I woke up this morning to a video on Facebook of a little friend of ours. She just had major reconstruction surgery due to Chiari and Ehlers Danlos. Her little "thanks for the prayers." made me remember how easy it is to get caught up in the How. It is hard to get to the How if we first do not step out in Faith. Right now everything around me seems very uncertain. I wish I could say I have never experienced this before. Sadly uncertainty pops up often in our life. But lately has been different. Before it was easier to reach out in Faith. I have grown very weary.
The last few months have been hard. We went through a family rough patch here. Most families experience highs and lows. Through the lows we try to drag each other along. This year has been different. Instead of pulling together, we did a bit of pulling apart. After realizing we are better together...life went back to semi-normal. Through it all I have been becoming more and more depressed. I wish I could say rainbows and unicorns fill my mind but that would be a lie. Seeing my body continue to fall apart and watching my kids hurt more felt like a weight I could not carry. I think another struggle has been having family and friends tell me sharing our story is wrong. Asking others to pray for us is selfish. And not letting my kids be kids is bad parenting. It has felt like a terrible slap in the face. Instead of feeling love, I felt great sadness. I have heard many times from other people with chronically ill family members, how toxic others can treat them. I thankfully had never dealt with it. Now I am. I think because I have always been a sensitive person I dwell too much on how to make it better. In doing this, I take away from the healing that needs to happen with myself and kids. It is mind blowing we are still in a place where others call you out on physical and emotional differences. It leaves me feeling trapped in a place I do not want to be.
All of this brought me to the video this morning. God always finds a way to place goodness in your life. A little girl, braver than I will ever be, can make me stronger. It is not an easy task living life with medical uncertainty around every corner. Yet we can choose to be brave, seek joy, and comfort others. This is something we must do. It is ok to be broken, sad, and cry out for help. It is never ok for someone to tell you not to "feel" so much. If that brokenness overwhelms you though, find someone who will hold your hand and lift you up. That is what makes us feel whole again.
A little update on our future:
Today we head to CC for Brooke to have an EEG. Next Tuesday she will have her MRI. I will be able to talk with her neurologist before I head off for surgery. Brooke has been nervous her seizures are returning or her Chairi is bad again. We hope the test can shed some light on what is going on.
Next Thursday I take Aidan to a specialist in Cleveland. We are hoping he can help Aidan with his very low energy levels and terrible pain. I would love if he could get some relief.
Next Friday Amy has a colonoscopy. Although this is routine, I am praying it will go well. I know she will be nervous and I want to have the strength to calm her fears.
In a little over a week, I leave with Tim for my surgery in Maryland. I am less than thrilled to being going through this again. I am very hopeful it will help. We will be there almost 2 weeks. I am not able to drive for at least 6 weeks. The last time I had this surgery my recovery was not easy. I am praying this time will be easier. I am so very thankful for all who have helped us! We are humbled by meals, car rides for kids, donations, and offering to come do our laundry. We are beyond grateful to all who are helping us with kids, Amy, and animals why gone. I love my village!