Hello everyone. I will take a second to introduce our family to you before we get started. My name is Anna, I am 26 years old, married to my best friend, Justen Brown, and we have a 20 month old who happens to be our ray of sunshine. Her name is Emery and she’s just filled with joy and a love of life that is contagious. She absolutely adores music, and not just any kind of music. Her favorite songs are “Carry On My Wayward Son” by Kansas, “Banana Boat” by Harry Belafonte, and “Don’t Worry Be Happy” by Bobby McFerrin. She’s a pretty amazing kiddo and I can’t wait to share a little bit more about her. When Justen and I have time to ourselves (ha, what is that?) we enjoy being outside, painting, and playing ping pong. We are just doing the best we can to navigate our differently perfect life and learning a lot in the process. I can’t wait to share just a little bit of what we’ve learned with you today.
Miggy: Hi Anna and welcome. I’m excited to have you here today telling us about your beautiful daughter who has Rubinstein-Taybi syndrome. Lets start at the beginning, can you take me back to the day your daughter Emery was diagnosed? Did you know when you were still pregnant, immediately after birth or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Anna: Hi Miggy! Thank you so much for having me. I just recently discovered your blog and absolutely love the messages you are spreading! I am so excited to be a part of that today.So, back to the beginning we go. In September 2016, when I was pregnant I was referred to a specialist because they believed that Emery’s heart was not developing correctly. During the next few months, it was a constant roller coaster. Eventually they said her heart was developing well, but then there seemed to be something wrong with her stomach. This set the stage for how the next few weeks would go for us. They would find something “wrong” and then we would find out what they actually found was okay, then the cycle would repeat. One of the last things found was what they thought was enlarged ventricles in her brain and we were referred to another specialist to get a fetal MRI. At this point we were just trying the best we could to deal with all of the worry and emotions surrounding the constant ups and downs. The results from the MRI showed that she did not have enlarged ventricles, but had “Agenesis of the Corpus Callosum.” This is just a really big term meaning Emery had not developed the bridge that communicates between the two sides of her brain. We were told that this is commonly associated with some kind of genetic syndrome, but there were people that lived with it and were totally “normal.” I remember getting to the car and just losing it. I cried all of the tears I had held in until then. We had already been through so much and I remember thinking “how could we take more?” Little did I know, we would go on to live through a lot more challenges.
Anna: Thank you for asking this question! I love educating people about RTS. So, first of all it is a genetic syndrome and without getting super science-ey and confusing everyone I will try to keep it simple. For Emery, it means she has a deletion on chromosome 16. RTS can be caused by both deletions and mutations. It is not carried by the parents (unless one of them has RTS), and is random. It is characterized by feeding difficulties, varying degrees of intellectual disabilities, and delays. There are plenty of places you can go to get the “medical” diagnosis so I would rather give you information on what RTS means for us. First and foremost, it means we have a strong, brave, determined young lady that doesn’t let her diagnosis deter her in any way. She is just this big, bright, shining soul that teaches us more about life than we can ever teach her. One way that RTS affects Emery is feeding difficulties. She’s fed mostly through her g-tube because she is at risk for aspiration. This basically means that when she swallows, it tends to “go down the wrong pipe” so to speak. She is able to eat a small amount of purees by mouth, but no liquids. I blend all of her food that she gets through her g-tube so if I’m not at therapy with her, an appointment, or feeding her, I’m usually blending. We do feeding therapy to try to help her with eating orally. Another way it affects her is that she just has to work extra hard to hit her “milestones.” She is currently crawling like a champ and almost pulling up on things. She is on her own tiny growth chart, has broad big toes, and adorable little, angulated thumbs. RTS means we spend most of our time either at doctors appointments or therapies. We have a team of about eight different specialists that follow her so we stay pretty busy. Something else that RTS means for us is that we are constantly on the lookout for potential problems. Because there’s not a lot of research, most of the studies have just detailed a HUGE list of potential problems that are common with RTS. So we just have to be on the lookout and take life as it comes.
This can be really difficult because there’s so much anxiety felt with thinking about the future. The list of challenges that could happen as a result of RTS is daunting to say the least. We do the best we can to take one day at a time, but sometimes the fear can creep in without warning. I think as a parent of a child with special needs, the worries are never ending and if you allow yourself to dwell on them, it can pull you under water before you even know what hit you. I worry that she will go through something that she can’t fight. I worry about how she will be accepted in the world. I worry that I’m not doing enough. So for me, the struggle of trying not to let those fears pull you under is hard. What always pulls me back is seeing what a beautiful, ray of sunshine she is. Once I think of everything she has made it through and how our lives have been changed for the better, it helps me stay afloat. Our dream for Emery is that she will see what a beautiful soul she is and that others will see it too. I pray that she sees her amazing potential and reaches whatever that may be. If you want to learn more about Emery, she is being featured over on https://goshout.love and there’s a short video clip as well as a podcast interview.
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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?
