January 23, 2010

This is a day I will never forget… just like the day I got married, the day my mom died, the day Nicole was born and many other important days in my life whether good or bad.

It was this day that changed our lives forever. It was this day when we found out that our precious daughter had been born with a congenital heart defect and because it wasn’t diagnosed for 15 years it led to another rare heart condition as well as a rare lung disease. At this point, there is nothing that can be done to correct the heart defect because of her lung disease and unless the heart defect is correct it will not help her lung disease. All they can do is give her a cocktail of medication that will slow down and hopefully stop (for now) the progression of her lung disease but at this time will not cure it. This event started off a domino effect. It is very apparent that Rick lost his job because of Nicole’s health issues but of course we have no proof of this.

The Bible says that all things work for the good for those that love the Lord. I say this over and over and still don’t see how some of the difficulties we have had since this day have worked out for the good. It has been a struggle for me to come to terms with the fact that my daughter isn’t going to get better she remains stable and I am so very grateful for this but she won’t get better which is what I want more than anything else in this world. I am not strong enough to go through what the doctor’s have told me she will go through with this illness.

I have struggled with being content for a long time it just never seems like I am happy with what I have. I was watching Joyce Meyer the other day and she said “Contentment doesn’t come from what you own it comes from your relationship with God.” I never thought of it that way… maybe it isn’t the stuff I am discontented with and it is God because he has done this to my daughter and my family. She also said “contentment comes from no longer needing to impress people” I haven’t arrived there yet but I will strive for that.

I won a book of my choice from Denise Brown from caregiving.com  and I chose “Take Time” I was looking at it and I have to rate my level of happiness and I have been thinking about this since Friday when I received the book. I don’t think that I’m that unhappy I just think that I’m discontent and I feel that there must be more. I feel that I finally know my calling which is to be a voice for my daughter, her illnesses, and for caregivers and my vision of these things have not happened the way that I want and/or thought they would. It is so hard to explain.

I hope that I will be able to stay positive on this day and not try to look at it as the day my life (and my family’s) fell apart even though it is. My mom passed away in April 1998 (she was diagnosed, had surgery and died during this month) and I can tell you every year I would say I hate April and then in April of 2009 I found out I had carcinoma in-situ and I thought you know I can’t continue to hate April. I have to let it go and you know in 2010 I was sad on the day of my mom’s passing but I didn’t focus on the other bad days in April.

Thank you for listening to me ramble and I hope that I made some sense.

Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
"If you don't like something change it, if you can't change it change the way you think about it."