It changes the way you see the world. It’s amazing what one experience can do to recalibrate how you feel about life. Is having a two year old all fun and games and easy every minute of every day? No. But it’s all in the way you see it. Whether it’s a medical diagnosis or a temper tantrum, or whatever it is, if you can pull the positives out of it, you’ll make the best of it and you’ll both grow from it. For Avery, we were able to make the Children’s Walk a really wonderful experience for our family and raise money for Children’s in the process, and we were able to think about parenting in general as, “We can do this. We can do anything now.”
The little things, meeting milestones, the whole “Is your baby crawling yet, is your baby walking yet, do you have them in such and such class, you know, is she potty trained?” None of that matters. It’s all about health. If you have your health you have everything, and you can build off of that. We’re huge believers in finding that silver lining, no matter how much digging you have to do. It’s really made us better parents, made us better people, and if everything happens for a reason, we’ll be better parents to Avery for this.
– Jessica, mother of Avery, age 2, ASD
If I would have had Elizabeth first, that would have been my normal. That would have been all I knew. So having the comparison of this beautiful vaginal delivery, I brought my baby home, took her on a walk the next day, to me being in the hospital for a month and Elizabeth being in the hospital for three weeks, and then just trying to really keep her alive.… I don’t want to make light of this, or use it inappropriately, but one of my girlfriends, another NICU mom, she said “I have PTSD from the experience.” I thought about what she said so much—not that I’ve been diagnosed with PTSD—but there is something like that where it’s so upsetting to even think about. I recognize now looking back at them, they’re healthy and they’re fine, but I told my husband, I’ll still have nightmares where I wake up and I’m like “Oh my god” and I can see her hooked up to all the machines again, or she has an IV in her head again because she kept pulling them out of her hands. It’s things like that that, when you have a healthy normal child you never even contemplate that being a possibility. That’s just beyond the realm of possibility. The biggest concern with Emily was like, “am I going to pump or am I going to breast feed her? I’m going to make her baby food, what’s she going to wear, and what perfect car seat are we going to have?” With Elizabeth, all those things seemed so trivial. It was like, “I need her to breathe and not be blue today.” And Emily, being two and a half, I don’t know if it’s just her personality, but she rose to the occasion. Part of that was my parents being here a lot. They would take her to the NICU and show her through the window every day, “That’s your sister. She’s coming home.” Because she wasn’t allowed to touch her or see her.
– Anna, mother of Elizabeth, age 2, VSD
Day-to-day, it doesn’t really affect us. It sort of pops up when she is off or gets sick with something else and then you worry like, “Oh my God, does this have to do with her heart?” or “Is this going to affect her heart?” This is just a silly example, but in April she got the stomach flu, and we had no idea what was wrong with her. She was super out of it and rolling around on the ground and crying and we were staring at her like, “What’s wrong? There must be something wrong with her heart, we need to call the doctor, we need to call the cardiologist!” I’m sitting there on the phone, it’s raining, and she throws up all over the floor. So, it had nothing to do with her heart, but that’s the first place that your mind goes. Nothing was wrong with her, she had the stomach flu. But when she’s sick, your panic level starts to go to that place because if it were something with her heart, you never would not want to have made that phone call. It’s those times when it pops back up and I realize even though she’s fine and her life is going to be normal, I’m going to have to mention it. She’s going to preschool in the fall, I’m going to have to tell the preschool about it. In all likelihood, they would never know, I have to tell them. If we hire a babysitter, we have to tell the babysitter. It’s those kinds of times.
I think it has made—and this is going to sound really weird—but I think it’s made us actually more relaxed parents. She’s our first, she will be our only child, and I think as people, we tend to freak out about a lot of things with kids, but when your child has had two open heart surgeries before the age of two, and has gone through as much as she has gone through, it’s kind of difficult to get worked up because she has a cold, or freak out because she has a fever or because she fell. Our adrenaline level has run so high that I think we’re very relaxed about a lot of other things that would send an average parent with a normal healthy kid crazy. So it’s weird, but I think it’s actually made us less prone to freak out about stuff. It’s a little backwards obviously, but that is sort of an experience that my husband and I talk about. We wouldn’t wish this on her, obviously, but I think it’s greatly affected how we turned out as parents.
