  I have a feeling she will come in a couple of weeks."  Well, I was right that she was coming early, but I never would have dreamed she would make her debut less than 24 hours after that conversation.

So you see, from the start she rattled my world.  She came 5 weeks early.  She came natural and not csection.  She didn't nurse.  She had Down syndrome.  She had a heart defect.  All things that I didn't "plan"...all things that were not on my radar.  All things that were 100% out of my control.  I cried a lot those first few months for many reasons.  There were dreams that I felt were never going to happen.  Some of those dreams realistically, will probably still never happen.  I thank God every day that we had a very calm, knowledgeable neonatologist.  I will never forget his initial advice.  He gave us two websites to do all of our research on:  The DSAGC (the Down syndrome association of Greater Cincinnati) and the Cincinnati Children's Hospital website for both a VSD (her heart defect) and about Down syndrome.  He forewarned us that many printed books could be over 10 years old and then that articles on the internet can also be old and out-dated.  He also told us to not look at an adult with Ds and think that is our daughter's future...to not even look at a 10 year old and think that is what our future holds.  There is no telling what our daughter's future holds because every year, every day there are changes in technology, education and the medical field that can change her future.  That was good advice.  Nothing was grim.  Unfortunately, it didn't help those first few months.  At first I cried about Ds and what it had stolen from her.  Then I cried about her heart defect.  The heart defect would eventually kill her, not her diagnosis of Down syndrome.

I then had a job.  Something I could control.  I could make her strong enough for surgery.  I could help her gain weight.  It was my mission.  Unfortunately, I put too much pressure on myself and I failed miserably at it.  I set my alarm to go off every three hours.  I would wake up, pump, feed her, put everything away and start over again.  Towards the end, it was taking Hailey over an hour to finish a 3 ounce bottle and many times she wouldn't finish or she would throw up part of it.  I couldn't do my job.  She wasn't gaining weight and I held myself personally accountable for it.  Yes, in hindsight, it wasn't my fault and boy, was I sleep deprived!  After open heart surgery, I breathed a little easier, but then I had nothing to hide behind.  I had to face Down syndrome.  I called our local Ds chapter and someone came to my house to meet with me.  I reached out to the names and email addresses others had given me over the past few months.  I reached out to a priest from my hometown.  He helped me through the holes that her diagnosis had made in my faith. I also read blogs written by moms who had children with Ds that were a little older than Hailey.  They were taking vacations.  They were going to baseball games.  They were going out to dinner.  They were "normal" families.

Something else happened during this time....I fell head over heels in love with my daughter.  Yes, I loved her before, but I started to see her for who she was.  I started to see her personality.  The spunk inside her.  The determination.  I heard her laughter.  Her energy.  I didn't see Down syndrome.  I didn't see a disability.  I only saw the beautiful, blue-eyed, dimpled-smile little girl.  I saw only Hailey.

Hard to be upset or sad with this gorgeous face looking back at you.

Check out other blog posts about "coming to terms" here.

Disability...My Connection

I've spent the last few months focusing on my health and family and "might" have neglected my blog.  I've decided it's time to dust off the laptop and get back at it.  I'm several weeks late, but decided I would finally contribute to the Summer Blog Hop that my friend Meriah started here.

The first topic is my connection with disability.  I'm going to be honest.  I had ZERO emotional connections with disabilities before Hailey was born and the neonatologists uttered the words, "Your daughter has characteristics that are common with children with Down syndrome".  That's not to say I had never met anyone with a disability.  I saw the students who were in the special education class.  We never had any interaction with them.  There was a young man with Down syndrome that worked in our cafeteria, but I didn't know him.  There was a group home run in the house beside our church.  I saw the individuals at church every Sunday, but again...I didn't know them. 

I think that is why Hailey's diagnosis was such a shock to me.  I didn't have current information.  I didn't have relationships to take knowledge from.  It was all information from when I was younger...almost 20 years prior.  The only thing I remember from all those experiences was segregation.  Individuals that seemed to be kept away from everyone else.  I didn't want that for my child.  I didn't want that for my family.  I knew that I didn't want a disability to define my daughter...I wanted more.  I didn't want people to pity my family.  I didn't want pity for my daughter.  I wanted her to be an active participant in society.  I wanted her loved.  I wanted her to know she was wanted and loved.  I wanted our family to be "normal" and do "normal" family activities.

My goals and dreams for Hailey's future are ever evolving, but so are those for my boys.  The initial wants are still there.  I want her loved and known for the person she is.  For the qualities and values that we raise her with...not because she has Down syndrome. 

You can read other posts from the Summer Blog Hop here.  See how others are connected.

