My Many Hats

Wife: Taking the time to put aside all of Evie's current issues, I must take a moment to acknowledge my Husband. I read an astounding statistic the other day. According to some study done, by someone I can't remember, 80% of children with special needs parents end up divorced. (sounds real legit, huh?) I couldn't believe this. Then I stopped to think about it. Patrick and I do not see each other. He goes to sleep almost immediately when he finishes dinner at night. Then I stay up with her through the 12:00 feeding and he then wakes up at 2:00 to feed her through 6:00. We hardly talk about anything else but his horrible position at work and Evie. He hasn't even had the chance to really digest what our daughter and I are going though. We had a long talk last night, for the first time since she has been home, about G-tubes and her problems. I realized I talked more to people from Church about her condition than I talked to him about it! Thats just sad. He didn't really understand how emotional it can be and how scared I really was. It felt really nice to be able to share my fears with him. I knew having a baby would be hard, but who knew that it would be this hard? I love him very much and am so excited about the summer. Its bad that I am already dreading August.

Mother: I get the absolute pleasure of seeing her grow daily and take on new skills. This is so amazing. Coming from a time where she was in the NICU, hooked up to moniters galore, eating from a tube, and seeing her sleep for nearly 24 hrs straight, to now, where she is awake for most of the day. She eats so well, plays so much, and offers me many smiles. She knows her Mommy loves those!


Advocate: I was just recently reacquainted with this word. I have to think like this because I am her only advocate. She has no voice, and I have to learn to speak clearly and effectively to let the Doctors and nursing staff know how the cow eats the cabbage!

Our most recent problem: Evie got sick! Of course, the first time she gets sick, her regular Ped. isn't in so we have to go see the on call Dr., who knows NOTHING about LCHAD. This is so aggravating because I, again, have to explain it, and, of course, he then thinks he knows better than I do about her condition, which he doesn't. They have educated me enough about her condition to know that pedialite, while good for raising her BS, is not sufficient nutrition for an LCHADer. He tried to convince me to give this to her every 3 hrs for 6 hrs if she were to vomit again. Now, this would pose 2 problems: 1) She would get full off of the pedialite and not want to eat her reg. formula. 2) Her BS would no longer be a sufficient way to tell if she was in a metabolic crisis. In essence, it would be like giving a toddler only popsicles instead of real food. And I am sure there are several other reasons why an LCHADer should not receive pedialyte as a complete replacement for formula.

Another issue with being her advocate: making choices. After having spoken with the on call Dr, about giving her pedialite, I decided to call her specialist. He then recommended, if she were to vomit again, to #1 give her oral glucose gel, #2 take her to be admitted for an IV of D-10 (concentrated glucose), #3 get her a feeding tube so that we wouldn't have to worry about her appetite or her reflux. This is disheartening. Its hard enough seeing your child sick, much less seeing them sick in the hospital, hooked up to IVs and monitors. She would feel much better at home where she can sleep in her crib and play when she feels better, rather than being permanently attached to a machine and having a needle in her arm 24 hrs a day. Her disposition last time showed me this. Now, I understand, if she needs the D10 then she needs it. It wuld certainly help her to get over the illness better and help her to keep her food down. But the only way to administer this is to be admitted. So when should I make that decision? I guess when she refuses to eat at all and is vomiting when she does. Its so hard to tell. Everytime she has an issue with vomiting I play this over and over in my head.

Me: So with these 3 hats, where does that leave the 4th hat? I guess in the closet in a box. It is hard for me, because I have completely given up who I am. I love my husband and my daughter, but I miss the old me. #1 I miss exercising. I hate my post preganancy weight. I always told myself that I would never be one of those mothers who lets their child completely dictate who they are. They lose their body, they lose their time, they lose hobbies, etc. #2 I miss teaching. I desperately wanted to get my certification to teach music in public school full time. Right now, feeding her like we are, I hardly have time to shower, much less go to school again. #3 I miss singing. A good friend told me once that my abilities were now going into my daughter. I do sing to her all the time. It is one of the only things I can do to calm her down (that and some infant massage) My days and nights go into taking care of everything and everyone else other than me. I do sometimes steal 30 min to take a hot bath. Last night I was able to read the Bible some, which was nice. #4 I miss working at church. I see a need and I want to help fulfill that need, but then again, that would be another hat to wear. I really do understand fully the need to have Grace Respite: a night where parents of special needs kids can drop them off to enjoy a date, or even just some alone time at the house.

Summary: (its about time!) Even with these many hats that I seem to wear, I would not change anything. I love my sweet Evie Grace. She has such a sweet spirit and is so loving and kind. Her Dr was talking this morning about an altered enzyme that would help her to be able to digest and process fats. Scary, but it does provide hope. Everything has a season. Right now, I need to focus on my marriage and her. God will one day reveal his plan for us. Once again, thanks for listening.