You are always going to have trials and tribulations. It’s definitely good to cry and to vent because you don’t want to suppress everything that you are feeling on the inside. You definitely have to try to pull the goodness out of the things that you just came through in order to get you over the next challenge.
Relying on past experiences
I think the greatest stress is the unknown. Because when you don’t know what’s going to happen or what’s the next step, it raises your stress level. You just have to rely back on your past experiences like “ok well, if he made it through this last surgery and I remembered I reached out and I spoke to a certain amount of people…”
Take care of the caretaker
I would definitely say, take care of the caretaker so you can take better care of everyone else. What I do for myself is once a week we go out to dinner with my fiancé. I make sure that I have once a week that I get out of the house. I just signed up for a hip hop class that I will do on Thursdays after the girls go to bed. It’s from 8-9, so I’m not going to feel bad about leaving, because I have a nurse that’s going to stay here till 9:15 so I can get out of the house and do that. And the other thing I do is I wake up in the morning before anybody gets up and I go for a walk with my dog. I also work I’m a teacher, and I really enjoy it. And I feel that I do that for myself too.
Darius’ biggest strength is that he loves music and has the ability to free himself using music during hours and hours of physical therapy. It frees him and music also frees me too. Parents should find a favorite song or a favorite CD. Allow yourself to be free in that music. It frees up your mind before you go to the appointment. We listen to music every day. We sing every morning. When he gets dressed, I make up songs it makes it so much better. At Children’s Hospital, they have a lot of volunteers that come around and play, and it’s soothing.
I would say that my main stress relief is God, and the relationship that I have with Him. I pray. God has been in my life. He’s gotten me through this difficult journey that we’re on, and he’s given me peace. It’s not to say that I’m not having those feelings, it’s just that I know that He is here to help me and support me. I speak with Him and He answers me in certain ways that I feel comforted, or I speak with someone and they say whatever, but I know its God taking care of me, and she’s in His hands. I know He loves Kayla more than I could ever love her, and I know how much I love her. So He is my stress relief.
What helps me is that I help out other people. Now what I do is, whatever we have for Kayla, I give it away. If she doesn’t use it anymore, I give it away. And I feel good about it. I just pass it on.
We have to do the best we can
I get sad because I see children out there that are normal, and I wish I had my boys, and I wish my daughter were walking and talking, but that’s not what God gave us, so we have to deal with it and do the best we can.
If I can make her smile, that’s good enough for me
Every time we try to do something, we try to do it with her. It’s a stress reliever because if I’m not home, I’m dying to get home to see my daughter, you know? And I help out other guys who work on motorcycles. That’s my stress relief. Job wise, I’m stressed out, but that’s another story. My wife is legally blind, and she was a school teacher for 16 years and she had to stop teaching because she can no longer see. That’s stressful, you know? I got hit twice no, three times four times! I mean, you can be very easily taken down by those negative things like alcohol, tobacco, drugs. Those things are an easy way out, and I don’t root for that. My way out of coping is to deal with her. If I can make her smile, that’s good enough for me.
After getting Madison situated, I had to keep a medical journal because we were trying to track so many issues back then, so by the time that I would get done with that it would be 9 10 o’clock at night. I would just go out and walk with the dog for an hour and just cry and then I would just come in and go to bed. And that was it. That was the only way I could try to shut my mind off at night. Then it would start all over again.
Being there for each other
It was a very stressful time. She was a wonderful baby, and yet it was also very difficult. I don’t think her mother and I thought of anything else, and I think she consumed all of our energy, all of our attention and all of our emotions. So how we got through it I think was by supporting one another, being there for each other, having family and friends nearby, pouring ourselves into whatever extent we could and do our jobs. When we left home it really was a relief in some ways as much as we worried about Emily, we also could regenerate ourselves. There might have been some exercise along the way, but not very much. We were tired almost all the time and we didn’t get a lot of sleep in the night. We were chronically tired, especially when Emily wasn’t eating, and when she started to lose weight. Of course then we were quite worried and frantic.
Inject humor in your life
Realize this is a stressful process and take care of yourself. Try to if you can, in the midst all of these meetings and these visits with doctors, find ways to inject humor into your life.
Sleeping with a peace of mind
When there’s a team approach, you can tell that the clinicians are passionate about it and they actually feel for your child and your child is not just another child that they’re just going deal with, like a robot… it makes a huge difference. A huge, huge, huge difference. Because you know what? At the end of the day when you know that somebody else cares, you can sleep comfortably at night. If you know that people are watching over your child while you take a little nap, if you have that confidence in them that they will do their job while you nap, you will sleep with a peace of mind. You’ll go to bed, honey trust me…
I learned to speak up and be honest
I was able to walk throughout the season of fall. It’s a beautiful time of year up in New Hampshire. I walked and walked and walked. That helped me to just have the time to kind of look ahead, figure out what we were going to need, feel as if I was walking some of the stress off. After a while, we got Justin into his wheelchair and walked him in the beautiful weather just to get him out of the house. I had good friends who were willing to come and spend a day with me if I needed it. But sometimes I found that I just really didn’t want a good friend to come into the house just because it would be a little hard to focus on them as well as Justin and his needs. So it was a little hard at times to even figure out how my friends who were wanting and willing to be available to me, could actually be available to me. So I learned to speak up and be honest about what I really needed from them and I tried not to worry about offending anybody if they were really wanting to help, but I couldn’t really figure out how they could help.
My husband and I, since we are frequent flyers at the hospital, we now know that if Katie is in ICU, we get a hotel room next door. We stay there so at least we know we get four hours of good sleep a night. And if we’re comfortable with how she’s doing, we also try to make point to go out for dinner, relax, have a beer. There’s nothing wrong with taking an hour or 45 minutes for yourself to go do something like that.