During MPS Awareness Week this year we heard from Robert and how he chased a diagnosis for his son Nathan. In the second installment of his story Robert shares the struggles of being a father and difficult emotions he's had to face.
I am Nathan's dad, Rob. Nathan has MPS IIIA, Sanfillipo. He’s 31 years old now and has been in residential care for almost five years, after my late wife and Nathan’s mum Jan, passed away.
Jan and I talked about it, we were set to have him live at home and we’d care for him as long as we were both able to. It was a very hard choice to make but in the early stages of Jan’s cancer, I knew I couldn’t look after both, as any parent of a child with MPS will know. I go to see Nathan as often as I can. Sometimes it’s heart-breaking wondering if he understands that his mum is gone.
Sometimes it’s heart-breaking wondering if he understands that his mum is gone.
A few times we’ve locked eyes and I have talked about his mum not being here anymore. I get emotional and looking into Nathan’s eyes I feel a connection, and he almost has tears in his eyes. Does he understand what I’m saying? One occasion we had amazing eye contact for what seemed like ages, I had to pull away as I didn’t want him to see me crying and couldn’t bear it if he had cried! Nathan never cried, only when he watched Lion King and Simba’s dad dies! Actually, that’s not true. Nathan did go through a tearful phase in his early 20’s, it could be at home or in the car and he would suddenly start sobbing, he would push us away if we hugged him.
There is always an endless array of stories and memories to look back on and talk about, which I am sure any family living with MPS has been through. The endless ear and throat infections, constant antibiotics, no sleeping. It's hard for any parent but especially so if you have other children. We found out how important it was to receive respite care for Nathan so we could shut off and relax, but also to have weekends away with our other son, Stephen.
It made such a difference to our lives when we found out about the MPS Society. One of the biggest reliefs was meeting lovely families who we could talk to without having to explain things! What an experience to go to a hotel and watch children throwing food everywhere, and no one batting an eyelid! It felt like the first time we could relax and chat with other parents, without scornful looks or unappreciated comments about how we should control our child.
Stephen never complained that he couldn’t go on holiday and never blamed Nathan for anything. He is an amazing son and I am so proud of him. He is a father himself now.
It always brings a warmth to my heart looking back at how much fun we had, despite the difficulties. Nathan didn’t understand what he was doing wrong, like snatching an ice cream out of another child’s hand and coming toward us eating it! There are endless stories to tell, the more I sit here and reminisce, and a lot I will have forgotten but to wrap up, remember, whatever emotions we feel, it's so important to talk about them without feeling judged and to give positive and encouraging words to other parents and siblings starting out on this journey.
We will always love our children and cherish the many adventures past, and yet to come.
For support in parenting a child with MPS or a related disease or any other information relating to this article contact the support team.