Comforts & Connections...Summer Blog Hop

I will never know what it feels like for Hailey having a disability.  I sometimes wonder what she will verbalize about it when the time comes.  It's weird me talking about Hailey's disability when I don't know that opinion.  I can only write from my point of view.  An outsider to disability really.  This week's prompt is "comforts and connections."  Just as with the challenges of her disability were a surprise and sometimes are outside of my comfort zone.  The positives have been just as surprising and outside of my comfort zone.

I never dreamed how exciting small milestones could be before we had Hailey.  How much we cheer and chant when Hailey learned to sit up or crawl!  You would have thought she won a gold medal in the Olympics the way we carry on.  I remember crying and cheering in the hospital when Hailey drank a 3 oz bottle after open heart surgery.  To most parents of a 4 1/2 month old, that isn't anything out of the ordinary.  Hailey had never finished a 3 oz bottle and when she came close, it would take over an hour.  To see her finish on in less than 10 minutes is overwhelming.  I had NEVER seen it.  This abundance of excitement "might" be why the girl is such an attention seeker, but it is quite deserving.  The girl works hard.  She's not struggling or suffering, it just takes more effort for her to accomplish things that we take for granted with our typical children.  Due to that extra work that she puts forth, we celebrate smaller milestones and we celebrate often.  We break out into spontaneous dance parties because Hailey shouts, "Dance daddy" or "Dance mommy".  We do it like it's second nature.  We are proud of her perseverance and proud of all of her accomplishments no matter how big or how small they are.

We occasionally encounter people who look at Hailey as if she is "damaged goods" or not worthy of their time because she is "less" than typical.  I can honestly say though that for every 1 person I find like that, I encounter 10 that feel the opposite.  They will seek Hailey out.  They will go out of their way to make her smile, say hi to her, or shake her hand in church.  She has a personality that seems to draw people to her.  There are days that I feel bad for my boys, but they seem to take it in stride (sometimes with an eye roll). 

The boys like the extra activities they get to do because of their sister.  Baseball games, play dates, picnics, ice cream socials, etc...all because their sister has Down syndrome.  They seem to make a new friend no matter where we go.  Sometimes I'll see them play with siblings and other times, I'll see them playing with an older child with Ds.  They are going to be great role models one day.

One of my biggest fears when Hailey was born was that our family would be isolated.  That we would be all alone.  I was afraid we would have no one to turn to or relate to.  I was afraid we would become hermits and not out in the world.  I actually have laughed out loud at this fear since Hailey has been born.  First off, if you have ever met my family...quiet, reserved and shy are not three words that could be used to describe most of us.  Secondly, I have never had more support in my entire life.  The Down syndrome community is absolutely amazing!  Shortly after Hailey was born, I started receiving emails.  All of them were from friends and acquaintances of mine that knew someone who had a family member with Down syndrome.  All of them came with a contact name, phone number and an email address.  I couldn't do that.  I couldn't just start talking to a total stranger about the biggest, most shocking thing that had ever happened to me.  Each email also included the same message, "contact them when I was ready".  Seriously...I would never be ready.  I have to laugh at that one, too.  Little by little, I have contacted many of those individuals.  They have helped me through some bumps in the road about acceptance, feeding, behavior, etc.  They didn't know me from Adam and were willing to help a complete stranger based on one common factor...we both had children with Down syndrome.  I didn't understand that bond at first.  I do now.  I have now been on the other end.  I have had family and friends contact me saying, "I know such and such.  They just had a baby with Down syndrome.  Can I give them your name and email?  Can they friend you on Facebook?  I think it would be good for them to see Hailey and her pictures."  So then, I become that person that is reaching out to a stranger trying to help them through some of those initial unfamiliar waters.  I get to pay it forward.  I get to help them like someone helped me.  I get to see their little bundles achieve the same milestones Hailey did.  I get to celebrate with them.  It is so amazing. 

Not only have I met amazing people online, but I have also met amazing people in person.  We are very fortunate to live in a large area with a large Down syndrome association.  We have a very active community.  I'm lucky enough to attend a Mom's Night Out dinner once a month.  It is a group of women that I may never met had I not had Hailey.  I honestly don't know what I would do without them sometimes!  I look forward to the dinner every month and am extremely disappointed when I have to miss it.  We don't even talk about Ds all the time, but they are a group of women that I can be 100% open and honest with.  They understand it all.  There are no explanations necessary.  They are always there.  If I need to vent with a one sentence text or I need a full blown conversation, they are there.  We are tied together by what many would think is just a thread, but that bond is more than that.  I thought it was just a local thing until I attended the National Down Syndrome Convention in Indianapolis this month.  Wow.  It left me speechless.  It's definitely a common bond no matter where you are.  I need to blog about that later.

