Well, it was a day that didn’t start the way we’d planned. Nothing went as planned today and while there was a lot of joy there was also some upset as my dear friend’s daughter was taken by ambulance to the hospital.
You’re probably wondering what happened and I want to talk about it, so let’s sit a minute and discuss this beautiful young girl I know, who is like no else I know, named Reagan.
She’s just barely a teen, but unlike many teen girls, she does not fawn over boys or new clothing styles. She has no apparent interest in any trends at all, but her smile is contagious and her eyes are loving.
Reagan doesn’t talk and can’t take care of herself. She’s got Phelan-McDermid Syndrome. I know you’re thinking, “huh?” I don’t blame you, 22Q13 is a genetic disorder that effects all parts of her life. She is wheelchair bound, eats through a tube attached directly to her stomach and does not talk. All necessities of her daily life must be performed by others on her behalf.
While you think this is sad and depressing, yes, in a way it is, but she doesn’t smile at you like it is. Her smile is bright and lovely and, yes, contagious. Her family, while often weighted by the concerns for her health and well-being, are also not sad or depressed. They are unmistakably joyful people.
We’ve been so very blessed to get to know Reagan and her family. Her parents are both amazing. They have very likely been changed and grown through the experience of having this sweet girl for their daughter. I know in the 7 years I’ve known them that they have all changed me. Reagan, I cannot express it, but just being with her leaves you feeling calm and peaceful. She is a joy and even in her silence, her lack of “communication”, she shares this with you.
Taking care of her can be difficult, but so worth it. Her life is precious and knowing her family has taught me so much about the value of every life.
Early this morning she was taken to the hospital for her third bout of pulmonary hemorrhaging. Her left lung does not function and her heart has a large hole in it that cannot be closed without open-heart surgery which could very likely kill her. That is a last resort option. But, because blood still pumps to her left lung the veins and arteries that direct blood there are weak and the pressure of blood trying to enter the non-functioning lung causes them to burst which sends the blood into her trachea. Some of the blood can get into her good lung and a lot of it comes up her throat and out of her mouth…she’s left coughing up her blood, choking on it and likely in pain that is untraceable because she cannot speak.
I’m sure some of you may be jumping to all kinds of conclusions based on this limited information, but I ask that you please don’t. This family is amazing and loving and the perfect people to take care of Reagan. No one knows her like they do and no one loves her more. They sacrifice so much to share that love with her and care for all her needs. She’s got regular nursing care, too, so don’t worry that no one is doing what needs to be done. Every expert and specialist that could possibly be had is in her life because the two people God chose to be her parents are right there for her every step of the way.
This is the third time this has happened in just about a year. The previous times they had to go in and place coils on the veins to correct the bulges and stop the bleeding, but this time it seems that the bleeding is slowing and likely stopping on its own. The scans show that the previous coils are holding.
But my thoughts are floating around in my mind, bobbing up and down in a strong current of anxiety and worry for Reagan and my friends. I love them so much, you see. It hurts to see them going through this, to feel helpless and even useless. Please pray for them, for sweet Reagan, for her dear parents and her sisters.