Q: Tell us about your family.
A: Donald and I have been married for 11 years and have three daughters, Alexandra (8), Lorelai (6), and Elisabeth who will be 4 years old this month. In addition to hydrocephalus, Elisabeth has severe epilepsy and is cortically blind.
Q: Tell us about the moment you were told your child had hydrocephalus.
A: When I was 16 weeks pregnant with Elisabeth I went in for a routine ultrasound where they discovered the hydrocephalus. It was the worst moment of my entire life. I was completely devastated, scared, and more than anything, confused; I had never even heard of hydrocephalus. The emotional pain I felt at that moment – when they told me her survival was not likely - was so strong that it turned into physical pain. I learned what it meant to have a broken heart.
Q: How has hydrocephalus affected your daily life? Maybe give one "real life" example.
A: The hardest part (actually, the only hard part) of dealing with hydrocephalus has been the physical hardship. Elisabeth has severe brain damage due to her hydro and cannot eat, talk, or walk. Now, after 4 years of continually carrying and lifting her, I injured my back and I am in continual pain. Later this month I will have a spinal fusion done to repair my back and after that we have plans to make our home a little more handicap friendly so that I don’t have to lift/carry her quite so much.
Q: Share a moment when you were frustrated or discouraged.
A: Fortunately, I don’t have a personality that gets frustrated or discouraged (except when the older girls don’t put their dirty clothes in the laundry basket.)
Q: Share a moment when you found joy or hope.
A: I remember when I was pregnant with Elisabeth and I was [at that point] not expecting her to live. I would sit and play hymns for her at the piano every day, hoping that they would bring her peace and comfort even while in the womb. Well, there were a few hymns in particular that spoke to my soul; that filled me with joy and hope; that made clear to me that the hardships we face here in this life are but temporary trials and that my family would be together forever in the eternities that follow this Earthly existence. When life is viewed from that perspective, the challenges we face don’t seem quite so big anymore.
Q: What do you do to keep your sanity? How do you take a break?
A: I love to clean and organize. When I’m organized, I’m happy. I also might have a small obsession with Words with Friends.
Q: What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
A: When I first learned that Elisabeth had hydrocephalus I was devastated and I spent a week or two in turmoil as I tried to digest the news. Now I see how unnecessary that was. Elisabeth may not be like other children, but she is my child and I love her. She fills our home with a spirit of love so strong and so pure that I wonder on a daily basis how we got so lucky.
So I would advise any other family who is receiving the diagnoses of hydrocephalus not waste time worrying and fretting like I did. The medical details are just that – details (and those details will all fall into place, they always do.) Instead, enjoy the little moments, the small miracles, and the beauty of a life that was meant to be.
Q: How do you deal with difficult questions from onlookers?
A: Oh, I love it when people ask me about Elisabeth! I am just so proud of her and I want to share her with everyone. Unfortunately, I have noticed that a lot of people seem uncomfortable around disabled people and tend to shy away. So if I see someone glancing at Elisabeth in her wheelchair I give them a smile as a way of letting them know it’s okay to wonder about her...and even ask me a question or two.
Q: What is one thing you wish families with typical situations realized about families dealing with special needs?
A: Honestly, I feel like we are the same as every other family. Every family has their ups and down, their triumphs and their failures, their joys and their sorrows.
Q: What is your dream getaway (either family, couple, or by yourself. . . or all three)?
A: We are hoping to take the children to London the summer after next. (Cheerio!)
Q: What is your child's favorite toy or therapy tool?
A: When Elisabeth was diagnosed with cortical blindness at 6 weeks old I turned to music to enrich her life. I am a violinist and a pianist, so we spend time each and every day in the music parlor of our home, enjoying music together. Elisabeth responds to music better than anything; we buy her toy pianos and bells and books that play songs and she is simply mesmerized by them. Also, whenever she is getting a CAT scan or a blood draw she holds perfectly still so long as I am singing her a song. To Elisabeth, music is magic and I am so grateful that in her life of limitations, she has found something that can bring her such joy.
Q: And since we're from Seattle:
What is your favorite coffee (or coffee alternative) drink?
A: Choffy! It’s 100% brewed cocoa bean and it’s über healthy. (http://www.drinkchoffy.com/divine)
Q: Out of all the hydro family blogs I read, your family seems the most flexible with travel. You are always on the go! Tell us about traveling with Elisabeth including challenges and how it has enriched your family experiences. What has been your favorite family trip so far?
A: We love to travel and my husband and I want to explore the world together with our children. Traveling broadens the mind and offers experiences so rich and unique; which is why we make a point to do it - even if it is a little hard with Elisabeth.
Traveling with Elisabeth takes a lot of preparation. There are feeding tubes, and medications to think about. And then there’s the fact that she’s handicapped and we have to bring along her wheelchair. The most difficult part though, has become diaper changes. Elisabeth is much too large to fit on a baby changing table in the women’s restroom, so finding private places to change her has become somewhat of a challenge. The other issue is: where do you change her when you are on a cross-country flight? Airplanes are not handicap-friendly in that regard.
So yes, travelling can be a bit of a challenge, but it’s always worth it. Our favorite family vacation has been the one we took to Niagara Falls last summer. We met up with 6 or 7 other hydro families. It was amazing, to say the least.
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