When I started my first blog in 2008 it was to share my life as a mom to four amazing girls. My third daughter Livvy, had a neurological disorder called Rett Syndrome. I wanted to share how life with a child with disabilities was hard but also one full of joy. Well as the irony of life is that joy quickly turned to sadness when I lost my beautiful girl to a rare virus that happened due to her disorder and my heart was broken into pieces. It was then I was ready to close down my online space and disappear into the pain of my grief but I was encouraged to share my heart, to share my pain in hope that maybe it would make others facing the same thing feel less alone. This is what I did and I have many moments that I’m so grateful that that’s what I chose to do.
Over the last 6 years the story of my life on these pages was changing, yes I was still grieving for Olivia but through the presence of a special handsome little boy my life began to fill with joy, with laughter and with hope once again. Daniel entered my life, an emergency weekend placement that became my forever son. My beautiful, beautiful boy. Yes he had his mega list of complexities but more than that he had a smile that blessed my heart and a cuddle that made me feel whole again.
Yet I didn’t get to feel whole for long because on my 46th birthday my heart was tore to pieces once again. On the 27th April 2022 Daniel went home to Jesus. The virus known as Covid 19 claimed another life., it stole my beautiful boy.
I have no idea what to do now, my purpose has gone. When Livvy died her sisters were so much younger they needed me. This time they are adults and in fact I really need them. You see I’m lost, I’m hurting and in all honesty I am broken. I have no idea or desire to do this life without Daniel. Through the Grace of God I survived losing Livvy but right now I have no idea how to survive this pain.
Daniel needed me in a way that allowed me to be free. To allow my heart to live its destiny of loving hard. Daniel taught me how to use my voice and to advocate for him and all children with disabilities. To not hide any more but to shine in loving him.
My light isn’t shining now. I am so very lost. Do I return back to these pages and share my heart once more or have the words already been said.
Will the story read too familiar?
I have no idea, I really don’t. How do you journal the lost of another child? Do I really or should I really put words to the devastation I feel? Will putting them out there for others to see blow back at me. I do not know.
All I know right now is that I’m so very lost, I don’t know my purpose anymore and my heart, well it’s forever broken.
I miss my gorgeous girlie.
I miss my beautiful boy.
This life is too hard.
3 thoughts on “It’s to hard”
I have been reading your blog for a long long while now. It/ you have honestly helped me get through a lot of rough times by reading your blogs. I am a mom to a little girl with Rett. Her name is Taylor. She is now 7 years old. We live in Texas. We have been on our Rett Journey since she was 2.5 years old.
I just really wanted to reach out to you and tell you that I am so sorry for your loss. I also wanted to tell you to keep your head up. You are a wonderful person and an amazing mom; who has been through so much.
I know Daniel and Livvy are up there together now free and laughing and talking up a storm. I know my words won’t stop your pain but I just wanted you to know that everything is going to be ok and that you should not feel lost. You’ve gotta keep going and living life to the fullest. Not just for you but for your family. Now is the time to take care of you and your husband and your daughter’s. Celebrate the wonderful life of Daniel and how he is loved so much by you and your family. To me y’all are incredible to have had Your Livvy and then also to have had Daniel. They both had amazing lives because they were both so deeply loved you. Sending many prayers and well wishes to you and your family.
Thank you so much, as you probably can tell I’m struggling but I do have hope and today you reminded me of that hope. Xxx
It is beyond hard. No mother should lose a child–let alone two. I cannot even start to imagine. Allowing yourself to be vulnerable, and sharing your journey as you are, I’m sure will be an encouragement to many.