Often times when Ella has her meltdowns or is feeling some type of way, I will hold her, rub her hair, and sing, “You are my Sunshine”. It doesn’t always make her stop crying, but it does calm her down. This has been something I have done since the day she was born, and it has stayed with us.
The other night I was feeling sad, and on the verge of my very own meltdown. On the rare occasion when this happens, after the two other kiddos are settled, I go into Ella’s room to spend time with her. I tell her what’s on my mind, we hold hands, we laugh, and sometimes I cry. It doesn’t matter my mood. Ella is always there to listen, and in her own amazing way does something magnificent to make me feel better. This particular night, she took her soft little hand and rubbed my face over and over again. She was letting me know that everything was going to be okay. That small gesture was just enough to carry me through the week.
I got a call yesterday from a woman who was completing an evaluation on Jack, that almost put me right over the edge. She needed some background information on the siblings who lived in the household with him. We talked about CJ and then Ella. I simply told her Ella was non verbal, non mobile, and had multiple developmental delays. She immediately came at me with rapid fire questions. “What is her diagnosis? Where does she go to school? Have you seen any specialists?”
When I told her there was no diagnosis, she inquired further. “What do you mean there is diagnosis? She is not walking or talking ? Someone has to be able to tell you what is wrong with her”. She further went on to say that it didn’t make any sense to her that we didn’t have more answers. She was relentless. Each time I answered a question, she had twelve more. She just kept saying, “There has to be a diagnosis. Based on her symptoms, I find it hard to believe that you can’t find one”.
Finally I shut her down and stopped answering her questions. She clearly wasn’t getting it, and didn’t need to know all the complex details in Ella’s medical history. I had already given her way too much information. Before the conversation ended, she shared her opinions on what she thought might be wrong with Ella. Enough was enough. I was done.
I hung up the phone and called Steve on fire. This lady definitely pissed me off, but the truth is we often get random people in our lives who meet Ella for the first time, or hear her story, and suddenly think they are medical professionals. They are forever putting their two cents in, and ALWAYS seem to know someone “just like” Ella. Funny thing is, I haven’t met anyone who checks all the same boxes as her in five plus years.
Ella is medically complex and to diagnosis her under the umbrella of one disability, knowing what we know now, is incredibly difficult. We have been told by multiple doctors that for now, we should treat each deficit as it’s own and continue to search for a diagnosis. Even with that, so many people have said it won’t change anything we are doing. It will just put a name to what is going on, and finally give us some answers.
Raising a child with a disability has you constantly questioning and wondering if you are doing enough. You don’t need other people doing the same. What I do know for certain is that Ella is so incredibly loved, and has two parents who won’t stop fighting for answers and making sure her life is the best it can possibly be. I refuse to let anyone else make me think otherwise, but that doesn’t mean it won’t continue to piss me off!
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