We are home from Cleveland. We actually got home on Saturday. We had a drive home that was un-eventful for Ryan and very sniffly and angry for Micah and me. We stopped at our favorite haunts, ate too much junk food and talked a bit.
I didn’t want to talk. I still don’t, but we had to process the trip. We both had to sit with it before we could share it. We had to fall apart and then get our tough shells back on, because once we share it, then the questions and phone calls will begin. All well intentioned and well meaning, but those conversations will make us deal with our news and live in our news, and I, more than Micah, am just not (even now) ready to talk about it.
We are dealing with it. We are caring for Ryan as instructed and talking to her Teachers and Therapists as we need to, but to be honest I haven’t spoke out loud to anyone yet. Even those who I know love me the most.
I have been accused of making all of this about me, of becoming a shell of my former self, of relishing being a pity party and that haunts me as well. When you share your life, some people feel free to be really mean and judge you and quite honestly these cruelties, veiled in concern have affected me more than I would like and so I am afraid to share, because in the scheme of things that we have been through the news isn’t that bad. The bad is that it is more fucking bad news and I am so exhausted from getting bad news and being afraid all of the time. I am tired of having to be strong. I don’t need pills or a Doctor to help me with this
I need the bad news to stop and I need to embrace my child who has a feeding tube, asthma, Autism, crucial parts of her brain missing, who is non-verbal and globally (which means a ton a ton a ton) delayed. That was enough, more than enough and I accepted it. I just want her to be a fucking grocery store bagger one day, and now that may not be possible and I can’t bear it.
I don’t need to know that her new EEG is showing that her brain is spiking as she sleeps. That these spikes are seizure pre-cursors and will require more meds, not less. I don’t need to hear that the spikes aren’t letting her rest enough and aren’t allowing her development to increase. I don’t need to have to go back to Cleveland for monitoring again this summer and follow up with blood tests (due to increased meds) in between. I don’t need any of it. I need enough to finally for once and for all be enough, because our enough is more than enough and more than most people will ever have to go through with their kids at all, and she is only 4.5 years old.
I don’t need the judgements, or the faces, I don’t need the I’m sorry’s. I need the bad news to end and for now, I need privacy and latitude and an embrace, not platitudes and words regarding Ryan’s warrior status or ours. Despite what some trolls have said, I don’t want all of this attention, I want none of this to be happening, I want our lives to be so typical and so boring, that no one pays much attention.
I have always shared and over shared so I felt obligated to do so here, because I know that we are loved by so many, but even that makes me cry as I feel the weight of all of your disappointment for our family and I feel like we have let you down. That you are mad at me for not seeing a problem, for not knowing, for not being able to fix it
Her chances of remaining seizure free are not as good as they were before. Her ABA therapy schedule is being doubled and I am just trying to be her Mommy and make sure that she is now and remains the happy easy going girl that she is, because she is what is going to get me through this