Making Health a Priority

As a mom, it is pretty normal to put yourself on the back burner and put the kids first.  It's what we do, right?  It's what we are expected to do, right?  Well, unfortunately, I was doing that even before I had children.  I didn't put my health first.  I have had a weight issue as long as I can remember.  I remember it as early as 6 or 7.  I was an emotional eater and portions were always too large.  I did ok through junior high and high school.  I wasn't fat, I wasn't thin.  I didn't exercise enough.  Enter college and the eating was worse and the exercising was worse.  I'm positive I added the freshman 15 or maybe even 20.  After college, I entered the workforce.  I worked then went home.  I have always eaten a lot of fruits and veggies, but I've also always eaten sweets, drank pop, and ate too many carbs.  Then came four pregnancies. I never gained much with the kids and I always took it all off.  I would gain 5 here and lose 5 there, but nothing more and nothing permanent.  I would focus on eating and working out for a week or two here and there.  It was always short term and a quick fix.  As a result of the weight and eating, after I had my babies, I didn't go off of my blood pressure medicine.  It was a permanent fixture in my daily routine.  I truly thought I was the size I was and nothing was going to change it. 

Back in February, my sister-in-law asked if I wanted to do a 21 day clean eating program with her and another sister-in-law.  Sure...why not?  What's the worst that would happen?  I knew that my eating needed to change, but never took the initiative to do it and it's always better to suffer together, right?

With the eating program, there were 30 minutes workouts.  The first few days seemed like torture.  I had given up soda back in October so drinking strictly water was easy.  Reducing my carbs were a bit more challenging.  I did find out that I wasn't eating enough protein nor were my veggie and fruit servings big enough.  21 days actually passed quickly.  There were days that I wanted to sway off of the program, but I stuck to it.  At the end, I had lost 15 pounds.  I felt better about myself and was stronger. 

I don't follow the program as closely now, but I have lost a total of 40 lbs since February and have dropped 3 sizes.  I would like to lose 5 more, but we shall see.  I am the size I was in high school and a few pounds lighter than then.  I have done a major overhaul on my eating.  I crave healthier, cleaner foods.  I search for recipes for my family that are better for them and me.  I love finding new recipes for vegetables and whole grains.  I know some of my friends laugh at some of the foods I've tried, but honestly, food tastes better now.  I eat oatmeal every morning....before this, I loathed oatmeal!!!  My new favorites right now are Greek salads and sweet potato nachos.  Spaghetti squash isn't too bad either. 

I had a yearly physical last week with my doctor.  My bloodwork was fantastic!  My triglycerides went from 157 to 45.  My blood pressure dropped from 150/80 to 106/80.  For the first time since high school, my BMI and weight are in the healthy, normal range and not considered overweight or obese.  My doctor was quite surprised because my numbers have been similar for years.  She asked what I had been doing.  I told her lots of exercise and an overhaul in the kitchen.  She commented that most people know 80% of their weight issues start in the kitchen, but that most people don't want to hear it.  I was one of those people.  I've done the working out portion for years now, but every time my food would stay the same or only change for a week or two.  I always failed.  Now and then, I have foods that are horrible for me, but each day is a new day.  I don't feel guilty about it.  I just control it.  I've given up emotional eating and eating out of boredom.  I'm more conscience of it now. 

It's not been an easy road and I'm sure it will be a constant battle most of my life (it has been most of my life anyway).  I did this for my family...for my kids...for me.  For the first time in my life, I am comfortable in my own skin.  I feel good about who I am.  I'm not embarrassed to be in public with my kids.  I didn't want my children to think that their mom was fat.  I'm hoping my children will gain a better relationship with food and have the knowledge to make healthier choices and know that exercise is an important part of life. 

I'm actually okay with pictures for the first time.  I think it is because it is the only place I can actually see the difference.  I still don't "see" it in the mirror even though, I have entire new wardrobe with clothes that are sizes I never dreamed of wearing ever.  You may not be able to tell much from the pictures.  I had a habit of cropping out the bad parts and would only do from the waist or chest up.  

Brayden's birthday last August

Jason's birthday in October

Top pic is Ian's birthday last year and the bottom is Ian's birthday this year.

This year...girls weekend in May

Ian's birthday this year

Father's Day this year

Miss Independent

Sometimes I'm keenly aware of every milestone Hailey has mastered.  Sitting, kneeling, crawling, walking, signing, her first word, etc.  Some milestones hit me like a ton of bricks when I least expect it.  I took the kids swimming last week at a waterpark.  We have been there maybe a half dozen times over the last year and half.  Hailey loves the water and has no fear.  We coerced her onto some toddler slides last year.  She was uncertain at first, but loved them.  The issue was that it was always a two person job.  One person to take her up the stairs and sit her on the slide and then another to catch her at the bottom.  The water in the pool was up to her chest and she was always so unsteady walking in the water.  The boys are always less than thrilled to use some of their precious waterpark time by carting their little sister up to the top of the slide repeatedly...Hailey isn't happy with just two slides.  She wants to do it forever!  I asked her oldest brother for help, I wanted to see if Hailey could master it herself.  She was hesitant at first because she is used to one of the boys always following her and the boys have a hard time not helping her.  I had to keep telling Brayden to let her be, but it was bothering him.  I asked if he wanted to keep doing this for an hour and he quickly backed off!!!  After about 3 times, that was it.

