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A Story Close to My Heart

It’s February; and yes, that means it's almost Valentine's Day.  But more importantly to me, it's Congenital Heart Defect Awareness Month!  So while many are celebrating their figurative hearts, I am also celebrating physical hearts. I feel abundantly blessed that my baby with a “special heart” has grown into  such a caring young man. Twelve years ago, I would have never imagined what an impact Isaiah’s life would have on me.  Back then, I had this crazy notion that if I did everything right…followed every rule…and tried to be as perfect as possible, I could prevent bad things from happening.  In essence, I thought I was in control. While I was pregnant, I read books, listened to my doctor, and took care of my body, so when I went into labor seven weeks early, I was disappointed, but I also knew preterm delivery was common with twins.  Having my babies in the hospital was a minor setback, but one that would be temporary.


I could never have prepared myself though for the news that I received the day after their birth.  I was sitting in a recliner between my babies’ isolettes. I wasn’t allowed to hold them, but I just liked being close to them.  The NICU nurse came over and asked if it was an okay time for the pediatric cardiologist to talk to me. I assumed he probably talked to all the NICU parents, so I was shocked when he told me that my baby had a heart defect.  He explained that Isaiah had a narrow aorta, a bicuspid aortic valve, and a misshapen mitral valve. I sat in stunned silence. I honestly thought there had been a mistake; they must be talking to the wrong mom. The doctor went on to tell us that Isaiah would need surgery to correct his aorta, but they would wait as long as possible.  Open-heart surgery on a four-pound baby was risky. He also mentioned that he needed to do an echocardiogram on Natalie to make sure her heart had properly formed.


Needless to say, I was devastated.  I didn’t eat, I didn’t sleep, and I felt like I couldn’t breathe.  I felt so much guilt. Maybe there was something that I could have done to prevent Isaiah’s condition.  I wished that it was me and not my baby going through this health crisis. I was a complete mess. Fortunately, I was surrounded by an amazing support system.  They listened to me, cried with me, and prayed with me.


The day I was discharged from the hospital was one of the worst moments I remember.  I cried the whole way home because I had to leave my babies at the hospital. About an hour after we arrived home, I got a phone call explaining that Isaiah’s condition had worsened.  They were not longer able to get a blood pressure in his legs. He would need surgery at U of M as soon as possible. They said we could spend the night at the hospital in a little room next to the NICU before he was transferred to Mott’s Children’s Hospital.


The following day, a team arrived to prepare Isaiah for his ambulance ride to U of M.  They had to put him on a ventilator, he had and IV in his head, and he looked terrible. I was allowed to hold him for a few minutes before they took him away.  It was the first time I really wondered if my sweet baby boy would live. How could I be a good mom to Natalie without Isaiah? I begged the nurses to let me ride in the ambulance, but they said I couldn’t.  The NICU nurse promised me that she would put her own life on the line if it came to that

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We followed the ambulance to Mott’s Children’s Hospital.  They scheduled Isaiah’s surgery and we got a room at a hotel connected to the hospital.  We could visit Isaiah whenever we wanted and while I loved being near him, I was so overwhelmed seeing him hooked up to a machine that breathed for him.  He looked so small compared to the other babies around him. I looked at his bare little chest and realized that that was the last time I would see it without a scar.  I remember being in the room with my dad. I cried and told him I was worried that Isaiah wouldn’t be able to do the things others could when he was older. What if he couldn’t play with the other kids?  What if he struggled in school? What if he couldn’t play sports? My dad listened to me and hugged me. Then he said something I’ll never forget. It was simple and yet profound. He said, “Will you love him any less if he can’t do something?  Isn’t it enough for you just to love him just the way that he is?” For me, that changed things. I couldn’t control the situation. Me trying to be perfect or worrying about the future could never change the situation. I just had to trust God and love Isaiah.  I felt a sense of relief after that. Once I handed it over to God, I felt like I could breathe again.

The first time I saw Isaiah after surgery, I held his tiny hand in mine and I whispered God made me your mom on purpose and I will always love you no matter what.   I don’t think I realized it then, but just as much as Isaiah needed me to be his mom, I needed Isaiah as my son.  Isaiah has endured other surgeries since then and always takes it in stride. He’ll have others in the future, but we don’t dwell on that.  He never uses his heart condition as an excuse. He has learned to embrace all his battle scars, namely the “exclamation point” on his chest.  All of this has made him into the amazing ten-year-old that he is today. Since he has been small, he has been easygoing and loving. He’s the first one to want to help someone else.  He has a selfless heart that thinks of others before him. He gives me a hug and kiss every day and always tells me he loves me. Not only is his physical heart “special” his metaphorical one is even more special.


This experience has also made me a better mom.  When my babies cried at night and I didn’t get much sleep, I was thankful that they were alive to cry.  I try not to sweat the small stuff. I realize that I can’t control things, and it’s a waste of time to try.  I know that bad things can happen even when you try to be perfect. God has a bigger plan that I can’t imagine.  I mean, I was worried that Isaiah wouldn’t be able to run around like other kids. Now, he plays basketball and soccer and no one would realize what he has overcome.  My job now, just like it has always been, is to love him just the way that he is.



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