Friday, November 21, 2014

One Year.

Where has the time gone? It feels like only a few weeks ago we were staring at our precious little girl lying in the NICU bed. Praising God for the miracle He gave us, yet silently wondering what life would be like now that she's here. What does life with a child with Down syndrome REALLY mean? 

I can't speak for the future, but I can tell you how I feel after one year...

Not once, NOT ONCE, have I looked at Hannah and thought to myself, "Maybe we should have listened to the doctors and not had her." 

Not once, NOT ONCE, have I thought, "It was so unfair to bring her into this world."

However, what I HAVE done is thank God every single day for her. I thank Him relentlessly for her. 

Hannah has brought nothing, and I mean NOTHING but JOY to our lives. She has 100% without a doubt improved our lives. She has changed me in ways I only wish I were talented enough to put into words. 

At 12 months old Hannah is...
Beautiful, curious, bright, calm, enchanting, determined, brave, engaged, smart, loving, petite, funny, gentle, tenacious, adorable...

She is everything I feared she wouldn't be. She is perfect. 

Hannah has given me an alternate lens for viewing life and the world around us. Because of Hannah, I have a different perspective on life and the future. She has strengthened my marriage, my relationships with my family, and most importantly brought me closer to God. 

I've learned not to lower, but to reevaluate my expectations for my girls. Doing so has changed my entire perspective on life and on the future. 

To all of you that have taken this journey with us, thank you. Thank you for rallying around my girl and becoming our village. 

Thank you for cheering Hannah on as she's grown though this first year of life. 

I've decided this will be my last post in Praying for a Miracle. 

I created this blog as a way to share Hannah's story and as a personal diary of what started out as a very painful time in my life.  Most of my posts were typed with trembling hands and eyes filled with tears.

 I think Hannah's first birthday is a fitting time to wrap up this chapter of her life and mine. 

My plan is to use the posts in this blog to create a book for Hannah. I look forward to the day I'll be able to read each post to her, tell her the story of God's touch in her little body, then proudly look her in the eyes and say, 

"You, my darling girl, in your short little life have touched more lives than you will ever know. I am so proud to say that I am yours and YOU are mine. Thank you for being our guide on this beautiful journey."

Happy first birthday Hannah Belle. 






























Thursday, May 22, 2014

One year ago...

Tomorrow is the one year anniversary of the day I received what I thought was the most devastating news of my life. Truth be told, I hate thinking about that day. It was the hardest day of my life. It was the day any expecting mom never thinks will happen to her.  It was the day I got the call saying, "Sorry, your baby has Down syndrome."

I wish I could go back to that day and have a conversation with myself.

 I wish I could hug that scared momma after she hung up the phone and began to fall apart. I wish I could hold her and tell her it would all be ok. I wish I could tell her that she's about to find out what she's made of and that she is so much stronger than she thinks. I wish I could tell her that she's about to receive love and support from more people than she could ever imagine. I would tell her that she's going to be so proud of her husband and how he handles this, so forever grateful to her parents for their love and support, so touched by her friends and their kindness. I would tell her not to listen to a word the doctors say. I wish I could tell her she was about to witness something miraculous.

But mostly, I wish I could have just placed Hannah Belle into my own arms right then and there. That scared momma would have snapped right out of her devastation and fallen in love 6 months sooner.

If only I could put Hannah Belle into words for those of you who will never meet her. She is something that you just have to experience. She is such a peaceful and patient child. Her smiles are so genuine. Her laughs and giggles will put tears in your eyes. It is an honor to be her mother. I am completely in awe of her.

I remember worrying that I could never love a second child the way I love Paisley. I thought Paisley had taken over and filled every crevice of my heart, but I was wrong. There was an equal amount of space there waiting for Hannah.

What I've learned in the past year is that my belief in God means I have to trust Him and have faith in His plan even when I'm hurting, even when it makes NO sense to me, and even when he tells me to trust Him with my children. I'd love to say that I am the perfect Christian and that I never struggle with my faith or find it hard to trust God. That would be a lie. It terrifies me to hand my children to God and say I want YOUR will for their lives. I've come a long way in a year, but I have a lot of spiritual growing to do.

