It has been three years since we said our “I do’s” and like everything with us, our journey to happily wedding bliss (depending on the day you ask!) was anything but “average.”
We literally do live with the motto of “Live, Laugh and Love” — all thanks to our Ethan and the road he has brought us on.
We don’t mind people forming opinions about us: People will do that whether we mind or not, so why bother being upset about it? We spend a lot of our time being upset, worrying over things we cannot change. Things that are just unfair. Things that no parent should ever have to face. We stare that in the face daily. So people have opinions about us — so what?
There is nothing truer than this: Those who mind don’t matter and those who matter don’t mind. (Dr. Seuss)
We wanted to get married for a few years, but with me being a carer and D just not earning enough, it seemed like an impossible dream. D knew I would never get married without having Ethan there. With the rate of us saving money compared to the cost of Ethan’s progressive condition, we knew deep down we would probably never have “our” day.
That was until D applied to… wait for it… Don’t Tell The Bride. Yes, the TV show.
I can already hear the chorus of voices saying, “I’d never ever do that!” Well, it was never in my wedding day plans either, but when you have a terminally ill child, your views, opinions and hopes change.
I just wanted my son to be with me on my wedding day.
The title of the show gives it away: I didn’t know anything about our wedding day until the day of our wedding – 7th November 2012. It was magical and, thanks to a TV show, we had our wedding with all of our little family beside us.
The eight years before we said our “I do’s” are the years that shaped us as a family. They are the years that cemented us together.
We sat in many doctor’s offices, begging them to listen to us when we said: “There is something going on with our son, Ethan.” Each and every doctor we saw for exactly five years told us the same thing. “He’ll grow out of it. Children meet milestones at all different ages really. Geraldine is an over-anxious mother. D talk to her, she’s seeing things that are not there. It’s a cold, some kids find it hard to shake off a cold: my own had a constant cold for months last winter. Did you breastfeed Ethan, Geraldine? Ahhh see now? Bottle-fed babies tend to get sicker more often…” These are only some of the comments made to me and about me.
After each visit, D would hold my hand and tell me: “A mother knows, Ger. We’ll get to the bottom of this, promise.” To have someone stand with you and believe in you when doctors are telling you that you’re wrong; well, there’s no comfort like that. We traveled a long road to get Ethan a diagnosis, and D was beside me each and every step of the way.
- Global developmental delay
- Sensory processing disorder
- A heart murmur; a valve not behaving itself
- Hearing impairment
- Mobility issues
Finally, in 2008, all these symptoms added up to Hunter Syndrome: a life-limiting condition for which there is no cure. Now doctors said “Go home and love him. You won’t have him for a long time. We are so sorry.”
Together, D and I went through friends deaths, a house fire that left us with nothing (we were very lucky and stayed with D’s parents until we found our feet again) and then Ethan’s diagnosis. Life seemed to be playing a cruel prank on us.
I remember talking with D for hours, late into the night, offering him a “get out of jail free card” after Ethan’s diagnosis. I genuinely felt that he really could leave as he owed me nothing. Asking him to face this with me seemed selfish on my part. I could see the pain on his face before he ever opened his mouth. I had caused the man who had been on this journey with me for years more pain than I ever could have imagined, just by saying something I thought I should say.
I tried to take it back, but he looked right at me and said: “I’ve been Ethan’s dad since I met you, pretty much. He was just 18 months old when I first laid my eyes on him; he is now 6. Do you think I would really leave? Do you?” I looked at the ground and gestured “no” as he continued. “I love our family. You don’t need to say things like that to me. You don’t. I’m your partner and a daddy to my two little boys. One day we will get married and do all that jazz, but now–” He reached out for my hand. “Know I am always in your corner… unless you give out about Star Wars,” he laughed. “Ya silly woman!”
That was the moment I knew I had something great in my life and that I always would. My (now) husband: my D, my partner, my buddy and the one who always makes me laugh.
And so, seven years later, we are here. Ethan is 13, J is 10 and the toddler is 2.
D will always give me a break once he gets home from college. I don’t have to ask.
D will insist I make a date with a friend so I can have a few hours to myself over the weekend.
And when Ethan has a meltdown in a public setting… Well, watching D deal with Ethan is so heartwarming, it still catches in my throat when I witness D’s approach and how quickly Ethan responds to him.
I have rarely had to leave a family gathering due to Ethan’s sensory issues. D is the one that leaves, reminding me to relax while he brings the three boys home so I can fully engage with our families.
Yes, D has his faults. Star Wars, for example!
Yes, we argue. Yes, we take our stress out on each other. And yes, we do not have a perfect marriage. But there is no one else that walks this earth who I would rather argue with.
We know we are both lucky and we know we are both in this together. No matter what, we will always have each other.
To all you wonderful dads, partners, step-dads… You don’t get enough praise for all you do, you really don’t. Thank you for make the world a brighter place for us all. x
By Geraldine Renton
Read more from Geraldine by visiting her website and Facebook page. Geraldine began to write privately as therapy and recently began writing publicly about learning to live, love and laugh again since her son was diagnosed with Hunter Syndrome.
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