Avleigh's Journey

I’ve been a special needs mom for the last 6 years. Six years of waking up throughout the nights, early mornings, diaper changes, feedings, vomit, moving her sweet little body from one spot to another just to keep her satisfied, constantly checking up on her to make sure she’s was ok, she was not choking, she was still alive… what do you do once that ends so suddenly? How do you fill the emptiness not only in your days but in your heart?

I know everyone grieves differently. I can see it just amongst our little family. Alyssa has just been so amazing. I’m very proud of her and happy that we taught her about god and heaven at such a young age. She will speak of and talk to Avleigh every single day. But it’s with happiness and fun. She knows she’s in heaven with Jesus and all the angels… with her maw maw, paw, poppa, granny and Elvis! She talks about how she’s dancing and playing and how happy she is. She so proud to have been Avleigh’s big sister; you can see it in her eyes when she speaks about her. Jacob is definitely the strong one, probably holding it together for me. He’s so supportive and there when I need his shoulder.

I truly believe we are very lucky. Not only to have Avleigh in our lives, but to have experienced her life through all the ups and downs. I’m not going to sugar coat it. Her life had many of those ups and downs, but those last few days were horrid. I’m sure you all could imagine when I asked for the hardest prayer a mother could ever ask for… everlasting peace. We could sit here and ask why… why us, why HER. The truth is that we feel that it was a lesson for us all. Her life brought us so much joy. That is why we feel so much emptiness in our hearts. She was our sparkle, our light. Us seeing her suffer for that time we believe was preparation for us to accept her ascendence into heaven. We have that acceptance because we couldn’t bear another moment of watching her live without quality. Although it is the worse feeling I think I will ever experience, I know she is finally at peace.

This COVID pandemic was a blessing for our family. It gave us what is the most precious thing… time. Time together as a family and undefined attention to Avleigh. It gave us time alone to deal with our sorrows privately. We had a private blessing of her ashes in our own home with immediate family where the ceremony was personal and absolutely beautiful. Our faith, hope and love as a family will get us through the sad, happy and all the new “firsts” that we are yet to experience. We’ve had lots of support from everyone. One thing that really stuck with us is the comment from our palliative care team, “It’s ok to be ok.” I miss my sweet baby so very much and I wish she could be here. I would give anything for her to be here. But until we meet again, I need to begin to learn how to live without her. I need to be the mommy that Alyssa needs and the wife that Jacob deserves.

Dance away my sweet angel, we love you and are so proud of you!