No "real" title

I don't know if I will actually hit the "publish post" button at the end of this post because sometimes I just write and feel better without ever "publishing" my post. I often think of who my audience is going to be when I write and I know that it is mostly families of children with RTS. I know that they are the ones that can relate to me the most, but sometimes I feel that I complain a little too much about the difficulties this road with RTS can bring.

It's the eve of Nathan's 2nd birthday and the last few days have brought about some emotions that I wasn't quite prepared for. I know anniversaries of traumatic events can bring back those horrible memories and can often cause one to re-live the event over and over. In a nut shell, that is what is going on for me. I guess what I struggle with is that a child's birth should not be remembered as traumatic. It shouldn't be filled with whisking him off in an ambulance to a children's hospital where he will be hooked up to machines to help him live and being told that he has been diagnosed with a genetic syndrome that will require lots of surgeries and interventions to keep him alive. That's just not how life should begin. And yes, I'm still protesting a little, it's my nature to protest difficult things.

For the most part, Nathan is doing well right now. His health is the best it has been since he was born. I never really believed other RTS mommies when they told me that things would get better because at 18 months old, they were not better, they were getting worse. But 6 months later, things have improved...they were right. We are miles away from being "better", but we are on the path to getting there.

I guess if I really let down and am honest, what all of this is really about is how the past two years have effected my sweet, ambitious 4 year old. Yes, I know kids are resilient, forgiving, yadda, yadda, yadda. However, I feel like I missed the past two years of her life, the only child that I had the opportunity to have a "normal" childhood with. Instead, I have spent he past two years farming Bella off to my mom, sister and a family friend so I could take Nathan to all of his doctor's appointments, therapies, and hospital stays. Yes, I could have chose to take her with me, but those environments and situations were not where a two and three year old belonged...for many reasons.

It grieves me that we have had to keep her away from typical social things that preschool aged children get to do in order to keep her brother healthy. Yes, it has paid off for Nathan because he has only had one little cold since the beginning of December and has stayed out of the hospital, but we can not get the time and opportunities back for Bella that she has missed out on. Many people do not understand why we chose to do this, especially since Bella is so active and social. But many people don't walk in our shoes and know that sickness is what causes Bella more distress because she ends up getting shipped off and gets less attention so I can care for her brother. And believe me, I have done everything I know how to do to find someone who can take care of Nathan and all of his medical issues so I can have time with Bella. It's not easy.

I miss Bella. I grieve the time I have lost with her. I have missed half of her life and I can't get it back. I feel like I have failed her. She is not the one that has "special needs" attached to her, but she really does have special needs. She needs her mommy's time and attention, the same attention I give to her brother.

So on this eve of Nathan's second birthday I will continue to reflect and allow myself to "feel". But then comes tomorrow...a big celebration for a little man who has come so far!

Oh yes, I am going to hit the "publish post" button, why not? I don't need pats on the back to tell me every thing is going to be o.k, it's just where I'm at today.