Come join me for a stroll through Maggie’s World. Along the way you will meet a lovely young lady who’s smile is contagious, and whose mother’s words will touch your heart.
Tell me a little about yourself and your family.
My name is Sally and I live in the San Francisco Bay Area. My two sons are both off to college so the household is generally just my husband and I and our youngest child Maggie who is almost 15.
Tell me more about Maggie’s disabilities.
Maggie has severe disabilities and ongoing medical issues. She needs total care, which she gets from us and from the nurses we have in the house to care for her. We knew nothing of her conditions before she was born and like every other parent, we were devastated when she was not a typical baby. Maggie was born with VACTER association, which is an acronym for all the anomalies in the way her body developed. Connections were either not there or in the wrong place.
Maggie needed numerous surgeries to correct her anomalies, but that was only the beginning. The extensive problems revealed themselves slowly and in some cases became worse instead of better.
At six months of age, she developed hydrocephalus, another condition requiring numerous surgeries. Now she has had over 70 major surgeries. At a year, she was diagnosed with cerebral palsy, which was not a surprise. She cannot walk talk sit or stand. Today Maggie uses a wheelchair; she eats through a gastrostomy tube, breathes through a tracheostomy, needs constant suctioning and has to be catheterized. These are all permanent conditions.
Despite being non-verbal, Maggie communicates very well, using her communication device, her facial expressions and clear signs for yes and no. Most importantly, she is the HAPPIEST child on the face of the earth. She tells jokes and laughs harder than anyone else does every single time.
How did you go about making the decision to blog about Maggie? What do you personally get out of blogging?
I started the blog Maggie World in August 2008. Would anyone really be interested? It turned out that the writing was very cathartic for me. I stopped writing for others and just wrote for myself. It became an enjoyable way to pass some time and organize my thoughts.
What is a typical day like for you and your family?
There is no typical day for my family, and yet every day runs together. I wrote an entry about the morning routine on September 11, 2008 entitled “Morning Has Broken” . That was four months ago and nothing has changed. Nor will it. Maggie needs something done every minute of every day, but she laughs through it all.
How have Maggie’s disabilities affected or changed me? In every way imaginable. My career as an attorney effectively came to an end, which resulted in financial issues. We have been unable to do things as a family because of Maggie’s needs and limitations. However, we have enjoyed ourselves and have learned to relish the small things in life.
There is not a lot I would do differently, unless I could erase everything I have learned and have a healthy typical child. Ignorance truly is bliss. But guess what, bliss comes in all forms. Knowledge is bliss too.
What would you like to tell other parents?
Parents: trust your instincts. You are probably right. Accept help wherever you can find it and do it with grace. But don’t worry about taking care of other well meaning, but burdensome folk who want to help but just can’t. You have enough to do. They can take care of themselves. Also, find other parents to keep from feeling too isolated. It is one thing to receive instructions on trach care in the hospital and another to learn the tips and tricks from a mom who has been walking the walk and talking the talk every single day.
Other things I want to share: My life is different from yours and my daughter’s life is different from anybody else’s. Different does not mean worse, it just means different.
Embrace the differences.
To enjoy more of Sally’s wisdom and more of Maggie’s smile, be sure to visit Maggie World!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.