This is hard and we get angry!
Not at anyone specific (usually) but at what our children endure daily and our inability to take it away. Our journeys may differ slightly but our anger comes from a common place, our children live a life filled with struggles and it's too much to bare at times. So we often silently struggle with our anger and hurt.
The truth is, at times, I need to be allowed to just be angry.
I'm angry because my child never gets to taste anything... nothing. He watches the world eat snacks, meals, and even slurp down tasty drinks. While everyone else chooses which flavor to pick, he is forced to choose between quenching his thirst or drinking a few sips of water and suffer so much that he needs pain medicine.
I'm angry that every meal reminds me that there is a plate that I will never get to fix. And when our family gathers around the table he feels the isolation of his reality.
I'm angry because at any moment I could be plucked right out of any resemblance of "normal" life, spending weeks in a hospital. Missing out on the routines of "normal" life has a way of making you feel invisible to the rest of the world. I am forced to miss out on the gift of being able to care for the needs of ALL of my children.
I'm angry because my child lives for weeks and weeks in hospitals. He suffers through painful procedures, frequently requiring him to be held down while he screams for help.
I'm angry because he can't be around a lot people for fear of germs. His immune system kicks into overdrive when an illness enters his body. And because he has a central line (permanent IV) he is at extreme risk for infection and sepsis, so he is hospitalized for days with a fever of 100.4 degrees.
I'm angry because some of the best doctors in the country tell us that our child's illness is most likely so uniquely rare that we shouldn't expect a cure at this point. How does a mother digest those words? Our child is perfect to us and he deserves a perfect outcome.
I'm angry because daily life can be difficult at times and the possibility of him ever getting to do normal kid activities diminishes everyday. He is supposed to be playing with kids his age and enjoying parties, not living in a bubble.
I'm angry because I have to watch so many of our friends, daily, struggle with every fiber of their beings to keep their children alive. I have seen the unimaginable brokenness that comes with burying a child. Children shouldn't suffer and parents shouldn't have to anguish over making critical life and death decisions for their little ones.
So please forgive me because at times I am angry, but I want you to know that there is always something that can overshadow that anger,
I have faith that there is something bigger. There is a far better place where we walk free from pain, free from anguish, and free from anger.
My hope is in the promise of there being more to this journey than these things that make me angry. And by living faithfully in this season of struggles I am allowing God to create a greater purpose for my life.
I know that I must choose by faith to release my anger and receive peace in its place, so that I may continue to walk this path in grace. Peace allows me to take my eyes off of the hurt and focus on the joy of my children.
My faith gives me hope, without either I could not receive the peace I need to thrive in this journey.