Monday, September 26, 2011

We're All Just Seeds

Meet Jen.  I have thoroughly enjoyed getting to know Jen threw the hydrocephalus community, and I can't wait to hear more of her story.  For some reason, her family just exudes fun, happy times.  It could be that her kiddos are so stinking cute and Jen is so stinking good at posting pictures of them living life.  And Norah is an inspiration to me of the possibilities for Aurelia.  Norah is a year older than Baby A and one year ago, she was doing pretty much the same things that Aurelia is doing now.  Fast forward a year and this kid is starting  to take steps!  WHOA!  And she's cute as a button in her little walker.  I can't imagine Aurelia walking in a year. . .but Norah has given me hope!  Stop by Jen's blog, We're All Just Seeds, and read up on this dynamic fam.

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.

I’m Jen (Jennifer, Jenny, Mommy or hey you). I am happily married to my husband, Jason, who along with God, gives me a firm foundation. I am proud to be the mommy to Grant (3), Norah (2) and Mason (3 months). Norah was diagnosed with hydrocephalus during my pregnancy.

Tell us about the moment you were told your child had hydrocephalus.

When we were told at our 19 week ultrasound that there was a concern, I honestly didn’t take it that seriously. Our baby girl had been so active throughout the ultrasound that they were having a hard time getting a lot of measurements. My OB was very reassuring and said to do this next step to be sure. So when we went to that level 2 ultrasound to see what was going on, I was devastated. I remember crying, yet trying to be strong at the same time since we had brought our then 12 month old son. It will always be one of the worst moments in my life, but it serves to add a bit more sweetness to the good times.

How has hydrocephalus affected your daily life?  Maybe give one "real life" example.

Everyday I can’t help but be aware of Norah’s behavior and shunt – I don’t think we go through a day where there isn’t an accidental bump to her head that brings concern. Norah does not stand or walk independently, so getting her and a baby somewhere fills up my arms. She does have a walker, but our house is old and small and does not accommodate her walker so we have to go places for her to really use it. We are slowly working to get our house ready to sell to find a Norah friendly house.

Share a moment when you were frustrated or discouraged

Norah has difficulty chewing foods and doesn’t make the growth chart for her weight. We work with her on developing chewing skills but it is something she struggles with. It gets frustrating when I see her chew a piece of food then spit it out because she doesn’t know how to finish chewing it or swallow it. Something that comes so naturally to most is such a struggle for her. I think she would thrive even more if she was getting all the calories she needed everyday.

Share a moment when you found joy or hope

One of the most magical moments in my pregnancy was when my husband watched my suffering with what if we our little girl doesn’t make it. I wasn’t preparing our house for her, tags were left on clothes and receipts attached to items just in case. One night he came to my rescue and told me that we needed to be ready for our little girl. He said to take the tags off. Even if we lost our little girl, we would have more children, and these would be a gift to them from her - a very healing night.

What do you do to keep your sanity?  How do you take a break?

Once a month, I go on a girl’s night out with some friends. For awhile, I had a farm (on Farmville of course, but that has withered). I have also taught myself to crochet. I enjoy getting lost in my thoughts while making the stitches.  

What advice would you give to a family who has just received a new diagnosis of hydrocephalus?

 Try to not get caught up in the “what if’s” of the diagnosis. Yes it’s important to think of those things but don’t dwell on it. Enjoy your precious gift, those moments are fleeting. Also make sure they have doctors that they trust, and work with them.

How do you deal with difficult questions from onlookers?

I’m still figuring this one out. Because Norah is so small for her age and overall is doing so great, when people see her out with her walker they think it’s the latest and greatest equipment to teach you child to walk. I get a little frustrated, but try to nicely explain that she needs it and why. I am always happy to answer questions because I won’t keep my daughter away from experiencing all life has to offer her.

What is one thing you wish families with typical situations realized about families dealing with special needs?

I don’t feel that we are all that different, yet I know we are.  We have a few more doctors’ appointments to go to and we don’t get to go to dance class; instead we go to therapy. It also take a bit more planning to go somewhere – will it be accessible for Norah’s walker or do we need to take a stroller for her, will there be food that she can eat…

What is your dream getaway (either family, couple, or by yourself. . . or all three)?

My husband and I have always wanted to go see Greece and Italy together. We were actually looking into going on a tour to do this when I found out I was pregnant with Grant. It went on the back burner but I still dream of getting there someday and now it includes bringing our kids with us.

What is your favorite coffee (or coffee alternative) drink?

While I’m always changing up my drink, my go to favorite is a soy chai tea latte.
You have three kids, one with special needs, and work outside of the home.  Yet you are so on top of things!  How do you juggle it all?  How do you stay on top of appointments, parenting, housework, marriage, and still add so many elements of fun to daily life?

Ha! This makes me smile, I was just saying to Jason that I feel like I get two pieces of the puzzle in place then look down to see that other pieces were moved out of place. I work in an emergency department, so time away at work is busy, often intense and focused. It helps me recognize that balance in one’s life is important as well, it helps to keep perspective on what these important things are and make them a priority. Nothing in life is certain so I try to make the most of it, my kids are lucky enough to come along for the ride J

One more thought…I have recently been asked by a few people how did you decide to have another baby after Norah? After having Norah many people thought we would be done having kids. We had a boy and a girl, the American dream right? Also with Norah’s diagnosis of hydrocephalus, people assumed it would scare us off from having more kids. Jason and I always wanted to have 4 or 5 kids, we would say we’ll start with one, stop at five and end up somewhere in the middle. So for us it wasn’t a matter of if but when to have another baby. I am glad that we choose to have another baby after so close to Norah. Norah and Mason are 22 months apart. It gave us enough time to see where Norah was going to be developmentally and prepare for that.  It was also not so far apart that it would be difficult changing up our routine or long enough to let fears build up that would stop us.

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