Written July 22, 2014:
Today marks three months since we learned of Ryan’s diagnosis. In many ways it feels like a lifetime. So much has happened in three months and nothing has been left untouched by MS.
I read these words by Eleanor Roosevelt recently:
“You have to accept whatever comes
and the only important thing
is that you meet it with courage
and with the best you have to give.”
I think there is a lot of wisdom and truth in her words, but I would also add grace. Accept what comes and meet it with courage, grace and with the best you have to give.
That's what I'm trying to do these days friends. I'm nowhere near accepting or embracing Ryan's diagnosis, but I'm working to meet each day with courage and offering my best. Sometimes my best isn't much. Some days my best means just surviving until bedtime.
But getting out of bed each morning requires courage and strength. Walking through our days with an ever-evolving 'new normal' requires the utmost courage and grace.
There is not one piece of our life that has been left untouched by MS and I am reminded of that daily, sometimes hourly.
When I go to grab light bulbs or extra batteries or Kleenexes, I see medical supplies in the hall closet.
The bathroom cupboard also contains medical supplies.
Bottles of vitamins and supplements line the hall closet shelf. Ryan has a large pill container in the kitchen to remind him to take pills every morning and evening.
My fridge has a little blue box with Copaxone-filled syringes.
I open the mail and there's information from the drug company inviting us to a dinner or lunch on an MS-related topic or paperwork from the disability lawyer that needs to be filled out and returned.
The answering machine has a message from the home health nurse checking in to see how Ryan's injections are going or UPS is asking if we received the delivery of supplies they sent last week. In ONE day Fed Ex dropped off two deliveries and UPS left us a box. Ryan thought for sure our neighbors were going to think we were running an illegal operation out of our home.
Our finances are a constant reminder that we're trying to live on one income now…my income. The burden and responsibility of being the sole provider for our family will take me months, if not years, to accept. I’m slowly working to accept that it will always be necessary for me to provide for our family.
I open my email and the MS Society has sent me something.
Our fridge is filled with an abundance of fresh veggies...things like kale and spinach and chard and broccoli and cabbage and onions and bell peppers. These are good for the brain and body and help Ryan get all the nutrients he needs.
Instead of enjoying some light summer reading, my nightstand is piled high with books like The MS Recovery Diet, The Wahls Protocol and Managing Multiple Sclerosis Naturally.
I don't have a choice but to accept Ryan’s diagnosis. And I will. Eventually. But I'm not there yet. I'm still grieving. I'm angry. Some days I am terrified or extremely sad or just really really tired.
And that's why Eleanor's words ring true to me.
Courage: Just getting out of bed each day takes courage when your world has been turned upside down. I know one day it will be our normal and it won't all feel so hard and overwhelming and like so much change in such a short time. And it won't require so much damn courage to face the day.
My best: With time it will be easier to give my best. Especially to the kids. I don't want them to get leftovers. Some days there isn't much left after working all day and constantly thinking about paperwork and referrals and the upcoming doc appt. So the goal becomes to just make it through the day. But I’m trying to give my best…fight through the fatigue and the fear and ask God to help me give my best to my family.
Grace: And that's where grace comes in. I need it. I need to offer it. I'm receiving it. I'm believing that the God I serve has abundant grace he is pouring out on me daily. As I receive his grace, I'm offering it to my loved ones as we walk this path together. He doesn’t offer grace for tomorrow, just for today. So I'm learning to reach out and accept it. Grace to let go of what I am not able to do any longer, grace to accept what is and grace to trust that He’s already got tomorrow in the palm of His hand.
A New Normal?
People ask if we’re beginning to get into 'a new normal.' No. Not yet. A major health diagnosis is like a death in a lot of ways. The death of a dream about what our future would look like. We’re grieving the loss of health and independence and our extreme financial loss and our familiar roles in the home and family. We’re grieving that what we thought was temporary, is permanent. We’re grieving loss of control. Grieving takes time. So no, we’re not into a new normal yet.
I don’t even know what our new normal might look like because it still seems to change every week and with every doctor’s appt.
One thing I have learned in my years of waiting and longing for babies--and through a long season of unemployment--is that grieving is not to be rushed.
Grief comes in waves. In the beginning the grief was hourly. Now it has moved to daily. It still catches me by surprise. Sometimes the grief is like a piercing pain or a slap in the face reminding me that things are different now and will always be different.
Other times the grief is deep and all-encompassing and it takes my breath away. It makes me want to vomit because of what I see or hear or read or know to be true about this disease.
The first three months of life with MS were marked by incredible feelings of being overwhelmed. I am still very overwhelmed some days, and other days I find myself just grieving the loss of Ryan’s health and laying His future (and mine) at God’s feet. It is healthy to grieve so we're going slow.
And we might be here for a really long time.
While I’m grieving, I’m also praying. I pray for my friend K and her newly adopted son. I pray for my friend H and the medical challenges of her children with special needs. I pray for my sister-in-law as she battles her own life-changing health diagnosis. I pray for my friend J as she seeks medical help for her long, exhausting struggle to be pain-free.
In all honestly, I pray less often for Ryan. I pray about specific doctor's appts, but praying about our future and his health is deeply painful right now. We have dozens of people praying for our family so I trust they are petitioning the Lord on our behalf and I rely on their prayers to uphold us.
Joni Erikson Tada says: “The deeper the pain, the tighter the embrace.”
Instead of praying, most often I just cry out to the Lord in my pain and He holds me. These kinds of prayers don’t even need words. I know the Lord is grieving with us. He is grieving for this broken world and the heartache and pain and loss we're experiencing.
He doesn’t give me answers or explanations.
He just holds me.
And that’s enough for now.