My darling girl,
May you know that some days we are scared but every day we are proud of you. Here is my POV from your latest hospital admission. You're strength is unmatched.
A letter through my daughters hospitalization
Unless you have ever seen your child loaded up into an ambulance or a helicopter to be shipped from ER to ER, you will not know this heartbreak. Wondering if your child knows you’re there and will be meeting them soon - hoping they don’t feel that you’ve abandoned them when they are their most scared. But you know with each cry and little voice calling out “mama”, your heart breaks over and over and the pit in your stomach deepens.
Unless you have given up control of the care of your child you won’t know this fear. Coming to terms with the fact that you’re leaving your most loved person in the world to the hands of strangers. Praying they care for them the way that you would. Hoping that those who come in and out of her room to provide care take the time to know her and our family - to be patient and to act with caution and compassion.
Unless you have watched your child get poked and prodded for different tests, blood draws and IV sticks you will never know this pain. The pain that you feel trying to control your body and minds instinct to protect your child from what is causing them pain and discomfort. Trying to calm yourself and restrain from yelling out “please just stop!” as your heart and head beg for some respite for your baby. Hasn’t she endured enough?
Unless you have had to pack up all of your belongings in minutes you won’t know this panic. Wracking your brain wondering if you have enough to make them feel comfortable and make the hospital “feel more like home” - if that’s even possible - knowing you will be spending days/weeks within the same four walls. Let alone wondering if you have the necessities (medicines etx.) - the pressure you feel not to forget something important.
Unless you have sat in the silence, the calm after the storm, praying and crying over your exhausted and sick child you will never know this surrender. You’ve fought and fought all day and night, trying to get the best for your child, to advocate for them and their needs and you’re now waving the white flag because there’s nothing left to do but wait and pray.
Unless you have tried to distract yourself with social media throughout your hospital stay and find yourself feeling jealous that other families don’t go through these things; that others have children who won’t ever go through what your child goes through, you won’t know this truth. Wondering how others would maybe then see your point of view if they only knew the half of it….maybe then they would understand. This being a truth that is often followed by self loathing and shame - how could you think this way?
Unless you have looked down at your fatigued baby with tear stained cheeks, and wondered if you’re the reason they are here in the hospital, you will never know this guilt. Should I have set more boundaries? Should I have protected her more? Has my selfishness caused this? This feeling keeps me up at night. The devil knows this is my weak spot and he preys on it. I beat myself up daily over these things and wonder if I am making the right choices by her. I don’t wish this on you or anyone.
Unless your body has been your child’s source of comfort, you will never know this connection. When her little world has turned upside down and with every opening of the door more terrified tears fall, you are her safe place. She lays on your chest, her head tucked underneath your chin. This love, this connection, this bond has become a place for you both to reset and recharge.
Unless your families life has been uprooted by a hospitalization, you will never know this frustration. Gosh, you crave normalcy for your child. Desperately trying to create some semblance of a schedule in a place where sleep, downtime, and routine are essentially non-existent. Trying to remain patient with others as you struggle through the days - days your child doesn’t understand. Attempting to “take care of yourself too” as others keep reminding you - knowing full well the only energy you have is being devoted to the care and attention of your baby.
Unless you have witnessed others drop everything to help you in your time of need, you won’t know this kindness. When life happens and your family is at the mercy of a scary experience, it’s then when you see those who love you show up. We are so thankful for the “village” that has been given to us. Each call, text, check in, visit and prayer…all of it is met with so much support and love from others. There is no way to say thank you enough. These hard times are made so much easier by those who can give us grace, meet us where we are at, and allow us this time to heal together.
Unless you have watched your little girl laugh and smile despite everything that has happened to her day after day, you won’t know this resilience. She giggles and plays when time allows and it’s the most beautiful sight you’ve seen. She doesn’t know, but this keeps you going. Your soul beams with pride and you’re filled with a lovely reminder of how strong she is. How much fight she has. Her smile brings tears to your eyes - the first set of tears since your admission that weren’t the result of heartbreak but instead out of pure love.
Whether it be a child’s diagnosis, hospital stay, scary medical experiences, or anything that can cause these thoughts and/or emotions - as parents I’m sure there are those of you who know and have felt exactly what I’m talking about in whatever way resonates with you and your family. And as I am wrapping up this letter I struggled with how to end it, how to wrap it up in a pretty bow and say “but it’s not all bad”. And for me right now, I just don’t have the capacity to write that ending. I don’t want to downplay our experiences and the experiences of others. But what I realized in that is I don’t have to write an ending. It’s not my job to write a perfect ending to a raw experience that we are currently still living. I will leave that to the creator who is still actively creating our ending. But what I can say is, we are grateful for where we believe our ending is going…
We are thankful to be home now and be given the opportunity to finish out our daughters recovery and treatment in the walls of our home. We are thankful that she is improving with these treatments. We are thankful for those who have backed us in the hospital setting and out. We are thankful that we have felt supported. We are thankful for little smiles and laughs that have made the good moments better. We are thankful that we have the most wonderful and strong and beautiful and funny little girl whom we love so much; whom we have the privilege to witness overcome any and all challenges she is faced with. We are thankful for her inspiration, her lessons. We are thankful for a God who weeps with us, who feels our anxiety and pain, who knows exactly what it feels like to watch your child go through hardship. We are thankful for His unconditional love and support. For He has answered many prayers of ours through this process.
So yeah, I won’t be writing any “red bow” endings tonight. What i will do is lay all of those above experiences and feelings at the Lords feet tonight - Knowing that it was hard and heart breaking but also knowing we can give it all to Him because he cares for us deeply. Most importantly knowing we don’t have to write the ending - because He will and we believe He will make it beautiful.