Beyond The Diagnosis

Recently I was honored to be a guest writer for a friend’s blog- Journey with the Johnsons. She asked me to honestly share some of my thoughts, fears, and experiences as a mom with a complex chronic child. I was surprised at how well the article was received and decided to share a copy of it here as well. These are feelings I always carry with me, but very rarely ever share. Hopefully some other moms out there can get a little hope knowing that they are not alone in their fears. Please, be gentle, this is not an easy one for me to share.

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Casey, has MANY medical issues. Her condition is considered degenerative (getting worse over time). While her personality is bigger every day, her body is slowly (sometimes quickly) failing. Her list of diagnoses grows and grows. Some of the diagnoses are serious and we lose a lot of sleep over them while others are a little easier to handle.

As Casey grows her lungs are getting weaker. She needs oxygen most of the time, where even just 6 months ago she rarely ever needed it. Putting a nasal cannula on is easy, but what this signifies is very hard to accept. I know that her needing more oxygen means her lungs are getting worse. Her bones are very brittle and she breaks very easily. The bigger she gets the harder it is to move her and position her and she is at higher risk for more breaks. She has skin issues as well that increase as she grows. Her seizure activity and her GI issues are more complex each day.

We have been on borrowed time since Casey was born; this is something we are reminded of often. We have talked with her many specialists about what our future holds. We know her lungs will fail, we know her GI system will fail, we know her seizures will worsen, we know her body deformities will add to the internal systems failing and will eventually cause her pain.

For some people the end is quick. They may get sick and then in weeks or months it worsens and that’s the end. For some they may have a catastrophic event- a heart attack, a stroke, a big seizure. For others, like Casey, it’s a slow progression that started the day she was born. Some major illnesses speed up the progression, while some of her treatments may slow it down. We are very aware every single day that our daughter is dying. This takes a toll on a person.

On Casey’s good days we do everything we can to fill the day with things we know she enjoys. On bad days, we do our best to comfort her and to let her know she is loved. On bad days, especially when we seem to have many of them, we can’t help but wonder if our time is running out. In the back of our minds we are always preparing for the end. What will it look like, how can we be sure she is not hurting or scared, will we know when it’s time for us to let her go?

Iridescent-Chromatic-ButterflyBeing part of the special needs community has many rewards. I get to meet so many amazing people. One big down side however, is the loss. It never gets easier to watch someone lose their child. There are some children that remind me of my own, these losses are very hard and are very real reminders that at any day it could be my child.

My husband is my rock. He and I share our hopes and fears for our daughter. Some days are really hard. We kind of take turns pulling each other back up. I cannot imagine going through this without him. We have amazing friends and family that support Casey (and us). On bad days I may not return calls, or I may be a bit of a downer. Our support system never leaves our side or takes it personal if I disappear for a little while.

I have lost a few friends and we have grown apart from some family over the years. It hurts when relationships end, but the relationships that have remained and the new relationships that have grown are REAL. I know that the people in my life right now are in it for the long haul. I value the relationships I have in my life so much and I am so thankful for our amazing support system.

My priorities in life have changed a lot since Casey was born. I used to care about clothes, vacations, nice cars, and a lot of material things. I don’t care about any of that anymore. Now I care about the people in my life. Mostly, I care about Casey and making sure that she knows how much she is loved every single moment. The life I live now is not at all the life I pictured for myself. It is full life, and a happy life, just a very different life than I had planned.

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