I remember this day like it was yesterday. A couple of weeks prior I had felt in my gut something was wrong with Camden. That something wasn't right about his movements. I took him to three doctors. I watched him lose consciousness in my arms and finally someone took us semi seriously. This lapse in consciousness would eventually get labeled as his "myoclonic episodes" by the time he was 8 months old. We weren't there yet.
The picture is of his EEG following up after having bloodwork and CT scans done.
I was told to bring Camden over tired and hungry. He cried on the way to the appointment because I had to keep waking him up in the car (30 minute drive) to ensure he would sleep during the appointment.
I share this, not because it was traumatic and we need to remind everyone, but because it stands out as a learning point for me as a mom. As I changed him in front of the two people who would be monitoring his EEG it was the first time I remember feeling really, really judged on my ability to be a mom to Camden. Camden was screaming--cold, tired, and hungry. They made comments about how he didn't even want his own mom touching him. They clearly weren't used to doing EEG's on someone so young, expecting my baby to lay there and smile while they drew on his head with a wax pencil. (Most pediatric offices use a marker btw--less painful and scary for a child because you don't have to push so hard).
This wasn't the last time I would be judged for things I felt about Camden.
When Camden went to children's after having back to back episodes so fast that his head was banging into things and his eyes were rolling, and he was completely unaware, I remember standing there holding my baby and the nurse asked me if I was old enough to be a mom. (She thought I was 18, but still).
I remember bringing him home from children's and watching his episodes and calling the doctor and crying to the receptionist to please find someone who would do an MRI. It was the last test they hadn't done.
I remember the doctor who called back acted like I was nuts and that there was just no need for an MRI.
I remember taking Camden in to be evaluated for his delay and being told I was crazy--that he was totally fine. Then he qualified as delayed and received therapy.
I remember the look the nurse gave me during Camden's swallow study when he was positive nothing would make Camden drink the barium and he wanted him to tube him and I said no. He told me Camden's own bottle wouldn't work. It did.
I remember telling Camden's GI that his myoclonus was back and he was complaining of head pain and her writing it off as if it just couldn't be related to his vomiting. I left that appointment knowing I wouldn't be going back, and in a few days we were in with a neurologist.
And I remember finally, finally, that neurologist did an MRI. And sure enough it finally answered every question I had been asking.
The funny thing is I don't feel bitter or angry about all the judgement and resistance I received. I also don't claim to have known all along that Camden would have a chiari or what would come from everything.
But at that EEG back in Idaho where I was treated like a young over stressed first-time-mom, I was being prepared to make the decisions I had to make regarding Camden's chiari.
It allowed me to be comfortable with a surgeon telling me there is no for sure course for this disease, and that I would have to decide how to manage it.
It allowed me to feel confident enough to push for things regardless of the look I received from the doctor or mom on the other end of the room.
It's allowed me to ignore all the looks the nurses give me as Camden screams before they even touch him--they don't know all he's been through and I would rather them judge me as the mom than him anyways.
I know I am a young, and probably somewhat crazy, first time mom. The Doctors aren't wrong.
I still cry on nurses and doctors and get nervous about making decisions. When I went into pre-term labor and the contractions came back that night and the nurse couldn't get them to stop--I cried. I imagined this little nicu baby along with my traumatized toddler who wasn't even a month post-op who can't step foot in a doctors office or anything that looks remotely similar without a meltdown. I couldn't possibly be near them both and give my all to both. I told her she had to get the contractions to stop, that she had to get me home. She looked at me like she wanted to say, "your life sounds terrible" lol.
Just this past week I found myself again home alone and left to make a call. Camden started screaming in the middle of falling asleep and I ran upstairs to find his incision swelling, a big no-no post op. I couldn't get ahold of anyone, so naturally I took a picture and sent it to my family asking them to confirm they too saw the swelling and I wasn't nuts. Ultimately, I had to make the call. Do I wait, do we go in now, do I call? I was frustrated to be in this position again. Ready to have a break from the dramatic scary life. So I cried for about 30 seconds and then I told myself to move on.
I called, luckily they had me email the picture to them. Based on Camden's behavior and images post-op they didn't feel it was a leak, though it was still a possibility. During the surgey some spinal fluid can spill over into the surgical site. Most bodies process it and reabsorb it but they said from time to time they see kids where it sits and then comes up to the surface and has to break apart in pieces over time. They warned me it would be painful for him beacause of the swelling in the incision, but that if it didn't continue to grow there was nothing to worrry about. So I spent the next few days up with a crying baby at night because he was in pain, and watching, begging the buldge to not grow. Luckily, as of yesterday it appears to be shrinking and he seems to not be as bothered by it. I was reminded by this situtation though that there will still be times where I have to buck up and make the call. To decide things without the ability to know.
Though I would like at least one solid month to go by where I don't have to wonder if my child is deathly ill. [:
There is one phrase that has carried me through Camden's whole life and has comforted me when I don't know what to do. I hear it in my head all the time. A single sentence that has come up in times of prayer, in times of emotion, and in times of desperation.
There is someone who knows.
When I didn't know how to find answers for Camden, when I needed to make decisions for him that I couldn't base off any evidence because he couldn't talk, I've always known there IS someone who knows.
When I couldn't ask him what symptoms he was experiencing and a Doctor couldn't tell me what all would come of his diagnosis, there was always someone who knew. Someone who knew and could help me make the decisions.
Every single time I have had a moment of panic where the tears come and I feel lost I hear those words.
I remember Garth and I talking and Garth had his moment of fear. (We've both had many).
He said he couldn't make a deicions because he didn't know what Camden was feeling, didn't know what would come if we didn't do surgery. That we couldn't know what surgery would cause, what complications Camden would experience. That there was no way of knowing anything.
I remember the words coming to my head almost like they were being yelled, "There is someone who knows all of that."
I STILL don't know, but he does.
Camden has grown from this totally helpless, dependent baby, to this awesome independent little boy. He has helped me go from a clueless terrified young mom to a more confident but still sometimes clueless slightly older mom [; .
I have taken care of him, and he has taken care of me. His smiles, his joy for life, and his love for me has carried me through it all. Just yesterday I was feeling especially tired and sore from all the contractions and I began to drift to sleep on the couch. My little two year old said "go night night!", grabbed his dusty crop hopper blanket, put it on me, and stood by me and drove his cars around the couch and occasionally across my baby bump. He gave me almost an hour nap! I love how someone so small can be what I need. Camden is definitely my hero in so many ways.
It's funny how little moments in life prepare us for the bigger trials. I'm grateful for the opportunity to reflect and to see how far we've come.
In my reflecting though I can't help but hope baby girl is a little less of a medical mystery to all of us [:
