Sometimes things happen in our lives that put things in perspective. Yesterday afternoon I rushed home to drop Drake off with my parents so I could make it to a doctor’s appointment. Usually, this would be something I would need to reschedule. Between therapy, driving, meetings, and Drake’s rigidness I have to be very careful about scheduling anything for me. This could explain why my hair looks like rats have chewed the ends. However, yesterday, I needed to go to the doctor.
I’ve noticed in the last few months that my blood pressure is higher than it has ever been. Going to the doctor confirmed my worries. Gotta love turning the magical 40. That on top of my lovely genetics ( both of my parents have high blood pressure) and this little thing called stress, well it was bound to happen. I doubt many people go about their day thinking about death unless they are faced with it. There are so many people in the world fighting cancer, hooked up to machines because of a horrible car accident, heart problems, and a whole host of other illness and accidents can make us think about our life and the life of those around us in a much different light. Some of us have watched people die. We have seen the toll death can take on others and we have felt what it can do to us.
I get it. I’ve lost a child. I held her in my arms until her heart stopped beating. I know what death is and how one minute you have someone and then you don’t. I know how life altering death can be and how hard it is to move on after someone we love is gone. We are humans. We live. We die. Some of us live longer than others and some of us do not live long at all.
Yesterday at my doctor’s appointment the doctor did not give me any medication for my blood pressure. He wants three or four good readings before he prescribes anything. When I left his office I was upset because my blood pressure is high and it scared me a bit. Now that I’ve had time to reflect and talk with others in the medical field I realize this is standard procedure.
At the time, the only thing I could think about was getting a pill to level my blood pressure out because….
I. CANNOT. DIE.
Granted, I don’t think I’m going to drop dead because my blood pressure is elevated. But, I don’t have time for the inconvenience of having anything wrong with me. And again, I cannot die. Not now. Maybe not ever. I’m not afraid of dying. I’m a Christian. I know without a doubt that my home is in heaven. I know people who are there. My daughter is there, I have another child there who I lost in an early miscarriage, my father-in-law, my grandmother, friends, family and so on. I even know people right now who will be going there soon because their bodies are tired of fighting cancer, tired of holding on….just tired. For years I longed to go there. After Allen and I lost Lexi I wanted to be with her. It wasn’t really that I wanted to die, but there was a renewed reason to get to heaven. My baby is there.
Then there was Drake, and suddenly….I’m not ready for Heaven. Drake is autistic. He doesn’t talk. He doesn’t understand the craziness of this world. He doesn’t understand that some people are mean, heartless, and dangerous. Drake is good, innocent, simplistic, and perfect. Not everyone knows this about Drake. He relies on me to shine that light for him. He needs me to be his voice. Even if he does make the connection with speech, it will be a long road of therapy and help for him to be comfortable with language. He needs me. Maybe forever. Maybe not. The problem is I don’t know.
A crystal ball would be so useful. Don’t get me wrong, my husband would do everything in his power to continue doing what we have been doing for Drake. I have complete confidence in him, but there would be so many barriers in his way. He has to work. The only reason Drake is getting the amount of therapy and help he needs is because I’m not working. Allen works his butt off so that I can get Drake where he needs to be every single day. I am so afraid of dying and leaving them both. Allen needs to work and Drake needs to go to therapy. I have to be careful, always. I am more aware of dangers on the roads, parking lots, people, or anything that could cause harm.
I need to live. Not for me, but for my family. On the plus side, my husband and I are probably healthier than we have ever been. While it’s great looking at my slim and trim husband…in the back of our minds we both know if it wasn’t for Drake we would probably go buy a box of doughnuts and eat them all in the car. Seriously. Sometimes I just want two or three hot doughnuts. Then there is this little problem of old age. What will happen to Drake as an adult when I’ve done all I can do to keep my body healthy but old age takes me? What if Drake doesn’t become independent. What if he can’t live on his own. What if my husband and I die in a car accident and we don’t have that plan laid out perfectly. What if we can’t afford to have him put him in an adult facility later in life. Who will take care of him? What if we don’t have enough life insurance for him to be okay.
He will think we abandoned him. He won’t understand. But then, what if he does? What if he begins talking in a year or so. What if he does great when school starts and excels in ways we never expected. What if he becomes independent and doesn’t need me or his daddy. I wish I could grasp onto that hope and never, ever let it go.
The things we are sacrificing right now are to help him be as independent as he can be. We are doing everything in our power to make sure he will be okay when we are no longer here. I know that. My husband knows that. I just need God to understand. I need Him to let me be here until Drake doesn’t need me anymore. If that is tomorrow then so be it. But, if it’s 50 more years…then I need that too.
And to you, the reader. If you are walking a similar path, just know you aren’t alone. We are all trying to stay alive together. Being a special needs parent is unlike any other calling on the planet. We don’t sit around sipping our afternoon tea or coffee discussing our children’s friendships, college successes, academic superstars, scholarships, little league uniforms, and after school football practice. We sit around worrying about how to pay for the next therapy session, how to make the next appointment, how to engage our child, how to get them more socially involved, and how we can live forever.
When you lay your head down tonight and the thoughts come, as they always do…know that in many, many places in the world others are thinking your thoughts and wishing your wishes. We are in this together. Always.