– Leslie, mother of Margaret, age 2, VSD
He was my second child, so I was definitely trying to learn how to care and use the resources of the nurses that came into the home to check on him. We had the home care that came out to us, but there were a lot of sleepless nights, and we had to do the monitoring with oxygen, and his coloring was off, so there would be many times where he would just be in his stroller asleep, and looking cute, but when they’re that little, it’s hard to see if they’re breathing or not, so I would have panicked moments where I would rip him out of the stroller, out of the crib. You have a lot of those moments, where you’re a little more anxious than perhaps you’d be with a child without any medical issues. But we were always in touch with the hospital, if we had any questions, our doctors probably thought we were crazy, but it was a comfort to us, to get on the email or get on the phone and ask any little question. With our doctor at Boston, we would call or email and they would get right back to us. It wasn’t some side person that wasn’t really involved in the care, it was always his cardiologist, or the nurse practitioner who knew him very well. So I always felt like I was talking to someone who knew intimately what had gone on with Johnny, so that helped even though it was scary. Between the first two surgeries, I think that was the hardest time because we were learning how to care for a child with medical needs, and didn’t really know what to expect. So, it was tough. That was the hardest time.
– Abigail, mother of Johnny, age 9, HLHS
I said before he was born, I said, “I’m never taking my kid to Disneyworld until he’s like ten, because he’ll never understand what it’s like.” Well, he’s been about four times already. Because it was, “Will we get him to Disney?” “Well, we don’t know.” So we went on a vacation and we went on a cruise, we went to Disney.
– Scott, father of Austin, age 10, TOF
The first time Chloe and I got on a plane, I was terrified. What if something happens on the plane? I’m sure they’ve got AEDs, but we have to check with the airline that they’ve got an AED. What if something happens when we’re up in the air and we’re flying? We couldn’t go home for a long time, because it was too long of a flight. We flew to San Diego, myself and Chloe. We went with some cardiac group and we met the two doctors who basically invented CPR and AEDs, and it was at SeaWorld, a big event, it was great. But the flight was terrifying, and we wanted to go and we had to make a decision whether we’d go or not. Do I not let her go to SeaWorld and meet these people and meet all these other survivors because I’m scared of putting her on a plane? Or do I vocalize and say, “Yes, she has to lead as normal a life as possible?” So I decided “Let’s put her on the plane.” She was fine.
– Jim, father of Chloe, age 13, CPVT
My husband and I talk this over a lot, so I rely on him a lot, and then the doctors, and then my own experience. I tend to downplay and I tend to let the kids live. I don’t like restrictions. So I’m worried that sometimes I’m too permissive, that I don’t pull on her enough. But I want her to go do things. My husband and I always have a hard time not dismissing stuff, like when the kids fall “You’re fine, you’re fine,” and even with ourselves when you don’t feel well but you have to push through it. So knowing where the line is between “You’re fine” and “This is serious, we have to deal with this” is hard and trying to give your kid some space.
I think what Rebecca would say is that we’re always on her, and we are. I’m always looking to make sure she feels okay, there’s a lot of attention focused on her and her health. Her complaint would be that we are overly focused on her and her body, and I don’t think she’s wrong about that, I think it’s valid. I had to give her some space just to be a teenage kid, so we tried but it’s really hard not to be just nervous and on top of them. I wish I could have relaxed a little bit about that, but our family went through trauma so we all were had this like post-traumatic stress and this anxiety and we’re just trying to get through.
It’s just, kids are resilient. That’s important too, to know kids are way more resilient than we think they are. And you can get through some really hard times and be okay. As a parent you age fast, you go grey and age.
– Amy, mother of Rebecca, age 19, ARVD