For an hour, I watched Hailey climb 3 steps out of the pool, walk 30 feet to another set of 6 steps, walk another 15 steps, and climb into the slide.  Every time she sat on the slide, her face beamed with pride and she waved as she yelled "Hi mom".  I'm positive the smile on my face was equally as big.  No one could look at me and see how proud I was of her.  Her smile didn't fade as she slide down and walked through the water to do it again.  Hailey repeated the process for a full hour.  She walked with confidence like she owned the place.  My husband came by and looked at me a little puzzled.  He didn't know I was letting her do it by herself.  He asked if she needed help and she shot him a dirty look and answered with a firm "No, I do it".  That is exactly what she did. 

I never questioned milestones with the boys.  They just happened and generally with no assistance from me.  I wasn't so sure with Hailey.  I assumed she would do most, but you never knew when.  Last summer as she rode the exact slide, I was positive she would need assistance for the next couple of years.  I'm just as guilty as the boys when it comes to helping her a little too much.  I was so incredibly proud of Hailey that day...her independence, her listening and her confidence.  I was reminded that day to not underestimate my child.  Given the chance, the girl can do almost anything.

These pics have nothing to do with my story, but they do make my heart happy.  She's getting so big and turning into a little girl before our eyes (maybe one with a lot of attitude...but that's ok).

School's Out

It's been so long since I've written I figure I have no more readers!  Life has been busy and now I'm beginning to see why there are so many bloggers of little ones with Ds but they keep dropping off as the children get older.  Life seems to get in the way.  I thought I would spend my free time while Hailey was in school blogging, but it was right around that time that I decided to take charge of my own life and health, but that's a different topic for a different post. 

Hailey continued to do well through the remainder of the school year.  We had zero behavior (hope I didn't jinx myself for next year!) issues with her.  She never tried to run away (like she does at home) and she was very cooperative with activities at school.  She loves the playground and always came home chatting away about "Danny" and "Josh" from her class.  She does well with centers, dancing, singing, listening to stories, and role play.  I received good reports from all three of her therapists.  She has shown progress in all areas of her IEP.  I think she's mastered a few of the speech ones, but since she speaks so softly at school (and only when she wants to), it's hard for her speech therapist to actually hear it.  Hailey walks into school with such attitude and confidence. 

Almost as if she has been doing it her entire life.  Some days she runs to me after school and other days she would rather stay!  I'm excited for next year.  She will have the same team (teacher and therapists).  She will be going in the morning instead of afternoon and her class is a little smaller than last year. 

I almost think Hailey will prefer school starting.  She doesn't see the boys much more during the summer than when they are in school.  They are always at camp, holed up in their room or outside with friends.  School was better than I expected for Hailey.  She gained independence and her speech increased.  She was happy there and the staff seemed to be as happy that she was there!

If 3 months went that well, I can't wait to see what 9 months will bring in the fall!!!

She refused to pose for her last day of school picture without papaw.

Am I Embarassed by Hailey?

A couple of weeks ago right before I headed in the car to pick up Hailey from preschool, I caught this blog post from Ellen Stumbo.  It struck me hard.  It hurt hard...all the way to my soul.  I cried....all the way to her preschool.  I couldn't stop.  I guess it has been a long time since I even thought about what others think of Hailey while we are out.  Yes, we still get pity looks every now and then, but for the most part, she gets smiles and positive interactions.  I can't believe people believe that I would be embarrassed by my daughter.

Of all the words that come to mind, embarrassment is not one of them.  Love, admiration, pride, joy...those are the words that come to mind when I think of Hailey.  I love her just as much as we do the boys.  I admire her determination, her unconditional love, her joy.

The pride I feel for her is overwhelming sometimes.  She fought so hard to breathe and eat with her heart defect.  She rocked her open heart surgery.

With low muscle tone, every gross motor milestone she achieves takes much more work and effort than it does for a typical child, but yet...she NEVER gives up.  Low muscle tone also plays a role in speaking.  Slowly but surely she is forming clearer words every day.  The girl never quits.

Oh, the joy.  Her smile lights a room and her laughter is contagious.  She brings so much joy to everyone around her.   

So, no...embarrassment has no place in our life..not in our world.  So, when you see me out and about...don't wonder.  I am not embarrassed by my child.  You might want to smile and walk away quickly because I am probably going to talk your ear off about how fantastic she is.

How could anyone possibly be embarrassed by this beautiful little girl?