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!