Lord love a duck.
Just when I was sure my morning could not possibly get more chaotic, the phone rang. The caller ID said Glenrose Hospital, which is where the doctors who perform the autism assessments work from. I tossed “hush-its” A.K.A. candy into my screaming kid’s faces and answered the phone in my very best “why yes I’m wearing pants and lipstick” voice. I don’t think I fooled anyone though.
Remember that EEG that we took Xander for? Remember how horrific the experience was? Well the great part of that is that we did such a good job preparing Xander for the experience that the tech got a solid 30 minutes of accurate readings of Xander’s beautiful brain. The not so great part is that during those 30 minutes there were some very abrupt spikes during the portion of the EEG when Xander was asleep. They can’t say for sure what they are yet, but they do want us back for another one. Abnormalities? Seizures? Something horrible and scary and broken with my baby’s brain?
Fuckity-fuck-fuck.
The other news is regarding our appointment for the autism assessment. Xander’s initial appointment was made for February 18th and 19th, but since somebody over looked the fact that one of those days is a holiday here, it got bumped to March 5th and 6th. The neuro Doc told me this morning that in the rush to reschedule us, somebody failed to notice that this appointment is with an entire different team. Since this particular neuro Doc has been very involved with us and has even come to our house to meet our little enigma, I’m quite attached to her. The earliest she could get us in to see her team is April 24th and 25th. I confirmed with Pat that it would be the right decision, and I called the Doc back and told her that we would rather stick with her and her team. This date will bring us to a total of 8 months since my son’s regression. EIGHT MONTHS!!
Fuckity-fuck-fuck.
I frantically called Patrick and told him the news. Xander is screaming in the background because he wanted to drink the pancake syrup. “Pat, the EEG came back. There’s something wrong with his brain.” Xander lets out a series of ear piercing screams and deep growls so loud that I can’t hear myself think. “Pat, we need to go back. We need another EEG done and he must be sleep deprived for this one. What the hell are we going to do?!” Xander is going back and forth between spinning in circles and banging his head on the fridge. “Pat? I can’t hear you! We need to rebook the assessment for late April, and I can’t hear you!!” Xander stops spinning long enough to stand at my feet and to shriek at the top of his lungs.
“Xander! Can you just be quiet for 5 God-damned seconds?!”
Silence. Then tears.
Yeah. I yelled at my special needs son. Parent of the year, right? Thank God for my Mom In-Law who heard me bellowing and came and rescued Xander with no judgement. I finished hashing out the details on the phone with Pat and went downstairs to apologize to Xander. I know he still loves me, but I feel like absolute crap. He counts on me to be one of the only people who will always be on his side no matter what, and I lost it on him.
I can feel the fear dragging me down. I am weary. I am scared. I am trying my best to keep everything from falling apart and keep a stupid smile on my face and I feel like I am failing.
Maybe I just need a break. Maybe I need to open my tired eyes just a little bit wider so I can see just how many things we have to be thankful for.
Maybe I will try that.
Maybe.
>
I know it’s hard to do, but try not to worry. You don’t know what to worry about yet and it will wear you down. Maybe what they found (and they don’t know yet) is something you are already dealing with.
I’m sure with everything you hear and what you go through, it makes you feel like you are being tested to no end. Thankfully, you two are as strong as you are.
Try to keep yourself in the positive till you are given a reason to do otherwise. Oh, and if you can get out once in awhile, child free, take advantage. A slight rejuvenation occasionally will help you cope as well.
Xander has probably forgotten all about your anger. Let it go, knowing that it is not you, but your frustration. You are a very good person and mom, and you can’t stand tall all the time.
Big hugs and all my love.
<3
oh honey. you are only human. i’m so glad you’re releasing some of this through writing. keep releasing it. don’t hold on to it. ::huge huge hugs::
Hi,
First, Xander will not hold it against you, I promise. I had a similar situation with my son after we attempted to do a soccer program with typical kids (before I really knew what was going on with him…not that I know now as we don’t have a diagnosis yet, either but at least now I know it’s SOMETHING). I felt so bad about yelling at him that day. But he got over it. He doesn’t remember it (but I do). Try to just let it go.
I’m sorry you have to wait even longer to find out what’s going on with your precious baby. I hope that you get the best news ever. And I know it’s impossible to NOT worry, but it’s actually true what they say – worrying doesn’t really help.
Thinking of you!
thinking of you all,hugs from moi,keep writing your blog ok!!!
Hugs Dawn! Please don’t beat yourself up. None of us can be patient every time.
Waiting, fear and worry wear down even the best. I’m glad I already read your later “taking care of yourself ” post. Ellen
Waiting, fear and worry wear down even the best. I’m glad I already read your later “taking care of yourself ” post. You deserve to be kind and forgiving to you.
Ellen