This girl!

This girl!

Friday, June 15, 2018

Double digits and a big surprise!

10 years! I still can't believe it has been 10 years since I saw Sophia's beautiful face for the first time. I knew the challenges were going to be big but i didn't know how those challenges were going to change me. I didn't know how much I was capable of loving and caring.
To celebrate this big milestone, my aunt and I made a beautiful book about Sophia. my talented aunt captured my girl's spirit in her illustrations and I will be forever grateful for her collaboration. I gave it Sophia on her birthday and made a video of the interaction, I love how much attention she is paying to the PODD and specially to the book. It's moments like these when I see the progress and think that all the challenges we have faced the last 10 years have been absolutely worth it!

Happy 10th birthday my beautiful princess!!

Thursday, June 7, 2018

When the caregiver needs care

If you read my last post you know it has been a bit stressful around here, if not you can read it here. My mind has been working 24/7 trying to find ways to help Sophia get better everyday and dealing with everything that comes with it. Every time there was a crisis I'd lose my mind trying to figure out what caused it, was it the new herb? was it the full moon? was something I did? was it something I didn't do? I wanted to find the answer to these questions so bad that I ended up so stressed that I found myself getting upset very easily because of everything and anything: if I forgot something upstairs or if I spilled my coffee it was the end of the world. It got so bad that I caught myself yelling at Sophia for no reason at all. Those moments were the worst!
Almost immediately, the guilt and the anger, the sadness and the frustration and every other feeling in between, would pile up on my shoulders... so heavy. That big pile of feelings was like a thick brick wall that would stay between me and everyone else including my own daughter. That wall wouldn't let me accept my husband's comfort or my mom's hugs, not even Sophia's smile. I'm not sure why, maybe I didn't feel worth of any of them. I don't know but it hurt, it really did.
I needed to do something soon. Someone suggested that talking to a therapist could help me find ways to manage how I react to difficult situations. In the beginning, I honestly think it was going to be a waste of time and money, I mean, what was the therapist going to suggest? to count to ten? to step out and take a deep breath? to squeeze a stress ball? I knew all that theory, I just didn't know how to put in practice in moments of crisis. How was he/she going to help me with that?
I decided to give it a try and it was worth it! My therapist doesn't have the magic pill or the trick to be a happy person all the time but he does listen and validates my feelings so I don't feel like the worst mom in the world when I have a bad day. My loved ones had already said so to me but I guess I need to hear it from someone impartial. It was hard to admit that I too need to take care of myself so I can take care of Sophia, I guess I thought I needed to put my feelings away because she was more important and it ended up backfiring because they were piling up and hurting not only me but my daughter, my husband and my mom.
Now I look forward to the chatting with my therapist and I recognize that I have a lot on my plate and probably will for a long time but I also understand that it's ok to be mad, sad and frustrated at times and that doesn't make me a bad mom. It has worked, not every time but it's better and I am learning that I don't need to be a perfect supermom but the kind of mom Sophia needs and loves.

Friday, June 1, 2018

Back to nature

Hello again, it has been a very long time since my last post. I feel like the last year has been a really amazing roller coaster with many ups and downs and so many highs and lows. We are still fighting the epilepsy monster but it seems like there's another monster that tagged along: pharmaceutical side effects. I watched how my very happy and active daughter was slipping  away from me and all that was left was a very drowsy girl who was losing all the abilities and progress she had gained. I remember how sad it was for me to see my Facebook memories everyday because they showed how well Sophia was doing before the poison of the seizure medications she was taking. I didn't realize that it was the meds and not the epilepsy that were causing the regression and kept feeding the side effects by adding new ones and upping the dose of the ones she was already on, I was attacking a monster with another equally evil.
I started thinking really hard, and I mean REALLY hard. It became my full time job to find a way out of this mess, to find an alternative to the reality my poor daughter was living because I was convinced we didn't have to settle for what the western medicine had to offer, there has to be something else that could help bring my daughter back and I was (am) committed to find. So I read a lot about natural medicine and also talked to a couple of people who were  willing to share their knowledge with me. I realized that even though Sophia was already taking CBD oil it could only help so much while she was still getting big amounts of pharmaceuticals every day. Also, I paid more attention to what I was feeding her and started switching over processed foods for more home made ones. Then after countless sleepless nights, I made the very hard decision to wean Sophia off the pharmaceuticals. There was a huge conflict in my head because I was going to renounce to what I had been taught to believe growing up and I open my mind to a different way of healing and that is a very scary switch to do.
So the decision was made and knew the new road was going to be a difficult one, too. First it's the weaning process which brings withdrawal symptoms so I made sure to do it in a very slow and safe way. Second, I needed to make sure I gave Sophia an alternative to protect her from getting too many seizures whether that meant more CBD oil or trying different herbs and natural remedies. Lastly, I wanted to make sure I kept offering the most natural and nutritive meals I could to help her body heal and detox from all the bad things she had been getting for 9 years.
It certainly hasn't been easy, not in the least! It has been a constant search for and try different treatments, different herbs and natural remedies. Some work and some not so much, there has been a lot of moments of crisis when I've doubt myself and wonder if I did the right thing in choosing a natural treatment over a pharmaceutical one but even during the crisis I see the old Sophia to come back, she is walking again, she is moving a lot playing on the floor, she is alert and the interaction with other is much better. Comparing my daughter today to who she was two years ago when she was reduced to a rag doll too weak to lift her head, there's no doubt in my heart I made the right thing by giving her a fair chance to be the kid she is was meant to be.

Monday, October 9, 2017

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.

Friday, April 28, 2017

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.

Thursday, April 13, 2017

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.

Thursday, March 16, 2017

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