The epilepsy monster

I try to keep this blog as positive as possible but truth is not everything is rainbows and butterflies.  I try to live day by day because experience has taught me you never know how long situations are going to last. If you follow our story you know Sophia has gone through a lot, from several surgeries to episodes of dehydration and a lot in between. But with no doubt the hardest of it all has been dealing with the seizures.
I can deal with accepting her condition, with researching everyday about how I can help her with her fine and gross motor skills, googling nonstop about the best spoon so she can eat more independently, modeling and talking everyday with her PODD even when I don't see a lot of progress back, going through a lot of trial and error trying to find the best sippy cup so she can drink safely on her own, sticking to her routine because she does better when we follow it...  I can do all this as long and as much as she needs me to and i’ll do it gladly, but what I have a really hard time dealing with is the fact that all this becomes a thousand times worse because of the seizures. It makes me mad when I see how epilepsy affects the progress she has made, her balance and strength have decreased and although she works hard everyday to gain them back she still struggles a bit.
It makes me sad when I see how much she is trying to be her happy self but the seizures and the side effects of the medicines she is taking steal the smile from her face. I recognize that this has been better than last year because the seizures are a bit more in control than they were but still, the struggle never ends... Sophia has a VNS implant and she is taking three seizure medications and it's not enough, that's why we decided to give CBD oil a try. There are different brands, and within each there are different strengths and components. This has been a struggle on its own! It's a lot trial and error but I didn't want to give my little girl anymore pharmaceutical with nasty side effects.
We think we found one that helps a little bit, we have noticed positive cognitive changes, the potty training has been successful 80% of the time, she is a little more focused and alert, she is playing with toys a bit more purposely and her smile is on her face more times than not. Although it's really great seeing all this positive changes, that good feeling goes away as soon she gets sick because any illness is much harder when you have epilepsy. A simple ear infection can mess things up big time. Antibiotics can make the seizures worse and all the progress she makes seem to fade away right before my eyes. Every time Sophia gets sick I have to see her endure a few bad seizures and it's heartbreaking, I see myself struggling with keeping calm and giving her comfort because my heart fills with anger and wants to fight this horrible monster and eject it from our lives for ever... but I can't, all I can do is let it all out on this blog and keep living day by day and doing my best to be there for my daughter, after all she is the one truly dealing with it all.

The need to fit in.

Why do we seek to fit in somewhere, anywhere? Maybe it's human nature to want to identify ourselves with someone, share the same interests and even the same struggles with a group of people so we don't feel so alone. This is especially true when you have a special needs kid, suddenly the number of people that share something with you gets smaller and harder to find making you feel even more alone.
My beautiful Sophia is really special and not only because everyone is special in their own way but also because genetically there's no other person like her (read here). When she was born we were given some literature about chromosomal disorders similar to hers which gave us little to no sense of what to expect because the range of characteristics were so wide. At that time I was not thinking about finding support, I guess, because everything was so new and I was focusing on getting through all the surgeries she had during those first years. But then time passed and I started feeling alone as I was struggling to find others whom I could identify with, even with the number of support groups that can be found on Facebook and other social media I was feeling alone. I found epilepsy groups, feeding disorders groups and speech groups where I could find answers to specific questions (which I'm grateful for) but still once my question was answered all the other things about Sophia, the beautiful and the also the difficult things about her condition would separate us from everyone else. I recently found a general special needs moms' group and I see posts from parents of kids from all kinds of different backgrounds, different diagnosis and different challenges but then I realized we all have something in common, we all want our kids to reach their potential, to be happy and we all fight really hard to make sure they are getting their needs met. I realized that although it's important to find and meet people to share the same experiences with, we should not let the different diagnosis or different struggles divide us but bring us closer together because we all do have one big thing in common: we are all parents of very special kids.
Maybe someday we cross paths with someone with the same condition as Sophia but in the meantime I am going to do my best to not let that feeling of loneliness stop me from enjoying the uniqueness of my beautiful daughter.

