It's hard to believe that one year ago today, I woke up early and put Sadie in some jeans and a pink shirt with green polka dots. Shawn had planned to go into work a bit late, and as a family we drove to the ultrasound clinic. We were so excited to find out if our baby was a boy or a girl. That day ended much differently than we could have ever imagined. The sex of our baby no longer mattered to us. All we wanted, was a baby that would live.
The most difficult task that day, was calling those we loved to tell them that our baby was missing 1/2 of her most important organ, her heart. We were quickly exhausted and found ourselves unable to continue. With that, the blog was born. A way to share the ups and downs with everyone, all at once.
We never imagined that total strangers would read about our unborn child and begin to pray for her. As family, friends and complete strangers began to follow the blog, we were humbled by the response. Throughout this year, we have never doubted that we are not alone.
One year after this life altering news, we find ourselves back in Calgary with our daughter (Hope was airlifted back to the Calgary Children's Hospital this morning). Hope has 2 heart surgeries behind her and we pray, a future ahead of her. So much has changed, but one thing remains. We believe that God is in control and is carrying us through this journey.
Recently my mom shared this journal entry with me. She wrote this 2 days after I made that first difficult phone call to my dad. I'm sure he never imagined the words that would come out of my mouth that day as he answered my call. "Dad, there's something wrong with the baby. It's missing half of it's heart and it doesn't look good. Please tell mom to call me." As she processed the devastating news, she wrote this...
"It’s been 48 hours since that heart breaking phone call that brought a quick end to just an ordinary day. I had already been dreading the day – seems so lame now to think I thought going to the dentist to get my teeth cleaned was daunting. So petty and frivolous now. As I drove into the driveway of the dentist, trying to shove an apple down my throat so I wouldn’t be hungry during my appointment, I scrambled to answer my ringing cell phone. Ian’s voice was direct and suscinct. “Call Amy right away on Shawn’s cell phone. There is a problem with the baby – it only has half a heart”. My first thoughts were, “that can’t be” – how can a baby be living at all if it only has half a heart? I first ran into the dentist office to tell them that I had a family emergency and couldn’t possibly stay for my appointment – I told them I would call to rebook through what was the beginning of a waterfall of tears. Before leaving the parking lot, I nervously dialed Shawn’s number and Amy immediately answered. She was frantic and a couple of times I had to ask her to calm down so I could understand her. She said again “the baby only has ½ a heart”. Her words felt like heavy weights crushing my chest. I could hardly believe what I was hearing. I was inwardly hoping she was simply overreacting, especially with my already preconceived notion that surely no one could even be alive with such a thing - even while in the womb!
As the day progressed, it became increasingly clear. Amy and Shawn’s baby did indeed only have ½ a heart. Only the right side (the weaker side) of her little heart was working. The formal diagnosis is called Hypoplastic Left Heart Syndrome. It is a very rare and complex terminal heart defect. Out of 10,000 babies being born, only 1-3 babies are born with this. I couldn’t get to the internet fast enough. Once I knew that Amy and Shawn were safely home and no doubt attempting to process this devastating news themselves, I tried to absorb all I could in order to get an idea of just what we were facing. The statistics are staggering and the stories a mixture of encouraging and heart wrenching. Basically, the only way to save these little ones’ lives is to risk them entirely. The tears were uncontrollable. Almost 48 hours has passed since then. I still can’t believe the numbness that has engulfed me. As I sit here writing this, I am struck by the inability that has overtaken me to do anything remotely productive. I seem to be only able to just sit. And pray. My thoughts constantly leap to the fact that the only hope that any of us has in this situation comes from God. I am so mindful of the fact that he has fearfully and wonderfully formed and made this little girl in Amy’s belly and He is still a God of miracles. The Red Sea was no great feat for Him. Why, he could shut the mouths of lions, cause the sun to stand still, turn water into wine, make a donkey speak and over and over gave sight to the blind, leaping legs to the lame, and even life to the dead. He is certainly capable of fixing the broken heart that he has already made. My first task at hand was to raise up an army of prayer warriors. Ian and I have always acknowledged the power of prayer and I knew that, if we were going to survive this nightmare and see this little girl have any chance at a normal life, God had to do the work. We needed people to pray. I emailed and Facebooked just about everyone I knew and told them of the situation at hand and asked for their prayer. I have never before coveted the prayers of God’s people for anything in my life like this. I am desperate for friends and family and complete strangers to join with us in praying for this little life. We don’t know what is ahead but we know who is leading the way. We choose to walk by faith and not by sight. We choose to simply trust.
