The Hailey Herald: thoughts from mom

Showing posts with label thoughts from mom. Show all posts

Friday, July 12, 2013

Happy 2nd Heart Day!

Today, I sit and listen to Hailey trying to worm her way between her two brothers as they play a video game. She chats away to both of them (who probably are unaware she is sitting between them unless she smacks them in the head with a book or extra gaming controller). She is happy just being with them, being beside them. In a few minutes, she will toddle back into the family room to show me what goodies she is hoarding in her bucket or shopping cart. I never dreamed of this day, I couldn't.

Two years ago, we were waiting, pacing and crying while we waited for word from the operating room about Hailey's open heart surgery. The repair that would enhance her life....the one that would prolong her life. Hailey was showing early signs of heart failure. It was surgery or lose her. Even though the decision was a no brainer, we were frightened because as common as her surgery is, if something went wrong, we would lose her anyway. I don't think I'll ever forget the way I felt as we pulled into Children's hospital at 6 a.m. The halls so quiet as if everything was in a whisper state. It was almost as if I could hear the clock ticking away the minutes in my ear...the countdown. Hailey was in such a fabulous mood that morning. I won't forget the feeling of standing at the entrance to her operating room. The sights, the smells, my fear. Handing her to the anesthesiologist, so terrified I wouldn't see her again. The nurse putting his arm around me saying, "We'll care for her as if she is our own." It all still brings tears to my eyes and a huge sigh in my chest. Those memories will never go away and I'm not sure the feeling ever will either.

It is often hard to believe looking at Hailey that she was ever sick or ever fighting for the energy to eat and breathe at the same time. Hard to believe that we were worrying if we would lose her when she is so vibrant.

But I sometimes wonder, is it because of all of those events that life sometimes sweeter? Milestones bigger? Sunrises more promising? Sunsets more spectacular? Giggles more contagious? We will never know. It just part of our story...her story. I do know that I never let myself dream of today. Listening to my three "hanging" out. Watching Hailey mother over her babies or dart through the kitchen with her shopping cart like she is missing a huge sale somewhere. I never let myself dream of the sassy, funny, so full of life two year old that we have today.

We don't worry about her heart anymore. It is strong and it is healed. Honestly, it's not a thought on the radar anymore. Most of the time, we are too busy chasing her! I will never forget this day and I will always thank God for medical advances, our very talented surgeon and dedicated medical team.

Happy 2nd Heart-versary, Hailey!!!!

The night before OHS

Two days after

One year later

Today...two years later

Sunday, June 23, 2013

She's Not My Cross

This week in church, our priest was on vacation so we had a guest priest fill in. Conducting mass this week was a Monsignor from Ghana. His english was perfect, but you definitely had to focus due to his accent. He started out talking about people in his community asking why God didn't grant them what they asked for in their prayers. He explained to them that when you make the decision to be a follower of Jesus you agree to share the burden of carrying the cross.

Everyone has their own cross to carry, everyone's is different. One person's could be poor health, someone else's a disability, and another person's financial issues, etc. This got me thinking. I hope that people don't look at my daughter as my cross to carry. It breaks my heart to think that some would view her as a burden. We all have our ups and downs. Some of our loads are heavier than others. We all deal with our issues differently. Some cave to the pressures and some rise up above them and come out on the other side stronger. Some help others deal with their issues.

I've had difficult things happen to me in my life, my mom died at the young age of 25 shortly after I turned 5, I had a boyfriend pass away in high school, another friend died shortly after him, grandparents, aunts and uncles have passed away, a miscarriage, Hailey's unexpected Down syndrome diagnosis and her heart defect. Each event difficult and challenging in their own way and each one changed me. I'm not sure which one, if any of them, was my cross to carry. Maybe it was the combination of them all. I do know for certain though...Hailey is not my cross. I hope others see that, too. She is funny, sassy, frustrating, animated, active, mischievous, rotten, spoiled, beautiful, stubborn, and loving.

A burden...she is not.

I happened to catch her dancing to the TV.

Love this girl!

Friday, June 21, 2013

Summer Days

The boys are living it up this summer. They are trying to squeeze every ounce out of their summer vacation. They have been outside playing with friends every day. They go outside after lunch and play until we make them come in to eat dinner (they sometimes go back outside after dinner). They make an occasional trip inside for snacks and drinks for them and their friends. I laugh at the "Play 60" commercials. Our children in the neighborhood seem to be average at least 5 times the 60 recommended minutes of activity a day. I love that they are playing outside and that they have friends to play with. I have to admit though, I kind of miss them. By the time they come in for the day, they eat, shower and fall asleep...more times than not on the couch :-) I knew the boys were getting ready to head to visit their grandparents, aunts, uncles and cousins for a week, so I decided the only way to spend time with them was to take them out of the neighborhood for a few hours. I picked them up from bible school and took them for lunch. We spent the afternoon swimming and playing. They were excited for the surprise and had a great time. Yes, as soon as we got home, there was a knock at the door and they were gone again! So happy for our neighborhood :-)

Little sister was happy to have her brothers to play with, too...she really misses them! Not to mention, she LOVES the water and the waves!

Watching her walk and play in the water is so surreal. Even a year ago, it was so hard to imagine her walking and playing like other children her age. Waiting for milestones sometimes is difficult. We get impatient, frustrated...it is so out of our control. We have to wait and work. Can I be honest though? It makes these milestones so much sweeter. I still sit back and watch her walk, watch her play. Still in awe. She has worked hard to get here, now I get to watch her enjoy it!

