I have just recently started branching out and joining groups of other parents with Aicardi girls. This is something that has been extremely difficult for me because its very hard for me to hear about the struggles other people have and most of the struggles hit home for us. I have avoided joining these forums and Facebook groups because I tend to be a little pessimistic and really am not good at meeting people. I did start talking to a few moms this week and introduced Piper to the Aicardi community. We will be attending the conference in July and I figured this was a good time to start meeting other people.
In just a few days I have already talked with parents who have experiences so similar is it almost scary. I am not used to having anyone truly understand what I am talking about and it has been really nice to share stories and concerns. I can tell this will be beneficial to have support and be able to support others.
On the other hand, it has been extremely emotional and overwhelming. In just a few short months three sweet Aicardi girls have passed, one did just this morning from an infection her body just couldn't fight. My heart is ripped to pieces for this family. Although we have never met, I feel connected. I cannot imagine the pain they are experiencing right now. These girls are such precious gifts and struggle so much. It breaks my heart. I have cried all morning thinking about these people. I know that life is precious and we have no idea what the future is for any of us but it just seems so unfair for these girls and their families. I have just sat here staring at Piper thanking God for the months we have had with her so far.
When things like this happen its a smack in the face and quickly reminds me of what is important in life. It angers me at how quick I am to complain over things that are ridiculous. I woke up this morning in a bad mood over something petty and should have been thankful instead. Being Piper's mom has made me full of joy, hope and love but also fear, sadness and worry.
Please pray for this family, our family and all the other families struggling to be strong parents of such precious girls.