I am sitting today on the deck with Mom and Gregg. It’s a day I’ve looked forward to for a long time. It’s my 26th birthday! I asked to share this day with Mom and Gregg. I have had many parades in my life. On many of my birthdays, I was not feeling good. I have had a rough start today because I cannot stop chewing and hyperventilating so even typing is hard. Both my Mom and I are weary.
It’s been a quiet week, so I’ve had many hours to think. I know that I am very fortunate because even though I have Rett Syndrome, I am able to communicate and I have had many great things happen in my life. I realize that even though my life has been challenging and at times I wished that I could die, I have given others a view they probably wouldn’t have without my story. That gives me comfort today. I know that without my ability to communicate, many families and girls with Rett Syndrome would not be seen as young girls who lost something they couldn’t help.
I am eager to say that I feel like God has given me the gift of communication because my life is suppose to be more open to others. If I didn’t have it and I didn’t have family who believe in me and give me opportunities to share my story and my vision and my life, I would be so sad today. But inside even though I am struggling today, I feel much gratitude and I feel like it’s been a life worth living. I understand how hard it is to live with Rett Syndrome. My Mom and family do too. I think my Mom would say today, it’s more than she wants to handle!
Today, we would just like to celebrate, so we are going to the lake. I have asked for a picnic and a chance to be in the water. No parade today. Sometimes the noise is too loud for me and I don’t enjoy it, so today we are going to be by ourselves.
I hope everyone has a great day today, and for those of you who are struggling and suffering from illnesses and disorders you never expected to have in your life, I send you a prayer for peace, because it’s not an easy life. But I know that when I get through this life I will understand some things that I cannot while I am still alive. I know that I am loved by many today and that God loves me even more, so I feel content and my heart is glad for my days.
I know that many of you have written to me and I haven’t felt up to responding yet, but I have many answers on my blogpage so I hope you continue to read what I have written over the past three years.