Keep calm and model on

It has been a little over 4 weeks since I decided to really immerse into the PODD and show Sophia what could be her voice. It's amazing to realize the amount of beautiful moments of communication that have been missed between me and my daughter and so many missed opportunities to chat, to share, to discuss. In my last post (read here) I mentioned I was stuck saying the same three things over and over, we were not having conversations so much as me telling her where we were going three times a day. But in the last month we both have had so much fun talking about everything! I am modeling a lot and she is definitely listening and taking it all in, we are talking about things in a more specific way like this week when the weather was beautiful and we were able to go for a walk, I took my time and I told her that it is spring and nice so she would be able to ride her wagon. Or the other day we were at the mall and Eric was shopping for shirts, Sophia and I were just standing there and waiting and then I thought: this is a great opportunity to chat and I told her what daddy was doing and that's why we were waiting. We watch Elmo and Barney a lot, we always have but now we talk about what the characters are doing and we both really enjoy it. It sounds simple and obvious but it is not, it is a lot of work and a lot to remember, a lot of putting aside the feeling of looking silly and the frustration of making mistakes, it's a lot of remembering to use the PODD to model everything all the time and everywhere,  but all this is not hardest part of the process. The difficult part is to teach Sophia that the PODD is a powerful tool for her to use whenever she wants or needs something or someone. I want her to understand that she doesn't have to watch the show I picked for her if she doesn't want to or play with the toy I chose for her if she wants a different one. I got her a switch with the toilet symbol on it with my voice saying "I need to go to the bathroom" so she can push it when she needs it, she is still not doing it even though she understands what is for because I model it all the time as well as the teachers at school. I don't blame her though, I have been anticipating all her needs for 8 years! I feed her at the same time everyday, I take her to the potty on a schedule, I know most of her favorite things to play with and I make sure she has everything I think she needs in the moment I assume she needs it. She is still learning that there's is this amazing language system that we are using to give meaning to all the signs and gestures that Sophia has been using all this years and that I have understood for the most part. But the truth is that I can't read her mind and honestly I shouldn't, Sophia is a human being with thoughts, ideas and feelings and I want her to understand that she has the right to share them with the world. I know that when she realizes she has the power to express what's in her mind she is going to be unstoppable!!

Watching Barney and talking about it.

Watching Elmo and also taking about it.

Communication is power!

We got Sophia's PODD (you can read all about it here) two years ago when her wonderful former teacher introduced us to this amazing communication system. It was all new to us and I have to admit I didn't use it as much as I should have, I got stuck saying the same few things over and over and didn't go beyond more than telling Sophia where we were going or that it was time to eat. She seemed to understand what I was saying but I was not making progress trying to communicate with her when she was upset or when she wanted something different to do. 

I can't say exactly why I was not taking full advantage of the PODD, maybe it was fear of making mistakes, fear of not seeing progress, distraction from all the medical issues that were going on or simple laziness. Maybe it was all of those things. About two weeks ago I decided to get serious about giving Sophia the right to communicate, I thought: if not now, when? if not me, who?. I have been following different blogs about other families using the PODD, watching videos and reading tips and suggestions on how to use it in different scenarios. 

Also with Sophia's teacher's guidance I have been focusing on acknowledging when she is upset and showing her that it is ok to be frustrated sometimes and then reading a story about a little girl who gets angry sometimes (see video below). I have to say that I am impressed and very happy to see the progress Sophia and I have made with this particular issue, I used to get so frustrated when I couldn't figure out what was bothering her and that was obviously not helping either one of us. We haven't gotten to the point where Sophia independently tells me with the PODD why she is upset but she is paying attention and seems to understand that I am recognizing and respecting the fact that she is not happy and makes her feel better again. Most of the times she is upset either because she wants more food or more of one activity or because she is tired and I am able to address those feelings giving them meaning with the symbols in the PODD. 

Even when I am not sure what it is that's bothering her, I am learning that it's still ok to say that I know something is wrong but not sure what and Sophia calms down because she sees that I am communicating with her. 

I am also working on talking about our day, where we went and what we did and how we felt about it. It is a work in progress and I am making a lot of mistakes but I am learning and most important Sophia is learning too. She is able to make choices and she has told us when she has enough or wants more of a toy or activity, at school she chooses what activity or book she wants to use and has answered comprehension questions about stories that were read to her before. The progress is evident and there is definitively more to come but I need to keep working on modeling all the time and everywhere because that is the key to her success. Sophia, just like everyone else, has the right to communicate what is in her mind, her needs and wants, her likes, dislikes and opinions about the world she is part of. 

