After the diagnosis, we basically spent a year just learning. For the first 14 months, straight from day one, my wife and I never got a good night sleep. The most we slept was four, maybe five hours, if that, and we each took turns. It was amazing. We never said, “It’s your turn,” or, “It’s my turn.” Because you’d just get up in the middle of the night. Ear infections were severe and constant.

 

We tried sleeping him upside down, sideways, and forward rocking, tilted, but his ears went to his nose and his nose went to his ears. So, the first 14 months were actually horrible. It wasn’t fun being a parent. There actually was nothing fun about it at all. It wasn’t until about the 15th month when things started to get better, and we saw that there was something there, we just didn’t know what.

 

Father

 

Our survivor and my hero
Kayla’s a triplet, and she’s our survivor. We lost our two boys a year apart, and so she’s my hero. She’s the bravest person in this world that I’ve ever known. She may not look at you at first, but once she gets to know you and warms up to you, you’ll see the smile, the spark in her eye. Kayla communicates with her eyes. When you walk in the room and you see Kayla, and she’s excited, you’ll see it in her face, in her facial expressions. She’s always smiling. She’s a very happy child. She doesn’t cry unless she’s in pain or really stressed out. We basically get Kayla to do anything and everything that we possibly can with adaptations. So we try not to limit her. She’s a very brave girl. She’s been through a lot since birth through surgeries and just different types of therapies and procedures that you or I have never been though, and she does quite well. She’s an awesome girl. I’m very proud of her. Everybody loves her. I tell everyone not to stare at her too much because you’ll fall in love.

Mother

 

Talking to family and friends
You can say to your friends and family, “You know what? I’m really going through this situation. I don’t know what’s going to happen. You know, I just want to let you know what’s going on. I might not answer my cell phone and explain it fifteen times, but I’m just letting you know.” So you can say those kinds of things to people and that will help you out. Sometimes we feel like we are obligated to tell everybody everything that’s going on and sometimes we don’t know what’s going on ourselves–we can’t really grasp it.

Mother

 

Maintaining normalcy with in home nursing
I wrote a household guideline form that’s about five pages long for our nurses and therapists. I have a little spiel about confidentiality. You know that we have no privacy, so please don’t place us in an embarrassing situation. Also disciplining our other three children who live in the house it’s not up to the nurses. It’s up to me and their father. Things like people just walking right into the house without knocking and we don’t know they are there until we turn around. I find that a nurse or a therapist will come one or two times and then think they can just walk right in without ringing the bell or knocking at the door. So here, in the household guidelines, I have it clearly stated: please ring the bell and wait for someone to answer it.

Mother

 

Having nursing come into our home was a big change. That’s a big thing that you have to adapt to because you go from privacy to not having privacy in a sense for a certain amount of hours of the day. You don’t know these people, and they come in to help you. We were very appreciative, and still are of course, but that’s a big change. It would be a big change for anyone.

 

Mother

 

Family nights
On Friday nights we have a little family night thing. Last week we all went out to dinner for a birthday. Then we came back and opened presents and stuff like that. The week before, we all watched a movie here at home that we all voted on. And this week is game week, so we will play games at the table. And that’s the thing I have to set up activities that everybody can do so Sarah can participate in them.

Mother

 

We all share her pain
Kayla has the condition. She has the actual CP, but as a family, we all do too, because we all share her pain, her joy, and her limitations. Because of her limitations, we’re limited, but I don’t want to say that in a negative way. It’s just that we may not be able to do things as other families do, but we’ll do the same things, just with modifications. So as a family, we have CP. And that’s okay.

Mother

 

Has it made your marriage stronger
The one question people always ask is, “Has it made your marriage stronger?” and they’ve asked from the first two years, and I always say, “I’m not a psychologist, but you know what? It doesn’t make your marriage stronger, but you better be sure you had a good marriage before any of this happened because all it does is test it. It doesn’t make it stronger, it just keeps testing it and testing it and testing it.” That’s all it does. Sleepless nights, worrying, the meds, sleeping arrangements…

Father


 

The following contributions are from parents talking about how they care for their other children:

Her care required a lot of time. We had numerous appointments for therapy and doctors visits each week. This was tough sometimes on the family. Sometimes we worried that we were not paying enough attention to our other children because of how much time we needed to spend with Stephanie.

 

Father

 

 

Well, what about me?
I had to go to the bathroom and Charlie and Sylvie were coming in off the porch and he opened the door but he tripped, and the door fell back on his legs. I was mad at her that she didn’t wait to hold the door for him. I said, “He needs help,” and she said, “What do you mean, he needs help?” I said, “Come on Sylvie, you know his legs,” and she said, “So what? It is always him,” and she is right. She said, “People always run to him and it is just not fair.” I said, “You know, Sylvie, he is never going to be able to run like you. You beat him in every race. He is never going to be able to play baseball on a regular team. He is never going to be able to ice skate like you” and she just looked at me and said, “Well, why would people treat him different? He is not different.” I tell her, “We don’t think he is different, but other people do.”

Mother

 

Siblings are equally important
I can always feel it coming with Molly when she needs some extra time alone with me. I pay attention, and when I feel like she misses me or she needs a little time away from the nurses and the house, I take her out to dinner. We’ll go shopping just the two of us. Molly and I started this summer taking guitar lessons together. So now Molly and I go to guitar lessons together on Friday afternoons, and we come home and we practice at least three or four nights a week together. And that has been really fun. So it’s important to make sure you have that time. And it’s also important, like when she has something that is bothering her, to listen. Stop and actually drop everything and listen. And say, “Honey, what is it? Why are you upset?” Because we put so much energy into Sarah, it’s important not to forget that the other siblings are equally as important.