“Oh God, our lives are in your hands. And the life of this little girl is laying at your feet. We know that you have intricately made her and that you know every detail of her underdeveloped heart. We don’t ask why because how we could ever question an all-powerful God on His methods or plans? We recognize your power, your sovereignty, your Holiness. And we simply put it all in your hands. I have so many fears, so many unknowns, so many worries. But I give them all to you. God have mercy on us. God, wrap your arms around Amy and Shawn and give them constant assurance of your presence. Let them know that you are there, walking every step of this torturous road with them. May they have a peace that is unexplainable. May they have a strength that is beyond imagination. May they have a hope that is unprecedented. God, work a complete miracle in this little girl. Give her the heart that she needs to live in this world and become a world changer for you. Give her a functioning left side of her heart and grow the arteries, aorta, inferior and superior vena cavas and all the correct valves etcetera that she may need to have a healthy and pumping heart. I pray that, if it is not your plan to heal her heart completely before she is even born, that the mechanics and anatomical prerequisites to be able to withstand any surgery that she may need will be there to give her the best fighting chance and outcome. God, work a miracle in everything you do. We love you and we look to you for our hope, strength, wisdom, and encouragement . Lead on oh King Eternal.".......
As you know, God did not choose to heal Hope's heart before she was born. That was obviously not His plan for her life. He did, however, graciously allow her to survive two open heart surgeries and numerous procedures and we thank and praise Him for that. He has continually been at work in ways that we probably may never even know and He has used Hope's journey to teach us more than we could have ever imagined.
A beautiful, yet difficult year comes to an end. We look forward to the future although it is full of unknowns. To the masses that have been so faithful to pray for us and carry our burdens as their own, we are forever thankful.
I am one of those "complete strangers" that came to this blog via my (also initially, "complete stranger") facebook friend, Melanna ~ in the short time that I have been a follower I have come to see the ways that God is working through your family to make us see that miracles are indeed possible! I trust that Hope will go from strength to strength and I can only believe that He has great things planned for your little fighter. Prayers follow you. Kind regards Patricia
ReplyDeleteAmy, we are with you and Shawn. One of our friends had a baby boy named Judah 3 days ago who has the exact same condition. They are believers too. God is so faithful, and it has really encouraged me to see that you love Him so much. It's been years since I saw you, and so many of my old friends aren't walking with the Lord today. I knew in my spirit when we were in high school and Alicia DeVries brought me to her youth group and I ran into you there that it wasn't the last I'd hear fron you and this is why. Every time I speak my daughters name I think of your little one. They share a powerful name and are meant to be Hope reformers in this generation. God bless you each day in your journey. I am also praying for Sadie, as I know siblings carry such love for one another. How is she coping with it all? Sometimes they seem just fine- the situation becomes the new "normal" that they know. Mammals know what to pray for. I am praying for her to be filled with complete security in God and a faith that never waivers. If there's more for her, please share it. We'd love to keep her lifted specifically too. Love you. God bless. -julie
ReplyDeleteI was also introduced to this blog from the ripple-effect of friends of friends of friends. Such a moving and honest account of a journey unimaginable for most of us, and you tell it so beautifully. Your Mom's writings so early in the journey speak volumes of the foundation of faith on which you all stand (and sometimes kneel or lie prone). I was struck by the times when her prayers for the unknown child included the the word 'hope', especially "we look to you for our hope". She might well have captitalized it! A beautiful name - Hope - and symbolic of the utter faith and confidence in our Great God that you exude. Blessings to you all, and continued progress for your precious child.
ReplyDeleteYour sister in Christ,
Shirley
I am a complete stranger as well, I saw your blog and story through a few friends on facebook. The first night I saw this blog I stayed in bed and read until well after midnight. Post after post, through tears..... until I got to the very beginning, and then I went into both of my baby's rooms and hugged them and counted my blessings. The truth and honesty in this blog is so potent. I am feeling with you, I am seeing God working through this, what a powerful, powerful story. Thank you so much for letting us into your life and still proclaiming God in all of it.
