Just one more day

This popped up in my Facebook feed the other day and it brought tears to my eyes. It brought to the light a very known fear for me that was born the very same day I learned about Sophia's diagnosis. It has been kept deep inside my soul for the last 10 years but there hasn't been a single day that I don't think about it. When I saw this post I felt the need to blog about it and let it out.
From the day we saw in a routine ultrasound that something was up with the little girl we were expecting, I feared what would happened when I'm gone. When she was born I made the decision to live in the present and not worry about the future so I locked that fear in my heart. Eric, being the wonderful, responsible and smart provider for our family that he is he set up a trust and a will to make sure Sophia is taken care of financially when we are gone. That part of it is set and I know that a big step, while we were doing all the paperwork I kept my fears and the emotional part still locked inside me, I was focused on the practical part of the process, something that needed to get done and we did.  We work so hard to make sure Sophia has everything she needs, I keep looking for ways to help her reach her potential and I do my best to make her life as good as it can be... or do I? Am I doing enough?...
When I let myself think about it, I get so overwhelmed by sadness, panic and anxiety about how my baby's life would be when I'm not here to take care of her. My life is and has been for 10 years about being Sophia's mom, nurse, therapist, advocate, driver, cook and caregiver. Who is going to do all those things for her with at least half of the love, patience and dedication? Who is going change her diaper or take her to the toilet, wipe the drool from her face, feed her and bathe her? Are they going to understand her babbling and cute sounds? Is she going to know I'm not there? Will she be happy?...
When I saw this post by another special needs parent I realized I am not alone, I am not the only parent who fears about what they special needs child's future is going to be. I realized there is not much I can do but to wish for my daughter to have a long happy life with me by her side and yes, to wish that her time in this earth ends just one day sooner than mine.

What about them?

Recently a picture of a dad changing his son's diaper on a squat position went viral. It brought to light a difficult problem dads encounter when they go to a public restroom and there's no changing table to change their babies and toddlers. A movement was born from that picture and hopefully it pushes for a positive change.
That got me thinking, what about them? What about bigger kids with special needs who don't fit in typical changing table? What about the teenagers and adults who can't sit on a regular toilet and need a more comfortable and dignified place to get changed? We, as parents of special needs kids and adults, have been in the same situation like that dad; countless times we found ourselves changing our kids not only on our laps but on a filthy floor. This is a problem that some of us will continue to face as some of our kids may never be toilet trained for one reason or another.
 My daughter has been toilet training for a couple of years and we have made a lot of progress and she has more success trips to a public restroom than not but when she does have a accident, we dread the figuring out how we are going to change her diaper. When we plan trips to different places we need to think about the restroom situation and there has been a few times were we have decided not to go because we were unsure how accommodated the restrooms were going to be. Not fair. When we do go and Sophia has an accident we either have to wipe her while she is standing up which is not easy and healthy since I can't really be sure I did a good job leaving her clean, or we have to put a jacket or a blanket on a very dirty floor to change her. Again, not fair. This needs to be brought to the spotlight too! There are about 48 million people with some type of disability and 24 million of them have a severe disability. That is a lot of people who may need special accommodations just to use a restroom outside their own home.
We need to create awareness to this tough situation for these people and their caregivers and show the country the importance of having public restrooms equipped with facilities that accommodate everyone. There needs to be bigger changing tables, bigger handicap stalls with enough room  for a wheelchair and whatever other equipment the person has.
It's simply a matter of having the right to be treated with respect and dignity, it's a matter of being able to go wherever you want to go without thinking that you may have to lay down on a dirty floor because there's no place that can meet your needs. We need to have this conversation and bring this to light because no one deserves to be humiliated or to suffer just because they need to use the restroom,   no one!

