We knew from the day he was born that there was something up with Chris’s kidneys. But honestly, that was about all the information we had. It took almost five months to have his obstructive uropathy diagnosed. …I was finally able to ask those horrible questions that began with “Why?” I secretly knew that Chris was ill because I was old or fat or I had sinned at some point in my life. I asked if it was the CVS procedure that I had at 11 weeks gestation as part of genetic testing. I was certain that the sampling needle had nicked something somewhere. My son’s doctor explained to me that maternal guilt is the most natural thing in the world. The baby was created inside my body and when he was born, there was a problem. So, I thought, it had to be my fault. The problem is that I’m not responsible for the things in my children’s lives that I cannot control. And there are more of those things than I care to admit, even today, 10 years later.
What got us through
Mom: We had a lot of support from our church, even just bringing meals. We had good family support, keeping our other daughter when I had doctors’ appointments with Sophia. And just hanging on to our faith in God and hoping and praying.
Dad: Yeah, I think that’s what got us through: family, friends and our church. And definitely our faith and prayer.
Parents of Sophia, 4
I needed to separate myself
When I initially went back to work full-time, people were protective of me, and I just asked that people didn’t ask me a lot of questions, because work for me was a way to get away from everything, and they really respected that. At the same time, I think it was awkward for some people because they wanted to ask and show their concern, but I really needed to separate myself, and that worked for me.
Mother of Hannah, 4
I quit working because my son needed 24-hour care. I started seeing a therapist to talk about my fears and concerns that I didn’t want to show my son. I believe that was a big help. I didn’t carry them inside; I let them come out.
Do what you got to do
We just kind of went with it. A lot of it, you think back and you’re like, “How did I even do it?” But you just go through the motions: you just deal with it and do what you got to do. Luckily he was our first child, so we really could focus all of our attention on him. My husband and I just kind of leaned on each other. We have a huge support from our family – both sides, his parents and my parents – so we had family support for anything we needed.
Mother of Noah, 5
My worst fear
Just prepare yourself for the worst and then hope everything comes out okay…I still have day-mares, I guess you’d call them: I sit there and think, “What would happen if something went wrong?” And I think about funerals and burying my son, going through that whole process and losing him, and how would I deal with it? How would my family deal with it? Stuff like that. Even though he’s as healthy as he can be right now, the healthiest he’s ever been, I still have that problem where I do think that one day I am going to bury him. He is going to die before me, and I do have to go through that, but my worst thought is, how old will he be? Will he be an older man or will he still be little? And that’s my worst fear. It’s something I’ll never get over. I’ve always had that.
Mother of Austin, 9
Little processing time
You know, I don’t know how we got through it. I have to be honest, I don’t really even know. It seems like we didn’t really have time to process too much because we were constantly moving – you know, my husband was in the hospital for a good 19 days before he came home, and then my son went right in, and he was there for about 4 or 5 days. So we were on the go so much, we had very little processing time.
[Later] For me, I dealt with my stress through exercise. I never did any therapy, but some people can try group therapy and see if that works, in terms of getting with a support group. It wasn’t the thing for me; I was much more the person that stayed on my own and took, like, two hours of the day for myself. Even outside of work, just to either take a walk or go to the gym or go to this park. I just took some time for me so that I didn’t become completely overwhelmed. Don’t feel guilty about taking that time.
Mother of RJ, 12
Doing my own crying
I never panic, I don’t know why. Even my husband, the whole time he’s like, “You can cry, Kate. You can cry!” And I do, but I always think I can’t let my kids see that – because you’re the mom, you have to be strong. And yes I did cry, when she had her heart attack; I couldn’t even make it up the stairs. I was on my hands and knees in that bathroom every day, praying and doing my own crying.
Mother of Alanna, 15
You are a mirror
You are a mirror to your child…They’re cued into you, so if you walk around like a basket case, you are doing them a huge disservice. The way I found to cope was I talked to a lot of friends and just emoted and got it off my chest. Then I could turn around and be fine with Riley. I would go through hell the nights before the transplant, and just want to break down every five seconds, and then turn around and be fine with Riley, because that’s what I needed to do. Because she was looking to me for an example— to show her that it was okay and there wasn’t a reason to be fearful. So it was a big responsibility, but when you’ve done it and you feel that you’ve done it right, there is no better feeling. It was hard work, but I succeeded. I have no doubt that I have succeeded in how she dealt with all of it.
How the heck did we do that?
Mom: The wait is long, and sometimes you don’t think you could put one foot in front of the other. But then at the end of it, you still see your child laughing, and all of it – it’s almost like, I explained it to my sister this way, you know how when you go into labor and you’re in excruciating pain, and then you go through the birth, and then after you hold your child, it’s like that pain was so long ago and it wasn’t as intense as you remember it? That’s kind of what I feel like now. I mean, everything we went through at the time felt like this was it, like we couldn’t take another step, that we didn’t know which way to go. And now it’s like, “Wow, how the heck did we do that?” And people say that to us, they say, “How did you do it?”
Jess: We went into survival mode.
Mom: One second at a time sometimes.
Jess, 18, and her mother
Not having any control
Acceptance of not having any control was the hardest because I’m a very controlling person by nature. Just accepting you don’t have any control – even still today we don’t have any control! It depends on the team, it depends on the lungs…I mean, we can’t plan anything for next weekend, because we don’t know where we’re going to be. We jokingly tell our friends that some people have a beach house and we have a high-rise in Boston. We’re regulars so we get one of the good rooms! I think that’s my hardest, was acceptance, not having any control.
Mother of Jess, 18