ReplyDeleteIt is encouraging, refreshing, cutting, heart wrenching, joyful and most of all honest. What a great time we live in to be able to send out a prayer request and have hundreds and hundreds of people lift up your daughter. what a beautiful little gift you have in both of your girls.
thank you from the bottom of my heart.
In Christ together,
Jessica
Sweet Amy, Strong Shawn, Sassy Sadie and Enduring Hope
ReplyDeleteYou are a family which lives in my heart and prayers every day. Of course I want all of our prayers answered and see Hope progress well with no more crises. And I know my prayers will dwindle as God makes each day easier for you. But I never never never want to forget you four. Amy, you and Shawn are the exact parents God needed to bring Hope to this point. Can you imagine the little ones born with her affliction or others when their Mommies and Daddies are not dependent on the Lord? I'm sure He still helps and heals, but how much harder it must be. Sadie, you are a sweet and selfless little girl. You have patiently and cooperatively accepted the care of other people while Mommy and Daddy needed to be where Hope was needing them most. God will have such rewards for you, because you have learned to love and show love when lots of other kids are just soaking up whatever good things come their way without any realization that they are blessed. You I'm sure will grow up to be as wonderful as your Momma and Daddy and your Nana and Poppa! Hope, you have drawn the world to the throne of God!!! He surely knew as you grew in your Mommy's belly that you would introduce hundreds of people to the joy of answered prayer. Thank you Hope for bringing me closer to Jesus. Thank you Koslowskis for sharing your story and for allowing your feelings, even the raw ones, to be read and analyzed by people who hadn't even earned that right. Thank you Kirks for letting me in to your family's toughest year. Thank you for the privilege of letting me call you friends. Thank you for the impact you, like your daughter and her husband, have had on my family.
Amy, please pray about writing a book. You practically have it written already. The world needs to hear this story.
Much much love and respect to you and yours.
Hugs
Kathy
Im also a sranger but have been praying for your family. Hope is the most precious little girl and everytime I see her picture my heart melts. Ive commented before and mentioned my daughter was also born with a heart defect and needed surgery at 3 weeks. She developed complications post op, including cardiac arrest, so I understand many of your emotions, fears and frustrations. Our daughters are only 2 months apart and I pray for Hope when I pray for my little girl. I remember the frustrations and anxieties that come with long hospital stays and Im praying for you and Shawn during this time. One verse I clung to during our time in the hospital.....psalm 34:4. "I sought the Lord and He answered me and delivered me from all my fears". Your family has been an encouragement to so many and I will continue to pray!
ReplyDeleteWhat an loving, kind, Godly, generous, caring, compassionate, selfless and serving mom you have - an amazing example - now you are passing on that gift to your daughters = amazing!
ReplyDeleteAs a mother and a grandmother, I wept as I read Hope's grandma's entry. I can identify with the concept of being totally non-functional after the initial news on this special child. I applaud the steadfast faith that has been a constant since that time. I know we all are thankful that Hope is back in Calgary. What a giant step forward for such a tiny child. God bless all.
ReplyDeleteYour mother's words about Hope and about her trust in God brought tears to my eyes and a lump to my throat. I can see at least one reason you are the strong and faithful Christian you are--she has set an example and been a source of strength and encouragement to her family. I wish your family all the best as you continue to fight for Hope and will continue to pray.
ReplyDeleteI got onto your blog from my friend of mine on facebook. What journey you have been on as a family. I connected immediately to it because my cousin like Hope was born with HLHS. She had a very rough road to where she is now, the first few days/months were the hardest. My aunt did not even know that she had this condition because the doctors missed it in ultrasounds. What a shock for her and my family. I wanted to tell you that your faith is amazing, that and your family supports will help get you through. On those days where you feel like you can't take anymore, don't be afraid to lean on someone. You are entitled to feel that way, you are going through something every parent dreads. My cousin made it through all her surgeries and has had a life long struggle with gaining weight but we are just so thankful that she is here at all. She is 15 and there were times where we didn't think she would make it past 1 month, then 3 months etc. So there is HOPE. And how fitting that your daughter's name is that very meaning. I am pray for you and your family and little Hope. For healing, strength, understanding and courage. You will need it and you can do it.
ReplyDeleteFrom a stranger who cares XOX