She even got to show off a little for Dad.

She prefers the waves on and likes to walk into them.

She loved playing with her big brothers.

I caught the boys dancing in the pool...they still don't know I saw them :-)

Thursday, June 13, 2013

Comfort Zone

I've always been the type of person to stick within my comfort zone. I love to bury myself into a good book. I am not a person that will willingly go social functions alone. I'm chatty and social once I get to know people, but I'm uncomfortable when I don't know people. I don't like to be the center of attention. I prefer to be a wallflower. Well, I've learned over the last two and half years, that I don't always get that option anymore. There have been so many instances and situations since Hailey was born that I cannot count. I have had no choice but to move outside of my comfort zone. I've talked to large groups of people where I didn't know a single person. I've gone to dinner with women that I didn't know, knowing the only thing we have in common is a child with Ds. Would that be enough in common? What would we talk about? Meeting new parents of children with Ds, trying to help ease their minds about their journey. Standing in a roomful of medical professionals, not fully understanding all of their medical terminology, feeling very small, but knowing that I had to catch every word they were saying because it was about my daughter's health. Holding my daughter close as a nurse tries for the 4th or 5th time to draw blood from her tiny veins and she screams in pain. Sitting beside my daughter's bed for 48 hours as she laid in a hospital bed, with drainage tubes, an incision running the length of her tiny chest, watching as the respiratory takes each breath for her as she recovers from OHS. Sitting through each assessment as professionals tell you each area that your child is delayed in. Over the last 30 months, I have been out of my comfort zone. I've adjusted my comfort zone.

Day in and day out, we push Hailey out of her comfort zone. We push her physically and mentally. Somewhere along the way, I've noticed that we are all moving out of our comfort zone a little bit. Pushing ourselves to do things we wouldn't normally do. This week, Brayden (who is deathly afraid of heights) was somehow convinced to ride the biggest roller coaster at Kings Island, Diamondback. Ian and I joked that Brayden would back out at the last minute. He surprised us and stuck with his decision. I'm very proud of him! He said he loved it, but wasn't jumping at a chance to ride it a second time :-)

Dad and Brayden making their way to the top of the first hill

Brayden seems quite calm getting off the ride with Dad!

Brayden and Dad definitely not trying to look as cool as the two guys in front of them.

He was very proud of himself!

We were even able to convince Ian that he had to try a ride that scared him. I'm very proud of him. He was scared to ride a bigger coaster, but he did it and loved it.

Ian was very nervous behind that smile.

Hailey was joined by two sisters. They taught her to use the steering wheel even when it was moving.

About 9 weeks ago, I decided I was going to start running. My goal was to run a 5K. I've never been a runner. I'll gladly take any fitness class and give it 110%, but don't ask me to run. Not me, not ever. So 4 days a week for 9 weeks, I've been walking/running to build myself up to running. I've been getting up before the household for a little me time. Just me, the sunrise, and my music.

Some mornings my mood and the skies were cloudy

Some mornings, it was hard not to smile at the beautiful sky

I had no race in mind. I figured I would find one in the fall. Well ironically, the end of my couch to 5K program, a race was happening in my neighborhood during a festival. I decided it was now or never. I registered and I ran. It was out of my comfort zone. It scared the living daylights out of me. I didn't run the entire race. The course was hilly (I was not aware of that or I may not have signed up for it!) and I'd been running on fairly flat land. I finished. I'm proud I set a goal, stuck to it and saw it through. Maybe I'll actually stick with this :-)

The first of many race numbers?

Me nervously waiting to start the race

I will shamefully admit that I sprinted the last two-tenths of the race...there was an old man that had walked most of the race close to me...I couldn't let him beat me walking :-)

Somehow having Hailey has pushed us all out of our comfort zone. It's not always easy....it's not always by chose. Some have gone fabulously, others not so well. Who would have thought, a little dimpled two year old could make all of us try new things. Can't wait to see what we all try next!

Monday, May 6, 2013

What Do You See?

After Hailey was born and we were told she has Down syndrome, I suddenly saw all of the physical markers. I saw the almond shaped eyes, the teeny nose with small nasal bone, and felt the low muscle tone. For a long time, I didn't truly see Hailey as a person, I saw Down syndrome. I wondered if there would ever be a time that I would "see" Hailey. Would I always see Down syndrome? Why couldn't I see my daughter? She was mine...part me and part my husband. Down syndrome didn't define her, it was just part of her, but I couldn't get past the physical features that you could see. I was frustrated, sad, and felt incredibly guilty.

To all those parents who are having a difficult time dealing with their diagnoses...for the person I was...this is for you. Two years and two months later, I don't see Down syndrome (and I haven't for a long time). Down syndrome doesn't rule our life. Yes, I do write about Down syndrome, but they are thoughts that pop into my mind or things we run into in our daily life. We don't eat, breathe, sleep Ds. Who knows, if one of the kids had any other condition, I might blog about that, too. I'd blog about issues the boys have, but most people don't find sassiness, teacher struggles, children squabbles, or every day athletics as interesting. Yes, we belong to groups that originally centered around Ds, but these women and families are great people who are fun to be around. I look forward to getting together with them. Our daily life, only deals with Ds in the sense that it is a part of Hailey.

So I ask....do you see the same things I see?

A funny two-year old who loves and nurtures her babies...