My husband has been a huge anchor for all of us. He is very spiritual and I am not. I am the one that is more negative towards everything. Honestly, I just rely on him and he relies on me. It is funny because we anchor each other. When he is really stressed I say, “Dude, it’s going to be okay. We are in and out today.” I was really stressed with this operation and he was really stressed with the first one. I think it is just the support that we give each other and everyone at Children’s has been really good. Any questions that I have that they don’t know, they say they will get back to me and boom they have. They have eased us with any sort of questions.
Mother
Early intervention
I would say the most support I got was through early intervention and working with the workers who understood medically where I was coming from and understood my worries. My mom and dad were just trying to be a mom and dad, and said, “Don’t worry. It’s going to be fine.” Well, you know, that’s not the answer to it all unless you physically get in there and make things happen and that’s what I had to do.
Mother
An empathetic boss
When we came upon the situation where Justin was maybe two to three weeks into convalescing at home and my husband needed to travel, all of a sudden, we needed to think about home health care people coming into the house to help me. And at that point I learned that they’re wonderful, but they’re only there to one or two hours. They’re not there around the clock with you when your child has to pee at three o’clock in the morning. So it was really difficult. My husband actually had to cancel many of his trips for work so that he could be home with me to help me get Justin in and out of the bed, to take care of different needs. So he was lucky he had a boss that could empathize with this situation and allow my husband to take that work time off.
Mother
The doctors still can’t tell me why he woke up
It is a difficult road, but you get the strength. You can get strength from a good support system, if you have friends you can talk with or if you have family. I’m an only child, so I get all my strength from my other son. One time, Kaleem and I thought we were gonna lose Kaleb. Kaleb was having a fever and he went off to sleep, and the doctors couldn’t wake him. So, they had to run tests to see what was going on and that type of thing. Kaleem thought this was it. We all thought that–the hospital gave me phone cards to call home. Kaleem knelt by Kaleb’s bed and he prayed for the child. Kaleb woke up that night at about 11 o’clock, and to this day, the doctors still can’t tell me why he woke up.
Mother
I have met other parents in the hospital, and we have been each others strength. I drew strength from some of the people I met here, and they drew strength from me. We basically tried to help each other out in any way possible. If they knew something about some program I don’t know about, they would tell me, and I will tell them if I’ve heard about something that they don’t know about. Most times, we have so much in common because of the needs of our kids. As a parent, you want to do what’s best for your child, so you share that knowledge, your experiences and your information. As long as you have a good support system with your friends backing you up, and most important, as long as the team that is dealing with your child is backing you up, you can feel confident.
Mother
Community Support
Try to talk to other parents that have similar issues. It’s very lonely and emotionally draining if you try to do this alone without community support. Even if you have family support, it’s isolating. Once you open up and meet other parents that have similar issues, not only does it give you strength that someone else is going through this and they can get through the day, but it also is a great resource for information. And there’s so much information out there and resources that are just floating around, but when you get together with a group of parents, you can pull it together.
Mother
How the hell did we survive?
Of course as a mom, you think you can do everything. It was really, really crazy time. During the past fifteen years we’ve had other crazy periods in our life, but when I look back at her infancy I think, “Oh my goodness. How the hell did we ever survive?” I think part of the reason that we survived is our great support system. Both our families live locally; we have a great pediatrician. And my husband and I have been together since middle school. We weren’t dealing with being newlyweds when we had this issue thrown upon us. We had been together for ten years before we got married so had waited five years before we had kids.
Mother