Thank you so much for including our family in your spotlight! Ty and I have been married for 10 years after being college sweethearts. We live in Minneapolis with our beautiful 1-year old daughter, Leah, who has spina bifida. Spina bifida is a neural tube defect that affected the way her spine was formed when she was just a 4-6 week old fetus. The area where the defect actually occurs is called the lesion, and Leah’s lesion happens around the Lumbar-2 vertebrae, right in the middle of her back. It means that her nerves below the lesion are damaged and it’s why she doesn’t have feeling or movement below her hips. SB also causes hydrocephalus, which is a build-up of fluid in her brain. It sounds scary and can cause brain damage if it isn’t treated, but luckily her is managed with a shunt. Most days we don’t even think about it. Because her legs don’t have feeling or movement, she gets around by either crawling or rolling in her wheelchair. None of this has affected how happy or smart or funny or incredible she is. I keep a blog and welcome visitors to learn more about us and Leah and to see just how normal life is: http://leahs-sb-journey.blogspot.com/
Miggy: Hi Jen! Thank you so much for participating in today's spotlight. Like you, I also found out about our daughters needs at an ultrasound appointment. Can you take me back to the day of that appointment and when you found out your daughter would be born with spina bifida? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Jen: I remember being so excited about seeing the baby. It was a Tuesday morning, and I was just shy of 20 weeks pregnant. The technician was very quiet through the ultrasound, and at the end she sent us upstairs to meet with my doctor. The doctor finally came in and said those words that I’ll never forget. “I’m sorry, your baby has many anomalies, specifically the neck and spine.” I cried so hard I thought I was going to throw up. We weren’t initially given a diagnosis, and they were all so serious about it that I truly thought the baby was not going to make it, or that it would die shortly after birth. We had a level 2 ultrasound the next day where they confirmed the Spina Bifida diagnosis, but they still made it sound like this was the worst thing in the world that could happen to her and us. They told us there was a chance she could have severe mental retardation and there was a possibility of having no quality of life. The hardest part was not knowing. Everyone said we would just have to wait and see, wait and see, wait and see. The rest of my pregnancy was difficult, and looking back I now realize how hard it was for me. I am thankful that I had that time to grieve, though, because I needed it. I was totally blindsided and walked around in a daze for a long time. I’m glad I didn’t have to deal with those emotions AND care for a newborn baby who needed a lot of medical attention because I don’t know that I would have been able to do that very well.
Now that I see her and hold her and watch her grow, I can’t even stand the thought of what if we believed them. I can’t imagine her not being in my life and not having the honor of being her mom. There are still times when I struggle with her SB, but it’s more about me than her. She’s going to be fine. This is her life, it will always be her life and she won’t know any different. I have to come to terms with her life being different than how I imagined it. The sting is gone but the scar is still there. That being said, if SB comes with her, then I’ll take it because I want all of her.
Miggy: Explain how Leah's needs affect your day-to-day life?
Jen: Right now it doesn’t have a huge impact on our life. She does not walk, so she is less mobile than other kids her age. We have to make sure we have her wheelchair when we go to someone’s house and when she goes to daycare. It takes me a few extra minutes to unload the chair and get her into it than if she didn’t have it. We are always worried about her shunt failing, so if she is extra crabby or shows other signs of shunt failure, we call her doctor. Right now her mobility isn’t a huge obstacle, but it will be once she is too big for us to easily carry her around. She’ll also need to use catheters and enemas for her bathroom management program, which will take time and practice for us to incorporate that into our daily routine. The biggest thing for us recently has been daycare. We were recently turned away from our current daycare because they were unwilling to accommodate her wheelchair and we had to find another place. Now I cannot even being to say how happy and blessed we are with her new daycare. It is amazing!! I just wish we didn’t have to find it in the way we did. It was a clear reminder of her difference and a fight that we weren’t prepared for this early.
Miggy: What are the biggest worries you face for Leah?
Jen: My biggest and greatest fear (and the one I try really hard not to think about) is that she’ll be excluded because of her disability. I worry that kids will tease her and ignore her and not want to be her friend because of it. I also worry a little bit about my husband and I being her parents, that we will help her too much or too little, and that we won’t do the right thing for what she needs. Then there are silly, irrational fears like what if she is working on the 50th floor and there is a fire, how will she get out? How will she be able to fly on an airplane? We live in Minnesota and I worry about how she’ll get to and from school or the bus or play outside if it’s snowing, which it does… a lot.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Jen: My husband and I have a pretty good sense of humor and try to also see the humor in life. She has had 2 brain surgeries to place and replace her shunt, which involves her neurosurgeon shaving part of her hair. We joke that her “million-dollar hair stylist” does a really crappy job.
Miggy: How can people best approach or respond to Leah? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Jen: The main thing I want others to know is that she is just like any other toddler. She’s going to fall down, get hurt, get dirty, be frustrated and frustrating, and oh yeah, she also uses a wheelchair. I like when people smile at us, or somehow acknowledge us, like when I’m dropping her off at daycare or we’re in a store. She’s a cute kid and she likes to wave at people, so it’s ok to wave back. We also try to be protective of her equipment and not let others use them as toys. They are part of her whether she’s in her chair or she has her leg braces on.
Miggy: Tell us something you love about Leah. A special story, a personality trait or just something others might not know.
Jen: There’s so much to love about Leah! I can already see that she has a kind heart. She loves babies and animals. When she sees a stroller or hears a baby, she points and says ba-bee. We have 2 cats at home that she loves to pet, when they let her, and she likes looking for the “minn-ahhs”, which is her word for cat (it’s how she says meow). Most of her words are animal sounds and she identifies them by their sounds.
Miggy: What is the biggest lesson you’ve learned since becoming Leah's mom?
Jen: I think the biggest lesson I’ve learned is that we really are blessed. Sometimes it’s easy to feel sorry for our situation or wonder “why me.” Then I look around and remember how much we do have to be thankful for. We have a lot of family and friends who love and support us, we have an amazing home that will easily accommodate Leah and her future needs, and we have the best medical care we could ask for. There are more challenges, more fears, more worries with Leah than if she didn’t have spina bifida, but it’s nothing we can’t handle. The other lesson I’ve learned is that I CAN do this, even though there were (and still are) days when I wondered if I could.
Jen, this was awesome, thank you so much. I don't know about anyone else, but the last line of your first answer made me cry. "The sting is gone but the scar is still there. That being said, if SB comes with her, then I’ll take it because I want all of her." Yes yes yes. So beautiful and so true. I also love what you said about how you want other people to realize that in most ways she's just a typical toddler. Sometimes these very visual reminders of little differences--like wheelchairs and missing arms!--can temporarily throw people off and it takes a few minutes to really see the child. Can you tell I really related to so much of what you said? Also, I bust a gut at her crappy million dollar haircuts...so great. :) Thanks again Jen, it was a pleasure to read your words and learn more about your sweet Leah. Wonderful girl and wonderful mama.
As always if you or anyone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!