When people inquire about Hannah, sometimes they say, "Maybe she'll be high functioning."
Maybe.
I hope so.
But maybe she won't. 
Maybe she'll be a poster child for Down syndrome; the one that changes the literature. 
Maybe.
But maybe she won't. 
Maybe she'll go to college. 
Maybe.
I hope so. 
But maybe she won't.
 Maybe she'll be just as happy to stay at home forever.

The truth is, Hannah comes out ahead either way because she is God's child. I'm her mother, but she belongs to Him.

Do I have fears about Hannah's future? Of course I do, I'm human. I fear for ALL my children. But I know, I KNOW, God has a perfect plan for Paisley, for Jake, and for Hannah.

What I've learned from Jake and Hannah is when you have a child with special needs the lows are low... But the highs are SO much higher.

I was watching the video I took of the first time Hannah rolled over. I can see how my hands were shaking and hear the tears in my voice as I excitedly taped her and encouraged her to roll. It is a day I'll never forget. Those are the things you take for granted when you have a "typical" child. You just know they're going to reach those milestones. With Hannah, I don't know. So when she does, it is pure joy.

Are there heartaches? Sure. Who wants to take their precious infant to physical therapy? Who wants to worry about which occupational therapist to choose, which speech pathologist to choose, which audiologist and ophthalmologist is best? Who wants to think about when to start teaching sign language? Who wants to worry constantly about whether or not they are doing enough for their child's development? Who wants to think that the world will always judge her child by her physical appearance before they ever get to know her? Who wants to be constantly reminded of all the things her child won't do?

However, the heartaches of every day life with Down syndrome pale in comparison to the heartache it would have been to never have known my sweet Hannah Belle. It terrifies me to think of how close we came to losing her.

Like any other mother, I want the best for my girls. However, Hannah has changed my definition of what, "the best" means. 

More than beauty or success, more than wealth, more than popularity, I want my girls to have an authentic relationship with Jesus. 

Secondly, I want them to be happy. 

The rest is icing on the cake. 

The past year was hard. So hard. 
But so worth every single tear, sleepless night, and worry.

This is the happiest I have ever been in my life. I find myself constantly stopping myself to just pray, "Thank you for my life, Lord."

We are not rich, we work way too many hours, our house is a mess, we don't have nearly the time or money to travel the way we used to or buy the things we used to buy. I can still say without hesitation, that I have never been happier.

I still worry daily. My life is not perfect. What I've learned in a year's time is to not let the worries of tomorrow rob me of today's joy. Hannah Belle is a constant reminder to enjoy each day and be thankful for simply being able to breathe.

It has been an incredible year. I'm so happy I started this blog.  As of today, this blog has had 7,500 views.  Unbelievable. Thank you for allowing me to share Hannah Belle's story. 

Miss Hannah turned 6 months old this week. She sees a physical therapist twice a month and has some big appointments coming up this summer. She's growing stronger every day. She has brought nothing but pure joy to our lives. 

Friday, March 21, 2014

World Down Syndrome Day

If you had asked me exactly one year ago, I wouldn't have had a clue about the significance of 3-21 on the calendar. This day last year I had no idea that a little miracle was forming inside me. And while the amazing process of a life being formed was happening, something no one ever expects happened to the tiny life inside me. She received an extra copy of her 21st chromosome. 

I've researched more than I could have ever imagined about the significance of that one extra chromosome. To some, it's unthinkable. Punishable by death. My heart breaks for those people that will never meet their child because they just couldn't bare the thought of having a child like mine. 
I've wondered for several months about what we would do today. Would we have a party? Release balloons? Do something special and significant? 

Here's what we did... We had a completely normal day that any other family with a "typical" 4 month old would have.
 We shopped, we lunched, we played, we stopped for strangers to ooh and ahhh over our beautiful baby girl. We had tummy time and laughed so hard at the adorable and giggly girl that Hannah Belle has become. Not once did I look at her and think about Down syndrome. 

