18 years ago today

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The tears streamed down my face. There were 2 lines on the white plastic test stick I held in my hand. I was pregnant. The tears were of sheer joy, but after 4 miscarriages, they were also tears of recognition that this could end in heartbreak.

18 years later, I now look back knowing that, on that joyous day, I had no idea what kind of journey and heartbreak could…would…lie ahead of me.

The pregnancy was rough at times, getting ill during the first trimester with what the doctor said was bronchitis, but with each ultrasound and each hearing of his little heart beating at speed, I grew more at ease that this time I would become a mother. And so I did. On the first day of October, my perfectly healthy son, who I called Brendan Bjorn, was born. 7 pound and 11 ounces, he was a dream come true.

He failed his new born hearing screening in one ear before we even left the hospital, but it was written off to likely being water in his ear. Subsequent testing showed it was in fact sensorineural hearing loss and it was profound. He was deaf in one ear. I remember being devastated that my beautiful baby boy, just 2 weeks old, was found to be deaf in one ear.

If only that was the extent of it.

At the 2 week well-baby check up, the paediatrician found that Brendan Bjorn’s head was in the 10th percentile. The rest of his body was in the 90th to 95th percentile. A big difference. That was the day I first heard the words microcephaly and cytomegalovirus (CMV). He had microcephaly (small brain/head), I was told, and in conjunction with sensorineural hearing loss, it could be one of four things that caused these issues. This is when I first heard about CMV.

Tests were ordered.
Blood drawn.
Urine samples taken.
It was the beginning of him being poked and tested and made to cry out in pain.

The bronchitis I had in the first trimester was likely a CMV infection. I was working as a Child and Family Therapist at the time in a public mental health clinic. I spent all day, everyday, working closely with children as young as 3 years of age. We even used the same toilet. CMV, a very common virus for which there is no vaccine, is most often contracted by pregnant women via young children.

I didn’t know. No one warned me about this virus…this insidious virus which is one of the leading causes of childhood disability in the world. This virus which disables more children each year than does Down Syndrome or Spina Bifida or Foetal Alcohol Syndrome.

Yet, there it was at just one month old, a diagnosis of congenital (born with) CMV.
My perfectly healthy son was actually not perfectly healthy.

18 years to the day since I still had such wonderful dreams of a glorious life for my unborn child. The years that have followed have had some amazingly beautiful times, to be clear. But, to also be realistic, that poking and testing and pain that started for my son at just 2 weeks of age has continued to this very day. Right this moment he is laying in his specialised medical bed on a specialised medical mattress, two areas of skin bleeding with breakdown, intestines which are no longer tolerating absorption of his formula, and a body that is growing very, very tired.

So today is a bittersweet day for me. My emotions in remembering that moment holding the pregnancy test stick bring tears to my eyes. But they are different tears than those I cried that day. Yes…very different tears indeed.

When a new year starts and the tree comes down

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I finally took our Christmas tree down today, later then I think I’ve ever left it. But alas, it is down and the empty spot is quite noticeable on the sitting room floor. If I look up from that empty spot, though, I see what keeps me going. I see my centre. I see my family. Photos from the past 18 years cover the one sitting room wall.

Photos of good times only.

The photos of the bad times are emblazoned in the ever-saving “cloud” of my mind.

While I took the Christmas tree down, I was stopped twice by the sounds of Brendan Bjorn gagging, retching and eventually vomiting. (remember I wrote last year that this year I would describe the real and raw aspects of our journey?) He started on a new medication a few days ago to try and help his intestinal system work better and allow me to try and increase his feed volume and rate per hour.

This isn’t going to work.
The medication is making him worse.

I spoke to a paediatrician last week. This was the last medication attempt to see if it is a gut motility issue. We didn’t think it was. And now, I definitely don’t think it is. It looks like it is a gut absorption issue, and with that likely inevitable diagnosis comes a huge discussion to be had with his medical and disability care service team: What are the options now?

And once I have those options in front of me, with all the relevant facts, I will go away and contemplate everything...and I will then decide what to do, or not to do, as the case may turn out to be.

So you see, dear reader, it weighs immeasurably heavy on my mind, my soul, my heart, that this year as I take down our Christmas tree, may have been Brendan Bjorn’s last Christmas with us. Yes, I know it may not be, either, and I’ve wondered this same question the past few years. But this year, it feels different. It feels very different indeed. And despite the self-protective numbness guarding my emotions as of late, I can still sense the devastating heartbreak waiting for that guard to drop its precarious defences.

I think I’ll add a few more photos to the sitting room wall this week.