I try not to live in fear of what the future holds, but live every day to the fullest. When I start to think about the sad things in life I just push them aside and tell myself..."Not today". Well I've been telling myself that all day and I just can't stop shake it.
I find myself letting Arianna get away with alot more than I should. I can't stand hearing her cry or watch her get frustrated. The doctors tell you not to treat her any differently, to raise her like you would any healthy child. But I can't. I thought after her heart surgery things would be different...maybe even normal. I guess I have to accept the fact that we will never have a normal life.
As she gets older I start realizing how uncertain her future is. I don't even know if she will be allowed to attend kindergarden. I get so frustrated because winter is almost here and with winter comes isolation. I thought we would only have to do this for the first year and here we are going into our 3rd winter....in isolation. Today at the doctors we talked about her getting Synagis shots for this upcoming season. Insurance companies won't pay for a child over 2 years old to get these shots and Arianna will be 2 in November. I am concerned because this little cold has caused her probelms so what would a winter cold, or even worse, RSV do to her. The pedi told me she is scared about Arianna as well....not something you like to hear from your doctor. We are going to try and get her approved for another year but it's unlikely we'll get it. So what am I suppose to do...keep her in isolation AGAIN? Or let her go out in public with the risks of catching something that will put her back in the hospital, with an even higher risk of catching RSV. I just don't think her lungs could handle RSV right now and that terrifies me.
I just wish things were normal. Tonight I was having the best time with Arianna. She was doing something so silly and cute and I started crying. Why is it when I find myself being completely happy, looking into my daughters eyes, I get so scared. The older she gets the more attached I get and I know we will have our rough days ahead. I hate this CHD life and all the heart ache that comes with it. I just want to live like every normal person and not worry if a common cold will kill my child, or a visit to the dentist. I want to let her play with other children at church, go to our support group meetings, go to the children's museum, and do everything else she hasn't been allowed to do. I know when she gets older I'll have to explain her health issues to her and that breaks my heart. No child should have to carries such worries with them.
Sorry for such a negative post, I guess I just needed to get this off my chest. I know so many of you have felt this before and I'm sure I'll push it all back inside and go on like everything is okay.....because that's what mothers do.
6 comments:
You're right... that's what mothers do. And Arianna is sooo lucky that she has a wonderful Momma like you! I've had sooo many days where I feel that you've just summed everything up. "What if..." or "Will she ever..." Then I finally have a realization that she IS normal. Her exentricities just make her special compared to anyone else! Yeah, its tough thinking about how something so simple could take her, but I now find myself stopping those thoughts by thinking that something so simple could have the same devastaing affect on Gabby & she doesn't have the CHD component.
I guess what I'm trying to say is don't think about the 'what ifs' it'll only bring you down. (I say that after having many days where I do the same thing) She is a precious, beautiful gift from GOD! He is in control of all our lives & has the perfect plan in place! Just enjoy Arianna every day to the fullest & (though its VERY hard) ignore those thoughts!
Here's an idea... you can move to Ohio & bunk in with us for the winter! Then it won't feel so bad to be stuck inside - the girls can play together!
Give her big kisses from us & give yourself a big hug from us! We love ya!
Tina, Jon, Gabby & Vaeh:0)
PS - call me if you need to talk!!!
I'm so sorry you are feeling like that today; Arianna obviously brings you so much joy. It's important to focus on the positives, but it's perfectly fine to vent when you need to. Didn't you say Arianna's counts were good last time she saw the immunologist? Would that make a difference in your decision about isolation? Sadly at the end of the day there is no textbook answer. You are going to have to make those decisions yourself, and try to be happy with them.
You KNOW that you will do what you belive is best for your daughter, just follow your heart.
Vanessa...I am so sorry you have this hitting your right now. I have a dear friend I met through our heart support group back before Micah was even born and she told me when Micah was around 18-20 months old that this is a "normal" thing that happens as our kids hit ages that they "should" be doing things or that we expect of them...she calls it the heart mama blues...you have them! I wish I could make them go away for you, but I seem to have them all the time too. You know as well as I do that they do come in and out of our lives...we have days that are fantastic and we only think about the heart a few hundred times a day...and then there are the days that we cannot stop thinking about the heart and all the other issues and all we can do is cry. It sucks...bad...but we are stuck here. Try to think of the good that has come of this...you have started a support group to help other families...had you have ever done that if Arianna was not born with her CHD? Probably not...I know of at least one person you have helped tremendously in your journey...and that is me...had Arianna not had her CHD, I would be without one of the people that I feel so close to and that would make me sad. Thank you for traveling down this path with me. I will pray that tomorrow brings you less tears and a little less worry...try to enjoy that precious girl...tears or no tears :)
Much love,
Samantha
Hope that today has brought you a little more peace. Hang in there - those feelings got me not too long ago. It is hard to shove them back into the back of your mind - but try to do it.
Love on that little girl.
<3,
jennifer
Some days it just hits me too - I can't stand what Sebastian has had to go through, and what he may go through in the future. All we can do is take the best care we can of our kids (which you definitely do!), try to appreciate the good in every day, and accept that the rest of it is out of our hands. You and Arianna are in my thoughts. I hope better days are ahead.
Oh Vanessa, I know where you are coming from with a lot of these emotions. Nothing is "normal" in the world of CHD. It's a yucky, scary world to be a part of. And as you said, the more time that goes by, the scarier it becomes because the closer we are to our little ones.
I get into funks like this, too. Whenever I do, I try reallllly hard to focus on the positive parts of this world. There ARE positives. Like the fact that YOU understand how sweet and precious your daughter's life is much more than the average parent does. Every little thing to you is a miracle. Think of how far you have grown as an individual in the past two years. These special little kids teach us parents SO MUCH about life.
I hope you are feeling better. Love on that little girl and try to take it one thing at a time. If you look too far into winter or RSV season you'll drive yourself mad. As always, call or email if you need to cry or vent. xoxoxoxo
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