To me, this was the best way to spend this day. Hannah is a lot of things to me...miraculous, beautiful, life changing. 

But one very important thing I want the world to know about Hannah Belle is that she's also just an ordinary baby. 

Happy World Down Syndrome Day Hannah Belle. 




Friday, February 14, 2014

Two months old...

Today was Hannah's first Valentine's Day. To celebrate, we partnered with our sweet friends, the Balkaran family to make Valentines for the guests staying at the Ronald McDonald House. This morning, we took Hannah and Paisley to deliver Valentines at each guest's door. It was so special to return to the place that took such good care of Mike and I just a few weeks ago. Then, we spent the rest of  the afternoon surprising Daddy and Paw-Paw with Valentines at work.

It was a beautiful day and I couldn't help but think how this time last year I didn't even know I would be pregnant with Hannah. Life is full of surprises!

I can't believe how much I've experienced in just one short year. Last year was full of tears, fears, smiles, prayers, rejoicing, and miracles. Looking back I can honestly say it was the hardest and most amazing year of my life. I wouldn't trade a single second of it for what I have now. Hannah is so precious to me and my family. We fall more in love with her everyday. Her smiles and coos are just good for the soul.

When you receive a diagnosis like Down syndrome, you have no idea what to expect. I spent so many nights lying in bed (not sleeping) wondering what Hannah would look like, what her health would be like, how would we manage. I read EVERY book about Down syndrome that I could get my hands on. If only I had known. Hannah is a perfect baby. She's so calm and sweet. She's so healthy. She's so beautiful. She's everything I never knew I wanted. And I sleep just fine at night now.


Who knows what tomorrow will bring for our family. Most of you know, Jake's health is still very much a concern. Our prayers are that the doctors will lead us in the right direction. He's had a rough year too. He deals with things on a daily basis that most people won't experience in a lifetime. Please continue to pray for Jake.


Thank you for your constant support and prayers for our family. Life is good. Life is so good. We found out today that there will be another little girl added to our family this summer. My brother and his beautiful wife are expecting a sweet girl. I am so excited to think these precious girls will have each other to grow up with.


God has carried us through the storm and continues to bless us and provide in ways we couldn't have imagined. We are so grateful... so, so, grateful for our family and friends.
Happy Valentine's Day!








Friday, December 27, 2013

One month old

On Hannah's last day in the NICU she was given a hearing test. She failed the test in her left ear. For the last month I've prepared myself for Hannah to be deaf in one ear. I've tried to not feel defeated by the news because I know that compared to all Hannah's struggles, loss of hearing wouldn't be the worst news. However, I have found myself constantly thinking about it over the last few weeks and continuously making noises in her ear and "testing" her myself. Once again my fears were in vain.

Hannah traveled back to the hospital today to meet with an audiologist at Arnold Palmer Hospital. The appointment was pretty easy. I had to hold her while they hooked a few wires to her head and placed devices in her ear. Hannah slept through the entire process. At the end of the test the doctor looked at me and said, "I have good news and I have even better news." As tears fell down my face I listened to the doctor explain that not only does Hannah hear in BOTH ears, she has better than average hearing in both ears. Praise God!

Once again Hannah continues to amaze me. It seems as though she easily jumps every hurdle placed in front of her. All the while she continues to be the perfect baby. She hardly ever cries or fusses about anything. My mom said it best when she said, "It is like God just clipped her wings and sent her to us." She is our perfect angel.


Saturday, December 7, 2013

Two weeks old

We continue to fall more in love with Hannah everyday. She is such a good baby. Our only struggle is keeping her awake long enough to eat! Hannah's pediatrician is thrilled with her progress. I find myself just staring at her, still unable to believe she is here. I absolutely LOVE being home with Hannah and Paisley everyday and am already dreading my return to work in March. Not because I hate my job as a teacher, but because my dream job is to be a stay at home momma.