Well, today surely hasn’t gone as planned! I just love when a monkey wrench gets thrown into my day. My youngest daughter, who has multiple medical conditions, had her first of many new specialist appointments since our move scheduled for this morning. That appointment lasted for over an hour, and it turned into a second appointment two hours later with another specialist. That appointment was followed by an x-ray and an order for fasting blood work. How is it possible that a 10 year old has an allergist, gastroenterologist, nutritionist, neurologist, psychiatrist, psychologist, and now endocrinologist? I don’t even have that many doctors. To say it has been a stressful day for both of us is an understatement. Her anxiety is through the roof and my head is spinning. My hope it that they are just being overly cautious and that we have nothing to worry about, but the worry always creeps in when it comes to her and her health. It is a never-ending cycle of appointments, tests, setbacks, and worry with her. It is almost like we take one step forward and two steps back all while we are on a horrible merry-go-round that doesn’t stop and won’t let us off. Every time we go to a new doctor, I have to drudge through her long history and spit out the long list of medications that I can’t even pronounce while trying to remember exactly which one is for which condition. Then, they look at her and how small and frail looking she is and freak out which in turn makes me freak out. Once they get to know her and run all of their tests, things generally even out, but it just takes a while to get there.
The thing is, I know there are so many kids out there that are way sicker than she is and who are fighting for their lives. I even know that we are lucky that her disease is not nearly as bad as it could be. Some kids with EoE are way sicker than she is and have way more challenges than she does. I know I should be grateful, and I am. I am grateful for the fact that she is able to function and go to school and live a somewhat normal life because I know so many can’t. I am grateful that she isn’t in a fight for her life. I am grateful to be her mom (even though I want to strangle her on most days). I am grateful that God gave this precious angel to me. I love that kid to pieces and my heart breaks for her over and over again. I am so grateful for her, but I am also angry. I am angry that we are in this situation. I am angry at those doctors who told me it was normal and there was nothing to worry about for 4 straight years. I am angry that no one listened to me when I knew something was wrong. I’m angry that so many of her issues could have been avoided and nonexistent if they would have listened. I am angry that this kid has to sit in the doctor’s office scared about what they are going to do to her and terrified that they are going to take one of her staple foods away from her. I hate that I have to sit there and watch her physically crumble as the doctors are talking and fight back the tears from spilling out of her eyes. I am angry that I have to see her break down as soon as the doctor leaves the room. I AM ANGRY! It’s not fair. It’s not fair that any kid has to go through this or worse.
Guess what? It’s okay to be angry, but what isn’t okay is letting that anger eat you up or consume you. Instead, we have to use it to fuel us to fight…to fight for our kids, to fight for ourselves, to fight against whatever bad comes our way. We have fought through each challenge that has been presented to us and we will continue to fight. I’m not going to lie. It’s exhausting. It’s not easy. It keeps me awake at night. It takes all of my energy some days, but it’s a fight I am going to continue to fight even if it kills me so that this kid can stop living in fear and worry. For all of you mamas out there dealing with things like this or worse, I stand with you. We can be strong together. We can continue to fight this fight for our kids together. I pray for you. I pray for your mama’s heart because I know it is in pieces. I pray for your little one. I pray that one day they will all be rid of these terrible diseases and sicknesses. I pray for peace in the midst of the anger. I pray for strength. I pray because I know with God’s strength, we will get through this. Hang in there. I know it’s tough. I know it takes everything you’ve got, but we’ve got this. We will overcome and come out on the other side. Yes, we may have a few more scars and battle wounds, but we will survive and our kids will be stronger because of it. Even when a monkey wrench gets thrown in the mix, stand tall and stand strong.
Anchored, Angry, and Fighting,