When new challenges are a good thing

Slowly but surely Sophia has been making a lot of progress since I started weaning her off the pharmaceuticals, her personality, laugh, curiosity and her mobility are back. All these gains bring new challenges but I never thought this could be a good thing. Before decreasing the meds, Sophia was so tired and drowsy that she would either be in my arms or laying on the couch so I didn't need to worry about her falling while walking or her getting into places she could get hurt. She wasn't playing with her toys at all so I didn't need to check if there were loose pieces on the floor, we would put her to bed and I was confident she would stay there even if she woke up too early because she wasn't moving much. Her bed time was 7:00 and sometimes she could barley make it because she was so tired and out of it that I didn't need to find things to do to keep her up.
Well, things are turning around, the other day Sophia fell because she was walking too fast with her walker and tripped, she had a big bump on her forehead and I was so upset until a good friend pointed out that the fall was actually a good thing: It happened because she was waking!! She was moving!! She is going to fall again and that's makes it so "typical" so "normal" that I am actually looking forward to worrying about bruises and bumps.
Now I find myself cleaning up toys all day long because Sophia is actually playing with them and exploring everything around the house, I can barely keep up with her and the minute I look the other way she is off to the kitchen or the bathroom.  Sophia is asking me to hold her hand and walk around the complex where we live and she is checking everything out, it's as if she is discovering the world for the fist time after waking up from a deep sleep. She is making me move all day and  that's such a beautiful reason to feel tired at the end of the day. Sophia is so not that rag doll she was when she on the full dose of the meds and she is so awake and alert that now we had to move her bedtime to later! She sits on her bed and laughs and talks until she finally falls asleep in a funny position. We even had to put a bed rail! All these new things to think about and worry about are the type of things I thought were not in the book for us but Sophia keeps surprising us every day and I am very excited to see what else she has in store for us.
So we are going to have to baby proof the house, find different activities to keep up with Sophia's energy and have the neosporin and ice packs ready, because the new challenges that come with having a kid that wants and works hard to make progress are the kind of challenges that I can't wait for.

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!!

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.

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.