Anna: Yes! Finding the humor in life is such an important piece of survival in this life. So, one of my absolute favorite questions ever came from when were visiting with my little cousin. He is five years old and was sitting next to us. He saw Emery’s g-tube connector and says “Is that her charger?” I couldn’t contain my laughter and just answered that it actually kind of was! After I gained my composure I explained what the connector actually did. I think that will remain on my top funniest moments list for forever! A few other times that we just couldn’t help but laugh is when we were first learning about caring for a child with a feeding tube. I can’t even tell you how many times we ended up feeding the bed, the couch, or the floor. Oh, and my favorite, when we first started the blended diet and hadn’t learned about miracle syringes (if you don’t know what those are and you have a tubie, definitely look it up! You will thank me later) the syringes that our provider sent would get stuck and when we would try to get them to work, we would end up shooting food everywhere. Pretty sure we’ve had explosions that reached our ceiling. Food has been shot just about everywhere. All you really can do is laugh about these times because the alternative is to cry and that’s just not acceptable. Feeding all kinds of things other than my daughter and dealing with exploding syringes was never even part of my imagination or wildest dreams, but here we are just living through all of these magical moments.
Miggy: How can people best approach or respond to your daughter? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Anna: I wish that people would realize that we WELCOME questions. While we welcome questions, there are things people can switch in their vocabulary that will make the experience so much more pleasant. For instance, instead of asking “What’s wrong with her” you can say something like “Look at that adorable smile! If you don’t mind me asking, does she have a diagnosis” or “I see she has a feeding tube, is there a specific diagnosis that makes her need it?” I really don’t like when people ask what is wrong with her, because I want her to know that there isn’t anything WRONG with her. She is simply different and that can be beautiful. Something else that I want people to know is that they DO NOT have to say they are sorry. You say you’re sorry when you’ve done something wrong or to comfort another when someone dies. We don’t need sympathy, we need acceptance. We don’t need you to pity us, we need you to want to learn about us. I think it’s crucial to show people that different does not mean broken! Spend enough time around Emery and with a desire to learn about her, and you will see how different is both beautiful and amazing. She is so much more than her diagnosis and that is the main thing I want people to keep in mind when they approach us. I want them to see a child, not a diagnosis.
Miggy: If you could say something to the mom who just starting on this Rubinstein-Taybi syndrome journey, what would you say? What would you say to yourself if you could go back in time?
Anna: This is such a great question and there are so many things I want to say. The first thing I would tell her is that life is going to look so much different than what you had in mind and it is okay to grieve. Let yourself become broken so that you can start putting the pieces back together. Right now, it is okay to not be okay. I promise that you will be okay one day soon. The next thing I would say is find your tribe. Facebook has a group just for families that have children with RTS and it will be your absolute best resource, more than google or any doctor will be. Connect, reach out, and ask for help. I actually have a blog post on advice for parents getting a new diagnosis that will go into more detail than I can on here so if you’re interested in that you can head over to lovebeyondlabels.com.
If I could go back in time and say something to myself, I would start of by saying that there will be a time you will feel okay again. Right now, I know it’s scary, raw, and dark. But you will be okay eventually and actually it will be more than okay. I would say do what you can to take care of yourself because you will need strength for what lies ahead. Don’t let yourself get buried under the weight of your life. I would also tell myself to look up and not down. What I mean by that is, for the longest time, I could only see our life, our troubles, and our feelings. Once I looked up, and started seeing the people surrounding me, the people going through similar struggles, the people that loved and supported us, I was able to drag myself out from the storm. I went through such a dark period in my life, but these things helped me get back to the light. I would say that the quicker you can follow these pieces of advice, the faster you will be able to see how beautiful your life is.
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Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Anna: Wow, how I wish I could write pages and pages on this! I think there’s a few really big things that becoming a special needs parent has taught us. First of all, something I have learned is that grief and gratefulness can coexist and you will weave in and out of these emotions all through your journey. When Emery was first diagnosed we experienced so much grief because we were grieving the life we imagined we would have. This did not mean we weren’t grateful for our beautiful daughter or for our lives. It took me a while to realize that it was okay to feel grief and sadness. There are still times that I feel that when I think about some of the challenges that Emery has experienced and the ones that are still ahead. I allow myself to feel those feelings while realizing that there is still so much joy in my heart. The next thing I have learned is that different DOES NOT mean less. Just because your life is different, it does not mean that you won’t live a full, beautiful life. Embrace the differences and live life to the fullest. The last huge thing I have learned is that life will most certainly hand you things that you cannot handle. What I mean by that is that you will not be able to handle them alone. I have had to learn that it is crucial to ask for help, and rely on the people and resources you have been blessed with. There will be times that you feel like you are drowning, but don’t forget to reach your hand up and find that hand to pull you back up again.
This has been so amazing just to have the opportunity to share a little with you. Thank you so much for all that you continue to do to raise awareness for our amazing kids and for individuals. I know I referenced a few links before but I’ll also list them here in case you missed them. You can learn more about Emery and our family from my blog www.lovebeyondlabels.com as well as our feature on Go Shout Love https://goshout.love. Thank you so much for reading and I hope something helps you in your own journey.