I love Elmo

Who is Sophia?

Sophia is special.
Sophia is not a diagnosis and she is not a statistic. Sophia is special, and I don't mean special needs special but special. She is unique and not because there is no one else with the same exact chromosomal arrangement (read here) but because her personality is like no other.
Now, I may be a little biased here but she really is the sweetest kid I know. Sophia is also determined and kind, she is loving and lovable. The many obstacles and setbacks haven't been able to erase that beautiful smile from her face, the same smile that fuels my heart to keep on going when things are tough. She is also very smart, she knows exactly how to manipulate us into give hugs and kisses any time she wants and only when she wants them. Sophia can tell when I am sad and even though she can't say it with words, she can tell me that everything is going to be ok by putting her hands on my cheeks and looking right into my eyes.
Yes, Sophia has some disabilities but they don't define her, there's a lot of can'ts but there are also cans. She can't walk independently but she can crawl and she moves around when she wants, she can also walk holding hands or with the help of her walker. She can't play soccer or baseball (yet) but she loves bowling just like her dad. Sophia can't chew her food but she can swallow and loves to eat and she is always asking for more. She can't say mama but she can show me she wants me by reaching out for me whenever I walk by her. We may not bond over manicure and pedicure but by reading some of her favorite books or singing her favorite songs. Sophia can't say I love you but she can show me her love when she looks for my hand and holds it and doesn't want to let go.
Sophia is non judgmental and she is accepting of who I am, so much so that even on the days when I am being impatient or worrying about insignificant things she still wants to cuddle with me. She doesn't hold grudges and she can see past my many imperfections. Sophia has the incredible power of bringing a smile on anyone she meets, this is true even when she is not with them because it is impossible to look at her or even think of her and not smile! Even her doctors know her by her name and not by a medical record number because her smile is unforgettable.
I feel so honored to get to be her mama and I do wish I could make all the diseases, the surgeries, the difficulties, the setbacks, the stays in the hospital and the many medicines and their side effects go away because they have tried to cloud my Sophia's beautiful personality, I wish I could make them all disappear but I can't, because this was the hand we were dealt. What I can do is to keep enjoying of all what makes my daughter the special person she is.

I am only human.

Last year was tough! It was hard for Sophia who had to suffer through not only the seizures but also side effects for the many different medications we tried, it was hard for us to see our little girl's beautiful personality fading away.  The last few months things have gotten a lot better, Sophia's VNS has worked well along two seizure medications and she is getting stronger and is back to being the happy girl we all know. We are back to our routine and I am excited to say that she hasn't missed a lot of school this year.
Yes, everything is better now and yet I have found myself stressing out about little things, things that I don't seem to deal with the way I probably should. Most of the times that Sophia cries I'm able to figure what is bothering her, but on the occasions when I'm not I feel like I run out of patience rather fast. I try to use the PODD to see if I can figure out what's upsetting her so I can fix it but I get so frustrated when I can't. I'm frustrated with the situation not with Sophia but unfortunately I seem to show my frustration by raising my voice to her. When I realize I'm yelling, a huge wave of guilt takes over my whole body and I feel so sad, I feel like I am letting Sophia down by not meeting all her needs and by not being patient. I feel like I am not that super mom many people think I am, like I am not the mother Sophia deserves because I am not patient when she needs me the most.
I have been told  that getting frustrated is part of being a parent and that does not make me a bad mother but for some reason it is really hard for me to understand that it is normal and that I am not the only one who feels like a bad parent for losing it every now and then. I guess I got so used to the fact that Sophia is the happiest kid ever and it used to be rare to see her upset that I just don't know how to deal with it.
In the last couple of months these crying moments have been happening more often and I was having a hard time handling it until I realized that sometimes the reason why Sophia cries is not always because there's something really wrong going on but that she is growing up and she is behaving like a typical kid who cries when she doesn't get her way. This is kind of amazing if I really think about it, Sophia has very typical behaviors, she knows what she wants and when she wants it and she makes sure we know when she disagrees with what we are doing! I decided I am going to embrace this and enjoy the ride, I still have my moments of course  but I am slowly getting to understand that I am only a human who make mistakes and gets tired and frustrated but who is trying her best to be everything that Sophia needs and deserves.