Tell us about your family. If your child has multiple diagnosis, feel free to share them.
My husband, Gabe, is from Utah, and I am from England, and we met and fell in love 9 years ago here in beautiful Virginia! Avery, our little miracle, is our oldest child. She is five and a half, and she has 2 younger brothers, Brogan (3) and Oliver (1). Avery has hydrocephalus due to a cyst in the fourth ventricle (Dandy Walker), and as a result of the damage caused by her hydrocephalus, she also has spastic diplegic cerebral palsy, along with some mild vision problems.
Tell us about the moment you were told your child had hydrocephalus.
My NP had set up an ultrasound for my 35 week check up, which she later told me was because at my 33 week check up, my measurements seemed to be a little off. So we went happily along to our appointment, excited to get another look at our baby. It was going great, and even when the technician said "Hang on a second, I just want to check something from your 20 week scan" I didn't think anything of it - I was just so happy to be seeing our baby! It was only when she said, "Well, there is one thing..." that I realised something was wrong. She explained the baby's ventricles were enlarged and it looked like she had hydrocephalus. It was like listening to a different language! I'd never even heard of it before. This was a Thursday, and they set up an appointment for us to see the specialists on Monday. We spent the whole weekend researching, and I think I spent the whole weekend hoping that they were wrong. I still clung to the hope that we would go in for our appointment and they would say there was nothing wrong with our baby afterall!! But of course that didn't happen, and in that doctor's office on that Monday morning was the first time I ever saw my husband cry.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
Every moment of every day is affected!! We have been blessed that Avery has never yet had to have a shunt revision, but even today there is a worry in the back of my mind every time she gets sick with anything ..."Is it her shunt???" The daily struggles come from the cerebral palsy which the hydrocephalus created. Avery is a very intelligent and motivated little girl, and sometimes it seems like all I do every day is try to think of ways to make life less of a struggle for her - to make it easier for her to get up on her feet and walk! Most of our activities and games are planned with therapeutic needs in mind :)
Share a moment when you were frustrated or discouraged
I don't feel that way very often, and when I do, it's almost always because of health insurance!! When Avery's progress in traditional physical therapy had plateaued a couple of years ago, we started researching other options, and ever since then health insurance and medical costs have been the bane of my existence!!
Share a moment when you found joy or hope
Just one???!???!?!!! Gosh, Avery IS joy, so it's hard to narrow it down....! But I suppose I'll just tell you a recent one. Avery had SPML surgery on her ankles and hamstrings 3 weeks ago. The same day of her surgery, it was just a couple of hours after she woke up, she was sitting on the couch looking at her casted legs, and she wiggled her toes. That was practically impossible for her before surgery, and it was almost effortless for her immediately afterwards! The look on her face was beautiful :)
What do you do to keep your sanity? How do you take a break?
I blog. I read. I try to make time for regular dates with my husband :) I relish in my solo trips to the grocery store :) If I need to, I sit down and relax after my kids are in bed, even if there are still toys all over the floor!
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
You are probably seeing only the worst possible scenarios right now. The biggest thing you cannot even comprehend is the joy your child will bring you, as well as the entirely new and wonderful perspective. You will learn to appreciate life in all its tiny and beautiful details. You will relish in the things which other parents complain about: My child is impossible to keep up with! My childnever stops talking! My child is always running away from me at the store! *Isn't it GREAT??* You will learn and grow and love in ways you could never have imagined. While there will be times that your heart will ache for your child, your own life will be more amazing, and your world will be more miraculous because your child is in it.
How do you deal with difficult questions from onlookers?
The main thing is that I make it positive. I reject pity or sympathy, ESPECIALLY when Avery is with me, because she is anything but pitiful or pathetic, and I resent anyone's implication that she is. I actually don't mind people asking questions though - I actually like it! What I don't like is when people shush their children's questions. And there are a lot of times when I have to suppress the urge to poke people in the eyes - when did parents stop teaching their children not to stare?? And it's not just children! If you have a question, go ahead and ask, don't stare at my beautiful little girl as if she's a freak!!
What is one thing you wish families with typical situations realized about families dealing with special needs?
I think that "normal" families can only really imagine the "hardships" related to raising a special needs family. What they really can't comprehend, and are missing out on, is the joy we are blessed with. We don't need or want your pity, and when you pass us on the street, we wish you could see our child for how amazing she is, not for what you perceive as lacking.
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
Disneyland or maybe a cruise :)
What is your child's favorite toy/therapy tool?
Wii and Kinect :) Also the smart cycle!
What is your favorite coffee (or coffee alternative) drink?
Hot cocoa with whipped cream. And maybe a candy cane for stirring around Christmas time :)
And just for you:
Avery has undergone some very cool and very different treatments and therapies, from hippotherapy to her recent Selective Percutaneous Myofasical Lengthening surgery. How do you find out about this treatments? What is the research process you go through in deciding what treatments to pursue? And share what it's like to travel for treatment?
Hippotherapy was very easy - our wonderful physical therapist was also involved with hippotherapy, so that's how we got into that one :) Everything else was more difficult. We first heard about Anat Baniel Method (ABM) therapy when somebody sent me Anat's book after reading my blog. They told me they thought it would be beneficial for Avery. Avery wasn't really making much progress in traditional PT anymore, so I had already started researching alternatives. I resisted ABM for a while, simply because there wasn't a practitioner nearby, and I knew it would be expensive. But I continued researching and asking questions - I looked into specialised massage therapy, cranio-sacral therapy, chiropractors...and some others, but I kept on coming back to ABM, and finally decided to give it a try. The more I read and saw, the more the philosophy made sense to me, especially with regards to cerebral palsy. And we started to see exciting progress pretty rapidly, so we have continued. It was one of our ABM therapists who put us on the path to selective percutaneous myofascial lengthening. Again, lots and lots of research there. The other surgical option we were debating was Selective Dorsal Rhizotomy with Dr Park in MO, which we heard about through news articles I think. We went with the less invasive option, and hopefully won't need to worry about the other one!
Travelling for treatments does add another layer of stress. We see two different ABM practitioners - they live in close proximity to each other, but about 4 hours from us! In this post-op phase we are in right now, we (me plus the 3 kiddos) are going up there every other week for 5 days. Surgery in another state was even more nerve wracking. It turned out to be a great trip though - one that I think Avery will remember for the trips to the zoo, aquarium and museums as much as the surgery :) And my children are getting very good at long car rides!
I would like to mention a project called Beating Paths. (beatingpaths.blogspot.com) In all my research efforts, the thing I found most useful was the testimonies of parents who had been there, done that. Doctors and practitioners can tell you all the clinical stuff, but it is the parents who see the day-to-day stuff and can really tell you how a particular treatment affected their child. That is why I recently started this project - because I really believe that we "special" parents need each other, and can help each other when we're having to make these difficult decisions. There are so many options out there.