Sean and Nikki McMahon
Web Developer and Freelance Web Designer
Age of parents:
Age: 8 Years
Is this your only child?
Diagnosis of child:
Sacral agenesis refers to a condition in which the sacrum (the lowest portion of the spine that forms the joint with the hips) fails to form (agenesis) during fetal development.
Spina Bifida OSD – Occult Spinal Dysraphism
This basically means that the spinal cord is tethered (stuck) and has a Lipoma (fatty growth) and Syrinx (fluid filled cavity within the cord). She has recently had an operation to de-tether the cord and remove most of the Lipoma.
What are the biggest challenges facing your child on a daily basis?
She is bladder and bowel incontinent and so requires catheterisation and enemas daily. Both of which she does not like. She is also desperate to be out of nappies and due to speech and cognitive delays it is very hard to help her understand and come to terms with her needs.
What are the happiest moments you have with your child on a daily basis
She is a wild and wonderful child with so much love in her. My favourite part of the day is when she sees me after I’ve been out or in my office working. The sweet joy and all the hugs and kisses melts my heart.
Are you married?
Has your special needs child had an effect on your marriage?
Yes. Both good and bad. She is our third child and I do sometimes wonder if the difficulties are more from the pressure of being outnumbered and the constancy of needs to be fulfilled, and the lack of down time. When it comes to Juno’s conditions, we’ve found this has brought us closer together. For each of us, the only other person who truly understands how all of this feels is each other.
Are your family and friends supportive?
Yes. Our family and some very good friends have provided a lot of emotional and practical support. We’ve also bonded with other special needs parents which has helped so much.
What has your child taught you about yourself, both positively and negatively?
She has taught me that I am stronger than I think. I’ve also found I am a lot more organised and able to deal with admin (from all of the medical aid, doctors, receptionists, hospitals etc) quite effectively.
That I can’t be the parent I’d like to be for all three of my kids and that I don’t have the tools to properly help Juno’s brothers deal with their own issues surrounding this and their needs – both boys have tourettes and ADD. I’ve always liked to think I am on top of things, but with this I am at a loss and I simply don’t have the time or energy to manage all of it as I’d like to.
Do you take time out, if so what do you do to relax?
Yes. Sean and I go to the movies at least once a month together and we’ve each got interests outside of family life that we still try to pursue.
What has made the biggest difference to your child’s quality of life?
Having older brothers. She is so keen to be a ‘big boy’ that she has overcome so many physical hurdles with pure determination to achieve this goal. And the boys don’t treat her like she is any different from them. This means that she is walking, running and jumping. She also climbs the jungle gym, and everything else vaguely climbable, and does incredibly well, physically, for her conditions, even if she’s not as sturdy or fast as other kids her age.
And then there is speech therapy. It has helped more than I could have imagined and she just loves to communicate.
What is your dream for your child?
Independence. We want so much for her to be able to take care of herself one day. Even though she is very mobile now, her doctors say that she will deteriorate as a teen and most likely be in a wheelchair as an adult – due to severe hyper-extension of her joints. With her speech and cognitive delays, our greatest push is to get her able to understand how to take care of her medical needs and to be able to live independently later on in life. Of course, if this doesn’t happen, we will continue to care for her ourselves until it is no longer possible.