When Ariana was first born, and we learned that she had Down syndrome the word grief was thrown around a lot. I was expected as a new mother that just had a baby with Down syndrome to sob, and be angry. I felt like I was expected to be shocked, and ask “why me?”.
When Ariana was still in the NICU I received a Down syndrome pamphlet. On the very first page it said “dealing with grief” my first thought was “grief? How about “dealing with a baby in the NICU” pamphlet would be more helpful than this nonsense.” I was not in the mood for a pamphlet to tell me how to deal with losing something when I haven’t lost.
I remember rocking Ariana to sleep one night, it was another late night/early morning stay with her and I saw the pamphlet. I began to read.. And I began to sob.. I cried like I’ve never cried before. I just held my baby, and cried.
When your baby is born with Down syndrome everything you wanted, everything you expected, everything you had planned for them, everything you had wished, hoped, and prayed for vanish. EVERYTHING changes. You have to take new details into consideration when you’re planning what you expect, what you plan, even what you hope for.
I cried because I was scared, I felt robbed, and cheated. I cried because even the simplest things that I had wished for Ariana might not even be a possibility anymore. I was afraid because I didn’t know what to expect for Ariana’s future, for her health, even her life expectancy…
I cried because I was scared for my baby. I still am. I’m scared her ASD in her heart won’t close and she’ll need open heart surgery. I’m terrified that I will outlive my baby… And I am mortified at the thought of having to live my life without her.
I try to be strong, and I try not to grieve. Sometimes I watch videos of other kids with Down syndrome and I’ll notice that they can’t really speak, or communicate and I’ll start crying like a baby. I start to think “is that what’s in stores for Ariana?” “Will she be able to talk to me?” …. or I’ll read an article about an accomplishment, and I’ll cry because I’m proud and I pray one day Ariana will achieve something like that… or I’ll read a piece on a death of a little angel taken to soon and I’m literally crying waterfalls…
This is all new to me because I’ve never been a sensitive person, but now.. Right now I am. My heart is sore, and heavy. My soul feels like it’s been through the ringer, and my mind is going all the time non-stop. It’s filled with fears, and questions.
A lot might not understand, but if they take anything away from today’s blog take this… Ariana is the light of my life, she makes me uncontrollably happy and I honestly thank god he gave me the ultimate privilege of mothering this beautiful one of a kind child of mine. She is my heart, and she is my everything. My grieving doesn’t mean I love her any less. It doesn’t mean I can’t accept her. I’ve accepted her, and wanted her the second she took her very first breath on this earth. It’s just a process, and I’m processing through it as fast as I can.