It’s easy to have opinions on respite – especially if you don’t use a respite service.
We have been using a respite service since baby D was six months old. We had been trying to use a respite service since 2010. Just to put that into perspective for you all, that’s a little over five years of begging for some respite, any respite.
Finally we were deemed suitable when baby D arrived and I had an emergency C-section. I was physically unable to care for Ethan. D did his best, but D is also in full-time education.
I cried the first time we went to the respite centre. What kind of mammy needs respite from her child? The guilt sent daggers into my heart as we entered the centre.
I had wanted respite. I fought to get it. Yet here I was crying about needing respite.
If you’ve never visited a respite centre, it’s hard to explain the feeling you get when you walk in. There were children running freely up and down the brightly painted corridor. There were adults running with them laughing while other adults were busy getting toys out, I imagine, in anticipation for the next adventure. I smiled.
The staff had been given a course to help them understand Ethan. They were also educated on Hunter Syndrome, as they had never had a child in their care with the syndrome. They felt they needed to understand Hunter Syndrome in order to understand Ethan’s needs a bit better. This impressed us.
Ethan ran off. I attempted to follow, but a gentle hand reminded me not to. I could hear him singing ‘I blove you’ while we had a cup of tea and a chat with the centres’ manager. We left Ethan there for a whole three hours before returning to collect him. During that three hours, we played with J and baby D. The guilt was still there, stabbing at me. What if Ethan hates it? What if they’re mean to him? What if he thinks I don’t love him?
We returned after three hours. If Ethan doesn’t like something or someone, he will let his feelings be known- “Go home” is never far from his lips if he doesn’t like where he is. We hear this a lot pulling into Temple Street (Hospital). “No, not you”, while we tell people he doesn’t mean anything by it. That’s a lie, for their sake.
We were buzzed in. Ethan came running around the corner, I stupidly bent down waiting for a huge hug, but he stood back, holding his new found friends’ hand (which brought a tear to my eye) “No mom. Fug off” . I laughed as I felt the guilt melt away. My boy was happy.
Ethan gets respite twice every six weeks. He stays in ‘big house’, as he calls it, one night with each visit. We get to spend that time with J and baby D doing things Ethan finds difficult, like grocery shopping. We even get to go to the cinema,(babysitters willing) as a couple.
Respite is vital for our family. While I don’t like needing it, I am happy we have it.
Ethan is going to ‘big house’ on Sunday. D has surprised me with a trip to a vintage fair in Dublin and I’m learning it’s okay to accept the help and take a rest… the guilt is becoming easier to ignore.
I am Ger, wife to D and a mom to three boys. I am their world while these four men are mine. We are trying to learn how to laugh again after our eldest son Ethan was diagnosed with Hunter Syndrome. This is a blog about living, laughing and learning.
We are thrilled to have Ger on board as our Guest Blogger this week, for more of her beautiful words, follow her blog: geraldinerenton.com or read yesterday’s post on Hunter Syndrome.