Hi Miggy! I am so grateful to be able to share our story on your blog! My name is Natalie Jackson. I met my wonderful husband, Sean, when we were in college and we have been married for almost 16 years. We live in Utah with our 4 wonderful children, 2 girls (11, 9) and 2 boys (5, 2) and one on the way! After 3 typical pregnancies and very healthy babies we were stunned when we found out that our 4th child, Thomas, had Dandy Walker Syndrome. Dandy Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. Thomas is missing the part of the brain called the cerebellar vermis. A side affect of Dandy Walker can be hydrocephalus. We found out Thomas had hydrocephalus shortly before his birth. He was born on Oct 4, 2010 and 4 days later he had his first brain surgery where they placed a shunt to relieve the pressure from the excess fluid. At one month old he developed a shunt infection and had to have it removed and another one placed shortly after. Thomas was slow to the hit milestones that other babies do, like holding his head up, sitting up, standing, walking, and currently we are focused on teaching him to talk. We have been thrilled that he has been able to actually do these things because originally, we were told that it was likely he wouldn’t be able to. He has beaten the odds, and we have hope that some day he will “catch up” with his peers.
Miggy: Can you take me back to the day you knew Thomas was diagnosed with Dandy Walker syndrome? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Natalie: Thomas’ diagnosis came in stages. We first knew there were problems at the 20 week ultrasound. When we left the office we didn’t know much, but we did know that there was a problem with his brain. We were terrified. A few days later we met with specialists and after a more extensive ultrasound they gave us a list of possible diagnoses but couldn’t diagnose it exactly unless we did an amniocentesis. All of the possibilities seemed so scary. It was at this point that I remember hearing the word “terminate” and that was when it all sunk in. Termination was never an option for us, but I knew that they wouldn’t even bring it up if the problem wasn’t bad. We decided to get the amnio because I wanted to know what to tell my other children. If our son wasn’t going to make it to birth, I wanted to be able to prepare them. When we finally had the confirmation that he had Dandy Walker I was relieved because this was the best option of all the diagnoses that they had given us.
He is now about 2 ½ years old and he and doing really well. We still worry but I have much more hope. I know that there isn’t a cure, but he has been able to compensate for a lot of the problems that they thought he would have.
Miggy: Explain how Thomas' needs affects your day-to-day life?
Natalie: During the first 6 months of his life it felt like it was only full of hospital stays, doctor visits, appointments, etc. Since that time, we have found a normal rhythm for our family that doesn’t completely focus on him, which is nice. Thomas is highly functioning, which isn’t always the case with those diagnosed with Dandy Walker Syndrome. He is about 6 months or so behind in his development, and because of this he has had different therapies (OT, PT, etc.) about 3-5 times a month. I believe that this early intervention has helped tremendously. We work with him daily on practicing the things that he learns at these sessions, and we have found ways to work it into our normal routine.
Outside of that, I would say that the biggest affect that Thomas’ needs have on our daily life is that we have learned to celebrate the little things. When we first heard his diagnosis we weren’t given high expectations. Because of this, I appreciate the little steps he makes more; when he repeats a word, we give high fives, when he started splashing in the tub I took video and cried for days! For us, these are little victories he is achieving and they strengthen our hope that he will eventually catch up with others his age.
Miggy: What are the biggest worries you have for Thomas?
Natalie: I am a born worrier. This isn’t always a good thing, so I try not to think too far ahead and instead, only focus on what I can control. That’s a nice theory but sometimes it’s easier said than done! I think that his health will be a constant worry for me. There is no cure for Dandy Walker Syndrome or hydrocephalus. His shunt is only a band-aid for a bigger problem, and I worry every day about his shunt breaking or malfunctioning. Shunts are not made to last forever and a broken shunt means another brain surgery (not a fun thing to think about). I also worry that because Thomas is highly functioning he might easily fall through the cracks when it comes to getting him the extra help and assistance he might need.
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?
Natalie: We find a lot of humor in life and Thomas is such a fun kid that I find myself laughing at him (or with him?) every day. Something that isn’t really funny but some people might find strange is that we celebrate the anniversary of when he had his current shunt placed. That shunt is what has kept him alive, and I am as grateful for it as I am for his birth. We call it his “Shuntaversary” because, well, what else would you call it? Last year his Shuntaversary fell on Thanksgiving and I was in charge of the pumpkin pie, so instead of cake we had pie, with a plastic brain on it! We sang “Happy Shuntaversary” and had brain pie! He loves the attention and we are always looking for a reason to celebrate!
Miggy: How can people best approach or respond to Thomas? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Natalie: Thomas’ delays aren’t always noticeable to people that don’t know him. Because of this we have not had to face a lot of awkward situations. Sometimes I can get a little frustrated when well-meaning people around me try to reassure me that he isn’t “that” behind, or that “so and so’s little boy or girl is barely learning to blah blah blah too”. While I know people are trying to be reassuring, I sometimes feel like it minimizes the work he has put into accomplishing the things that come so naturally to other children, and I wish I could help them see that.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Natalie: For me, being a “special needs” mom is really not much different than being a “regular” mom. All four of our kids have needs that are special and unique to them. There have been so many times that I look at other mothers and their challenges and think “I am so glad that I have my challenges and not theirs!” I think the reality is, we all step up and do the best we can when we are faced with a challenge, especially when it comes to our own children. I have learned that I am tougher than I thought I would be. I am grateful I have been given all of my children with each of their unique needs.
Miggy: If you could say something to the mom who is just starting on this Dandy Walker journey, what would you say? What would you say to yourself if you could go back in time?
Natalie: We met with a neurosurgeon a few months before Thomas was born to talk about the plans and expectations for the future. He explained what we knew at that point and what the plan was going forward. Then he said “This is the plan, but he will tell us what he needs when he gets here”. We began grilling him with questions: “Will he live to be an adult? What kind of an adult will he be? Will he need our continual care? Will he walk? Will he talk?” He repeated what he said before, “He will tell us what he needs when he gets here”. And he did! I have often gone back to that phrase and have expanded it to mean “Be educated, make plans, but you can only control what is happening right now. Take it one day at a time. Enjoy the moment. Celebrate the little things.” That is the message I would share with the parent who just learned her child has any type of special needs.
Natalie--Happy Shuntaversary? I LOVE it. I think that's a brilliant way of not only finding the silver lining, but also to live in gratitude for the blessings you have. I really like how you said what has affected you the most is that you've learned to celebrate the little things. While we probably all know that's a good way to live, it's not always something we think about or do often. What a wonderful gift your Thomas gave you. :) Thanks for sharing him with us today--what a darling boy and a beautiful family! For more information on Dandy Walker, here'a link to the Dandy Walker alliance website. Also a link to Natalie's husband's blog and a post her wrote about Dandy Walker and Hydrocephalus.
If you or anyone you know would like to be part of the special needs spotlight series please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!