We have been very fortunate with our team of therapists as well.  Even though these are people that are paid through their career to help my child, they have all gone above and beyond.  They truly love their jobs and many times, they come to love your child as well.  Most of ours have even made themselves available to us for questions and concerns outside of our appointments. 

I also take comfort in knowing that Hailey was no mistake.  Hailey was created just as God wished.  Why Hailey and not someone else?  I'm not sure, but I do not doubt for one minute that she was intended to be who she is...even with all her stubborn opinions and personality!

Who would have ever dreamed that my fear of being alone would be so far from the truth?  I never dreamed our life could be so full. 

I never could have imagined the world that this little girl would open up!

Challenges...Summer blog hop

I'm on a roll now! I think this will catch me up on the summer blog hop that my friend, Meriah coordinated. Today's topic is Challenges. I think this subject is more difficult for me than my letter to my younger self. I feel that the challenges of raising a child with Down syndrome goes in waves. It can be extremely difficult at times and just when we feel like you cannot take it any longer, the waves crests and glides you to shore and life balances out again.

I think a large factor in this is the birth order of your child with Ds. Hailey is number 3. By the time she was born, I had a 7 year old and a 3 1/2 year old. Yes, they both reached milestones at different ages, but they were still similar and close to the same. Actually with some things, my second did mastered them earlier trying to keep up with his big brother. Then along comes Hailey who is delayed. I had data and memories to compare her development to. Sometimes that can be overwhelming. It was hard watching her struggle with simple tasks that her brothers seemed to master overnight or even in their sleep. I didn't know how to break down the process of sitting up or standing for her. Gross motor planning comes easy to most typical children. Unfortunately, that is not always the case with a child with Down syndrome. We needed to break down each milestone into a dozen or so components. I am an impatient person...this makes Ds a challenge on many days! It seemed every time I was ready to give up "she's not going to every crawl, walk, etc.",she would make an advancement or meet her milestone. Trust me, if I could will this child to master her milestones, she would have been running at a year. Gross motor delays are a huge challenge to accept early on. When you are out and about, you see parents holding hands with their one year old while walking at the park. You look at your child sheepishly knowing she has just mastered crawling. No, in the grand scheme of life, it is not a big deal, but in that moment, it is. Sometimes I find myself dealing with jealousy over typical children because simple tasks come so easy to them when Hailey had to struggle with each and every one of them.

 As much as a challenge that gross motor was, it doesn't compare to the intellectual side of things. I always "knew" that Hailey would crawl, walk, run, etc. Intellectually there are no guarantees. I grew up getting straight A's and graduating valedictorian of my high school class. I attended college on a full ride scholarship because of those grades. In short, I grew up...if you get good grades, you will go to college and you will be successful. With that mentality, you look at a child with developmental delays...how does that translate? It's hard letting that go. When I say that to some people, I get a small sympathetic smile followed with a "it will be ok". Really, is it your child? No. You push your child to get good grades. I push my boys to get good grades. It's hard to change that mentality to pushing for progress and not perfect grades. Yes, I'm getting there, but it's hard. It's difficult to hear children Hailey's age carry on full conversations with their parents, recite their alphabets, count, etc. Hailey is not there yet. She will get there some day, but we don't know when. We don't know what her future holds. Will she attend a program at a college? What will her dreams of her future be?

 I've encountered other challenges that I never gave much thought about before. When we received Hailey's diagnosis, I received a crash course in terminology that I never heard or even knew existed. Medical terms for her heart and Down syndrome, organizations I didn't know existed, tests that needed run on Hailey that I didn't know anything about, educational jargon that made my head spin. Even now, I feel like there is so much I don't know that I need to know. Things that I am afraid I'm going to miss with her that will cause her to be less successful in the future.

The biggest challenge I am having being a parent to Hailey is the fear that I am not enough. That I'm not a good enough parent. That I am not a good enough teacher. That I haven't done enough research. That I don't work with her enough. That I am going to short change her in some way. Society will judge her based on her outward appearance, by her speech, by her mannerisms, her reading and math skills.  What if I don't do enough now. Will someone think she is less of a person later?  What if I don't do enough now...what happens when I am no longer around?

No matter what challenges arise with my little girl and her disability, I wouldn't trade her for anything in the world.  All the challenges we have overcome thus far with Hailey pale in comparison to what we get in return.

Take a minute to read some of the other challenges below...

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.