Wednesday, March 28, 2018

An Open Letter...

to all my friends who don't have medically-fragile children,

   First, let me start by saying I miss you. This stage of life we're in, raising tiny people, can sometimes feel like a run-out-the-clock (until bedtime) sort of situation. I know we're both busy. I know life is crazy. It doesn't make me miss you any less. I think about you more than you know.

   I realize I am MIA from time to time. And, I know there are times you take that personal. I'd like to ask you to take pause before you let it hurt. It's not intentional. I promise. Sometimes I can answer your text right away. Sometimes I open it and immediately have to drop my phone and run. And, unfortunately, I never know which one it's going to be.

   I need to apologize. I know that there are times it seems like I think I'm superior to you because I'm going through something you can't understand. I'm sure I've unintentionally given off the vibe that "I know your life is stressful, but look how much more stressful mine is..." I also know I probably seem selfish because of how often I talk about my family's needs. You are probably tired of hearing about how hard my life is or how painful it is to watch my child go through this or how frustrating insurance and doctors and big pharma are. I'm sure you are tired of hearing the same prayer requests at every church service or prayer meeting (and if you're not, that's because I'm afraid you are so I don't bring it up anymore).

   I am really sorry if you've ever felt that way.

   I'm sorry for the times you have felt overlooked because it's 'always about me'. I try to not let this be the case. But, to be honest, when those moments happen, more often than not, it is a desperate plea for you to SEE ME. For you to notice me. To hopefully be understood on some small level. And, to be shown grace for all the times you've felt like I've let you down.

   Because the truth is, you can't know what this is like. You cannot understand. And, to be really honest, it hurts when you say you do. Because that's when I know you really don't see me.

   The really hard thing is that, as much as I want to feel understood by you, I know the only way for that to happen is to have you going through the same thing. And, there's NO CHANCE I'd EVER wish this upon you. I would never wish upon you the constant worry and wondering when the next seizure is going to strike and never being comfortable or at peace if she's out of your sight and the nonsense of dealing with medicine schedules and refilling prescriptions and fighting with insurance and doctor's appointments and tests and more tests and not enough tests and wondering why in 5 years we've never had her seizures under control and giving every ounce of yourself every single day just to have to do it all night too and yet fearing sleep and slides and swings and pools and bath time and food coloring and candy (and trick-or-treat and valentines and christmas candy and easter egg hunts and birthday treats at school) and trips in the car and having to go to meetings at school to educate the staff on epilepsy and emergency procedures and writing protocols and changing EVERYTHING every few months because nothing works and trips to the ER... so many trips to the ER and dealing with soiled bed sheets and clothes because seizures take away her ability to control it and holding your unresponsive child and not being able to hold your other children because this one NEEDS you again and watching her be unable to form coherent sentences even though you can tell she knows what she wants but cannot find the words or seeing her blue and convulsing on the floor and begging God to heal her because you know that every single seizure has the potential to take her from you forever and still always hearing "not yet."

   Nope. I really don't want you to understand that.

   I know there are things that you have experienced that I cannot understand because I have not walked through those same trials. And, I apologize for the times when I have cheapened your experiences by presuming that I know what it was like to be you in those scenarios or, worse... made you feel like that matters less than what I've dealt with. Please, please forgive me.

   So, I guess what it comes down to is this... dear friend, I'm asking for grace and patience. Before you allow yourself to feel hurt that I don't initiate, consider the possibility that it was a bad epilepsy night and we didn't get much sleep. Before you mentally roll your eyes when I start venting about things, please consider that I'm trying to let you in on a very challenging and painful thing we're experiencing and I'm trying to help you understand. Before you tell me you "get it" or that you understand, maybe consider the possibility that you don't. And, know that I think that's ok. I don't need you to understand. Some days it's all I can do to simply make sure my family successfully makes it through the day. If I somehow am blessed with the energy to not only go out with you, but also have the mental capacity to hold a grown-up and coherent conversation, please, at some point during our time together, just listen. That's all I really need. I need someone to hear the hurt, to hear the stress, to hear my heart, and to be ok with me just as I am that day.

And, please, always remember that (even when I can't express it well) I love you and am so grateful for your friendship.

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