‘Are you sure he isn’t cold?’ His swim instructor constantly asks, concerned over his very blue lips.’: Mom emotionally recalls son’s severe heart disease operation, ‘I know every angel was watching over him’

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“As I lie here trying to put today into words, I have both nothing to say and everything to say. My 3-year-old son has severe heart disease. He always has and he always will. Before September 14, 2017, if you looked hard enough, you knew. The lady behind me at the grocery store saw his scar peeking from his shirt. The instructor at swim lessons constantly asking me ‘are you sure he isn’t cold?’ from concern at his very blue lips. The passer by on the playground would offer cool water because my child was profusely sweating and lethargic. 

Before September 14, 2017, I got up every single night multiple times to administer heart meds because even sleeping was like running a marathon for him. I would sleep on the floor by his crib. I would watch his breaths, count them and wonder how many I had left. I would rock him to sleep while feeling his heart racing against mine. Pulse ox readings at our local urgent care would scare everyone in the building. Hospital visits were frequent for something as small as a common cold. 

Before last September 14, 2017 I didn’t know. I don’t know if he would have prom, kindergarten, marriage or even another birthday. I didn’t know if one morning I would wake up and he would be gone; me wishing I would have never fallen asleep so that he didn’t pass alone. I didn’t know how much time I had left. I didn’t truly know how scared I was, how untrusting I was of his current state and heart. I didn’t truly know the pain I was enduring worrying him as I tried to put on a brave face and push through. 

Before September 14, 2017, I had planned my son’s funeral multiple times. I had cried brutally painful tears which sometimes turned to just a moan because I had none left. I had almost lost faith several times. I had questioned God, yelled at him and begged him to take me. I had fought so hard to the point where I didn’t know if I had anything left. 

13 hours into September 14, 2017, my life changed. I thought I had witnessed miracles in the past but those were just test runs and rehearsals for what was to transpire after I handed him over a little after 8 a.m. What happened in that operating room is something that I dream about every single day. I know God was there. I know every angel we have seen leave this earth was watching over him. I know he was protected by his incredible team. I know that when the anesthesiologist said, ‘We’ll treat him as our own.’ She meant it. 

I want to thank God for giving me this life. The peaks, the pits, all of it. I’m not thankful because I sit here with a good outcome, because the truth is, this outcome could be temporary, and I live each day reminding myself that. I’m thankful for the journey. It wasn’t easy but if it had to happen to someone, I am beyond grateful it happened to me. No one should ever go through this. There’s a LOT of things no one should go through. There’s a LOT of things that are not fair or beautiful or joyous. But I lay here today next to this little boy declaring to you that if not for this challenge, this pain, this gut-wrenching suffering, I would not be me. Finn would not be Finn. Mason would not be Mason. Michael would not be Michael. This past year has taught me how grateful I am for the very broken path that brought us here. 

When you have absolutely nothing left; push on. You CAN I promise. Do not forget the things that you once prayed for. In times of despair pause to realize that it’s just a bad day, not a bad life. It’s not about the outcome, it’s ALL about the journey. I’m all about purpose and I promise you now that no matter what our outcome today, tomorrow or 50 years from now, I will continue to be grateful for struggles to show us strength. I will strive to thank God every day for every additional day he gives me with my babies. I will be patient. I will be thankful. I will take in every single moment good or bad. I WILL find joy even in challenging moments. 

My biggest parenting accomplishment would be to have my children outlive me. I hope that when I am gone that they know that all of the things they loved about me, all of the things they admire and are proud of are because of them and because we didn’t have it easy. We fought, we kept swimming, we did it together and we never surrendered. 

Finn, thank you for the greatest day we have ever experienced with you. We will never give up on you and we have that mantra because you never gave up on yourself. You’ve been through more in 4 years than most people have their entire lives and it took this long for us to realize and appreciate that that’s ok. It’s ok because we forgive heart disease and decide to work with it not against it so that you can have the best life possible. A life that so many have said you wouldn’t have. I’ll never stop believing in you, supporting you and fighting for you. Thank you for trusting us, loving us, making us laugh and most importantly, thank you for being ours.”

Stephanie Tignor Photography

This story was submitted to Love What Matters by Kelly Blumenthal of Prayers for Finn. Follow their journey on Facebook here and Instagram here.  Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘Today is not about what you’ve been through in the past and it’s not about what you may go through in the future. Today is only about today, Finn.’

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