A Day in the Life

I get asked or told often, “I don’t know how you do it” referring to taking care of Skylar and dealing with everything that she goes through. The truth is I’ve never thought about “how I do it” because I just do. For my household, it’s our normal. Doctor’s offices, ER visits, OR waiting rooms, oxygen machines, suction machines, and a mini hospital in our house with all of the other equipment and supplies that we have is just how we do life. Is it hard? Absolutely! Throughout the years, I have been able to really contain my worry until it’s necessary. I get concerned of course but not that gut wrenching, can’t eat, feel nauseated type of worry that comes when you know something is not right.

Having a child with special needs is a journey that nobody could possibly understand until they can actually experience it from themselves. I work a full time job and it’s a struggle. Skylar goes to school and she has some amazing people that care for her and that truly love her so I know that she is well taken care of but having to balance it is hard. Making decisions about when to pick her up to go to the ER because you know that she needs to go but you’ve also missed so much work that you’re trying to leave as close to end of the day as possible but also keeping in mind that you are about to spend 4-5 hours in the ER at least and you don’t want to get home at midnight. You have this overwhelming sense of guilt because as her mom I want to be there when she’s upset or having a bad day but it’s not always possible. I want to stay home and be the one to care for her when she’s struggling but not working has never been an option for our family. Instead I put her on the bus and pray for her and the ones that are with her during the day and hope that she doesn’t have many issues. There isn’t a day that goes by that I am not texting her nurse about something, calling a doctor, making appointments, talking to supply companies or something to do with her or her care. For parents that have children, you understand what it’s like to be caregiver to someone and you know what it’s like to have a baby and have them be fully dependent on every need that they have. You also know what it’s like for them to become independent and be able to do things on their own and as they grow and get older the more they do for themselves until they are completely self-sufficient. For those that have never been a caregiver before will never understand what it’s like caring for someone for every need that they have and knowing that it will never change. Having Skylar has been one of my biggest blessings in my life. She has taught me so many things and I am proud to be her mom and I would love nothing more than to spend the next 40 years caring for her every need. I love being her mom and caring for her so I don’t want it come off as if I don’t but it’s hard. There are no days off and even in her best days we have a routine of respiratory care and feeding, inhalers, medicine, and more. I say this not to complain but to shed some awareness on what parents of special needs children deal with. Yes, I understand the worry that parents go through with typical children and I know that as parents we’re going to worry about our child. Having a typical child as well, I can understand the worry that parents go through but they truly have no idea. I don’t worry half as much about Sawyer as I do Skylar. He’s a healthy boy and I might wait a little longer than I should sometimes to go to the doctor because I don’t have that sense of urgency when he’s sick because I know he will be okay. Obviously, if something was wrong it would be a different story and I would worry about him like I do Skylar but I don’t treat him like a fragile child.

You also have those that will say that they aren’t sure why people pay so much attention to our children because nobody’s time is known. While that is true, you have no idea what it’s like as a parent to deal with a medically fragile child who has a limited life expectancy. You dream of your children graduating high school and going to college, getting married and having children of their own and I just hope that my child makes it to her next birthday. Almost every day I am having to do something to help her to make sure something more serious doesn’t happen. Like keeping her warm so her temperature doesn’t drop to low 90s and her heart rate doesn’t go below 30s and making sure she has oxygen and suction so she can breathe.

Living the life of a special needs parent isn’t glamorous and it’s not for everyone. It takes some really strong men and women to go through the things that we do day in and day out.  Skylar is a medically fragile child and I am fully aware that there are children that are much worse than her. She has been through a lot but I know it can always be worse and I thank God for our many blessings and every day that she’s here. I commend parents of special needs children and what they go through on a daily basis and how much they love their children and how much they do for them. We all want our children to be healthy, have “normal” lives, be treated like any other child, enjoy the same experiences as any other child and have the best quality of life that any parent could ask for. If I had one wish it would before Skylar to be able to experience life as any other child. No wheelchair, no feeding tube, no oxygen, or any disability and illnesses and to be able to run and play and eat pizza and ice cream and live life like every other child. One day she will but just not on here on this Earth.