Tuesday, February 12, 2008

I Can See The Light!

Last night, Tim stayed home with the kids and I went out to dinner with my friend Jody. I had a GREAT time. The icing on the cake was that on my way home I was able to talk with my friend Carie who just moved to California. I have to say, it was just what the doctor ordered. I can't tell you how much visiting with them filled up my bucket. This winter (and staying cooped up with Ethan) has really taken it's toll on both my mental and physical health. I've gained weight and have had the blues. I have tried to stay positive and keep things in perspective (because believe me, I KNOW what a bad day is like). However, it is hard to stay motivated and get anything done when you feel so isolated. But, with that said, I can see the light at the end of the tunnel. The days are getting longer and the weather is slowly getting better. In fact, when I was at work this last weekend, I weighed myself (fully expecting to have gained who knows how much) and was pleasantly surprised to find that I had lost 5 pounds without even trying! (I guess that just goes to show how much I actually have to lose). Anyway, today the weather has been great! I opened my blinds to let the sunshine in and just that alone gave me some energy to try and get the house clean. Now I am not unrealistic. I realize that it is going to take a little bit more than the sunshine to get this house in order, but it's a good start.

Today was Ethan's 9 month check-up and immunizations. It was by far the best check-up we've had thus far. He had a huge growth spurt and weighed in at 19 lbs 2 oz. As far as percentiles go (compared from his visit just last month) he went from the 20% in weight to the 90% and from the 25% in height to the 75%!!!! His head even grew and went from the 55% to 75%. It is good that he grew in all 3 areas because this shows that it is "true" weight and not just "water" weight (which would be a sign of congestive heart failure). I went into this appointment worried that he hadn't been getting enough to eat or that his heart may have not been functioning as well as it should be because I've been noticing that his legs have been looking skinnier. I guess it just turns out that he was just growing (and stretching). He grew 2 inches in this last month. I don't think I will ever stop worrying.

It is so hard sometimes to be a mother of a child with a such a serious and chronic health condition. With all of my other children, I never been nervous about well child visits and in fact, didn't think much of them at all. But with Ethan, I am always nervous that although he may be looking and acting well, that one of these days someone is going to pull the rug out from underneath me and my world will again turn on it's head. I realize that this is my own struggle and doesn't make a lot of sense, but I feel like I constantly have to remember all of the lessons that I learned when Ethan was born or else something bad will happen to remind me. I am SO grateful for Ethan and his progress and feel like I need to continually prove I am worthy to keep him here with me on this earth. In my mind I WANT to celebrate the good days (like today) but I hesitate letting myself get too comfortable with his good health and try not forget that he is sick. Please don't get me wrong. I LOVE it when I forget that he is sick or different from my other children. But I fear that if I get too good at blocking out all of my fears, that God will mistake that as me mastering my challenge and need to give me another one. I completely realize that this is irrational and logically makes ZERO sense but the fact is, is that I would do ANYTHING to keep him here with me and somehow I guess these mind games make me feel like I have some control in this situation. I just need to try and find a balance of enjoying the good days when we have them and yet be realisitic about the cards we have been dealt. I guess I just have to accept that being his mother means that I will constantly worry about him and that I will always feel indebted and blessed to have him in our home.

With all of that crazy talk being said, this week from February 7-14th is the national week for CHD (congential heart defect) awareness. There are so many children and families that have been affected by this disease which can manifest itself in many different forms. With that being said, we are very lucky to be a part of a local on-line support group which gives us encouragement and many people to talk to (who may have the same crazy and conflicting emotions that I have) who have been through many of these same experiences. This is a new group, and although it is growing very fast, it is still trying to get up on it's feet. This week has been full of fundraising by individual members of the group which will go towards helping other families of heart kiddos with meals, gift bags, and supplies while hospitalized as well as to aid in financing a summer camp to meet other families and heart patients within this group. There is a website for this group (http://www.intermountainhealinghearts.org/) which has the ability to take monetary donations (in honor of a specific heart kiddo if desired) to aid in this endeavor. This group is non-profit and is completetly volunteer based by the families themselves of heart children. Any donations would be greatly appreciated and are tax deductible. Please consider (and then make, ha ha!) a dontation.



Mike & Rebecca said...

I know exactly how you feel. I do the same with Brinley and know no matter how much they tell me she's all repaired, I still worry about every little thing, She's 3-1/2 and I fill like I'm alway's jumping. Mike always tries to tell me she's a normal little girl now. My comment back is always "I watched her go through to much." But were getting there.

buddens said...

That's got to be hard. Like a rollercoaster through your thoughts ... on one hand, this ... on the other hand, that. I'm sure you're doing a great job with your kiddies and you're likely much stronger than you think you are!