Mother

 

I wasn’t available for my other son
I didn’t want to have a second child, and of course by the time my wife was pregnant, that was a non issue. Neither of us really thought about it or planned for it, so there it was. He was born into a situation that was very serious, where Emily’s needs were still very great and where she commanded most of our attention and energy. I know that I was deathly afraid that he would be born with the same kind of need as Emily, since my wife had had three miscarriages before Emily was born. In our minds, I’m sure there was always that risk. As it turned out, the problem was identified, so that my son was born full term and without any complications. That said, I remained emotionally opposed to having a second child for a while. It took a long time–months, really–for me to accept it. I know I was very, very protective of Emily and to a large extent wasn’t available emotionally, mentally, or physically for my son. At times he would cry at night and I wouldn’t respond, and my wife would. We were divided on that issue for some time and she and I separated around that time. It was a very, very stressful time…

Father

 

My girls are only twelve months apart so my pregnancies were very close. And that brought on a whole other set of emotions. Was this going to happen again? How is this pregnancy going to be different? How is this delivery going to be different? So I would say the first couple years of Katie’s life–especially the first year being pregnant again–was a very, very hard time for us. Katie was not an easy baby.

 

Mother

 

Evolving relationships
Relationships are unique and different, and I think that they are unique as well to the circumstances. Relationships are not fixed and they’re constantly evolving and changing. Emily has been an essential and unique member of our family in why we are, who we are, where we are at this time; and the same with her brother Michael. Among other things, he has provided great comic relief and entertainment to the family as a whole; he’s provided wonderful companionship to Emily. Certainly early on, he was very protective and loving of Emily. The process of his integration is an ongoing one. I know that when Emily goes to college, we’re going to experience great changes in terms of family. I know one of those changes is that, for the first time ever, Michael is not going to be behind the scenes. Michael and our relationship will be in the forefront. He and I will be able to, without any sense of guilt or restriction, have a relationship and spend time doing activities that we enjoy that haven’t been able to do except on occasion where I’ve been able to find respite. So, the integration to this point certainly hasn’t been complete and I see Emily’s going away to college as a heartbreaking transition and also an opportunity for everyone to grow and to fulfill their potential to much greater extent.

Father

 

She’s in a very different stage of life
I think we were lucky in that she’s 4 year older than Justin so she’s in a very different stage of life. The week of his surgery and being in the hospital, she was away with a crew team that she’s part of. That worked out really well. I think she didn’t quite understand what this whole process was going to be like so in these months since, we’ve had many conversations with her about the surgery, what it was meant to accomplish, and what the long range goals were for Justin so she could understand the process that we were going through. And we certainly have really tried to take a look at what her needs were and make sure that we were meeting them, while we were so immersed in meeting Justin’s needs. We’ve worked really hard to have one of us take her out for a day and get her a day away from home with plenty of attention on her so that she didn’t feel the total effect of having so much attention on Justin.

Mother

 

Hard for the other kids emotionally
We love Ryan. He’s a wonderful kid and a great contributor to our family. He’s loved by his siblings and all of his relatives. However, it’s difficult to give him the time that he needs because I do have four kids. When he was in preschool and kindergarten, I was devoting, and I still devote, more of my time to him because of his issues. But it was very difficult early on because I used to take him for extra physical therapy after school, and I’d have to do more with him at home. At one point, he did the horseback riding physical therapy, and I had to take him to special swimming lessons. I think it’s hard for the other kids emotionally because they want as much attention from their parents as they can get, as well.

Mother

 

My other children are just so much older now. Leah is going to be 14 in two weeks and we also have a son Kyle who is nine. So this past hospitalization, I think, took a greater toll on them than the earlier one in 2005 because they’re older. They understand more.

 

Mother

 

Empathy and independence
I think Katie’s cerebral palsy has taught my other kids to be very, very empathetic. When they enter a room with a kid with whatever different ability, they think nothing about going up and high fiving that kid. If they see the kid can’t high five, they go up and lift the kid’s hand to high five. It’s not different to them–it’s the same. I think my other two have to be more independent because that’s just the way it is. Their job in the morning is to get their breakfast. You know, what nine year old boy does that?

Mother

 

Maintaining normalcy
When Katie is in the hospital or has an appointment, my husband and I don’t go together so there’s a parent always here for them. When Katie was in the hospital for those long stays, we tried to keep the other kids’ schedules the same. Came home, off the bus, and came home to the house. And then from there, they went to someone’s house for dinner, but we tried to have them sleeping in their own bed every single night because I think that’s important that the kids still have some normalcy in their lives. The rest of the world may be crazy and turning upside down, but they have some normalcy. We also have them call Katie every single morning when she’s in the hospital and I really don’t care what doctors are in the room at the time or what test is being done. When they call, that’s their time. And we also have them call before bed every night. This time around, we set up a Carepage through the hospital.

Mother

 

Great friends
Our other child Jacob, who is 4 years old, gets frustrated at times with his brother’s difficulty processing info. But he is also very helpful and compassionate because of the disability. They are great friends.

Mother