Sometimes when I allow myself to stop and really think about how young I am in conjunction with my list of illnesses I wonder about things like an altered/shorter life span, my quality of life now compared to 8 years ago, I wonder if the pain will ever completely leave my bones. I think of the burden my health often places on my husband and family members and consider the possibility that my children may feel resentment as adults for the things we once did and do no longer because ‘mom can’t do that.’ That darkness creeps into my mind in those moments when the pain is great and my joy is running on fumes. The days when my mind is numb and I find myself wishing my body was also.
There are days when researching, reading, advocating and praying for cures to the diseases and disorders I have is exhausting. Days when I can’t paste on the undetected fake smile of the spoonie and a full/heavy face of make-up to hide the pale, tired husk and keep marching along. When the funny chronic illness memes make me tear up instead of laugh. Days when the worry over the outcome of court hearings for our girls consumes my thoughts and I’m overcome with fear for their (and our) unknown future.
As I sit here, day 10 post-op from my shoulder surgery I find myself in that place. My surgeon was really honest with me about the difficulties I will face managing the degeneration that is happening in my joints coupled with the laxity of my connective tissues and tendons from my EDS and I feel this looming sense of defeat. There was a hearing today and we’ve heard nothing yet of it’s outcome… I’m scared the judge does not see all of the facets of this case and thus won’t make good decisions that keep these children safe. From my recliner in my room where I am propped up with ice packs, I can hear my husband trying to juggle a high needs newborn who is fussy, the two toddlers who went on a visit with their bio-mom today and are suffering from the stress and confusion of that, our special needs 3yo and trying to help with the math homework our 11yo doesn’t understand. We juggle a lot as a team, but when I’m down, he is a one man show. He is the glue holding our family together right now and I would be lost without him and I’m so thankful for him.
My sister is coming this weekend to help when he has to go back to work. My sister who is a spoonie herself and battles her own chronic illness is driving from out of state to come help her baby sister. My mom and dad call almost every day to check-in, my in-laws sent a beautiful card that made us smile. A couple of my close friends are texting, sending PMs, FaceTime-ing me to check in etc. I have an amazing group of people praying for my recovery and praying for our family during this time. Still, the darkness finds a way to creep into the smallest crevice and try to overshadow reminders of the joy life holds even with these challenges.
So, I am now choosing to hear a full and busy home full of people who even in the middle of struggle know there’s a houseful of love surrounding them. I’m choosing to write and get it out there that this is hard and I’m struggling today, but also allow myself to be reminded that this is one battle and while inevitably there will be more, I am not fighting those battles today.
My friends, if you’re struggling with something today I encourage you to speak up about it. Call or text a friend, email me or leave a comment on this page; anything you can do, but please don’t just hold it in. There are people who care about you, who may or may not understand your specific struggle, but can listen and be supportive. People who if they only knew what was on your mind today would take the time to lend an ear or a shoulder. People who want to come alongside us and walk together on our journeys and help lighten the load.
One of my favorite verses of the Bible as someone who battles PTSD and anxiety has always been Matthew 6:34. It reminds me to let go of the worry and anxiety. You’re all on my heart tonight and I pray peace and rest for us all. Stay strong and keep fighting my friends and I will too.
“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” – Matthew 6:34 (MSG)