If I was 20 years old again

The other day I found some old cds in a box I had forgotten about on top on my dresser. They certainly brought lots of memories from my life as a young adult a long time ago. As I was singing out loud in my car, I was transported to those times and I swear I could smell the apartment I used to live in with my father. I could almost feel the breeze of cold Bogota mornings when I walked to school everyday, I could see myself in my 2005 fashion outfit and thought: I truly had my whole life ahead of me and I didn't even know it! I didn't know I was going to blink and I was going to be almost 43! Where did those years go? What have I really done with my life? All of a sudden I realized the absurd number of things I could've done or the places I could've visited, the things I could've learned or the people I could've met... I guess that's what a mid-life crisis feels like. *sigh*
I started feeling trapped in the old body of a mother of a kid with special needs whose condition limits the number of things I can do now. I started wishing I could go back in time and be 20 years old again, be "free", be presented with all kinds of different paths to choose from. I wish someone had read to me "oh the places you'll go" and I actually followed through. I felt as if I had done nothing significant or important or valuable, and for a second there I thought I had wasted 20 years that I cannot get back.
But then I looked at Sophia's smile and suddenly it all made sense. If I had done anything different when I was 20 years old she would probably not be here. I would have probably stayed in Colombia and earned a master's degree in education and became an English professor. Or maybe I would have gone to Europe instead of coming to the United States, but then I would have never met Eric and our beautiful family would have never been built. I would probably never have been a Spanish interpreter and never would have felt the satisfaction of helping people who don't speak English. I realized that if I hadn't had this life the way it is, I would have never met some of the most amazing teachers, nurses and aides that have been in Sophia's life. If I had taken a different path 20 years ago, I would probably have never known the amount of love I was capable of giving, or how strong I could be or even how much pain and frustration I could bare.
So this is it, I am a 42 year old mom who is doing her best to help her daughter reach her potential and who doesn't give up on finding ways to make that girl's life as great as it can be. Maybe I can't recover the lost time, but I can make the best of what I have left. The path that brought me to where I am now is as great as any other, and I have Sophia's beautiful smile to remind me of that.

Self care and new goals

I am 42 almost 43 years old and I need my mama more than ever. Most of you know I was born in Colombia and came to this country 15 years ago leaving all my family, friends and culture behind. Here I found love and Sophia came to this world to change my life forever. It has been a very lonely road but my mom and my family have been supporting us from a distance every step of the way.
My mom has been coming to visit for the last few years and she usually stays for about 5 months, the help and the company she provides is invaluable! She takes over a lot of the chores and routines, she learns how to hook Sophia up with the feeding tube to give her medicine and even tries to read her books in English. She spoils her granddaughter with cuddles, hugs and kisses and she gives me and Eric the possibility to go on dates just like husband and wife. I can't even begin to explain how  grateful and fortunate I feel to have her here with us.
But the day of her return home is rapidly approaching and I am dreading the goodbye. It is always really hard for me to see the empty space where she sits on the couch, or her empty bed and the mug she has coffee every single morning, It's going to be hard to see Sophia looking for her abuelita around and I know it is going to take a while to get used to be just the three of us again. I have been there before and I know I'm going to feel sad and lonely, in fact I already am... That's the reason why I decided I needed to come up with a plan, I need to find something to keep my mind occupied, I need to find a way to take care of myself so I don't fall into a hole where I can't get out and care of my daughter the way she needs me to.
 I came up with two goals that I think are going to help me both emotionally and physically: A while back my wonderful husband got me a nice digital camera which I have played with a bit and now I  want to dedicate time to learn and practice nature and street photography. There is so much to learn and it is not easy but I am determined to have patience and enjoy the process because this is the one thing I feel really passionate about.
 The other goal is to focus on getting stronger and more fit at the gym, I lost 74 lbs and feel great about it but now I want to push myself and get healthier so I can really be there for Sophia and make sure I can do so for a long time. I had a seven day pass for this gym and realized I want to work on my strength and tone, they had boot camp like workouts and spinning classes which made want to push myself a little harder. I am going to sign up and commit to go at least 5 days a week.
For the last 10 years I have been focusing only on what Sophia wants and needs and that's has been my decision and choice, I do it with all the love any mother have for her child but I recognize I have left myself behind along the way,  that it's not healthy or helpful so I realized if I want to keep pouring from my cup I need to fill it. I realized it's my time, it's time for so much needed self care.

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.