It has been almost 8 weeks since William was declared “in remission”.
Here is the next installment of what I’ve learned about recovery and adjustment.
1. It is not advisable to move to another state the week after leaving the hospital.
2. It is like learning to be a new mom all over again– complete with tears, laughter and wondering why you thought this was a good idea.
3. Emotionally, it is going to hurt and be draining. Feeling guilty for not feeling joyful all the time is normal.
4. Faith and belief are a practice of knowing and trusting what God says, even when you don’t feel his love or that he is trustworthy.
5. Great adventures have LOTS of obstacles.
These 5 lessons are mixed in below, exactly as they happened because life doesn’t come organized into lists and lessons with explanations. It’s messy, just like us.
On a Friday, Will had his final surgery. By the following Friday we arrived in a new state, knowing only one other family in the area. Nothing in our lives was stable, structured or familiar. Thankfully, my husband has 40 days off before starting his new job, so we set to work. The house was unpacked and settled in 8 days and we began to meet neighbors, and find our way. I also had to learn to plan and cook meals, balance both sons, learn how much sun William could handle and figure out life with my husband again. We also needed to establish care, which meant new insurance, new doctors and all manner of check ups in our town and in Baltimore, 30 minutes away.
In 45 days, we have had over 30 appointments from school registration and Early Intervention to endocrinologists, cardiologists, oncologists, and the usual physical and speech therapies. Through all this, my husband and I have been able to tag team and share the load. The stacks of paperwork are literally three feet high. In the midst of this I am seeking out friends that I can “military mom-date”– I have 90 days to make a new friend, trust her with my children, drop to one knee and ask, “Will you be my emergency contact?” The Bachelor has nothing on these quick, high stakes match ups. Oh, and your new friend may be moving the next month, so choose wisely.
Truthfully, this has been a hard time but also a time of great joy. We are savoring everything we can do as a family, often taking pictures and asking each other, “Can you believe we are able to do this?!” Both boys are blooming physically and emotionally. My quiet Jonathan is making friends, starting to talk and sign much more, and is smiling, laughing and playing without stopping to make sure a parent hasn’t disappeared. He is a totally different kid in many ways and it fills me with joy and thankfulness. William had a very rough time not being the center of attention and not being at eye-level, as he had been in the hospital crib. He is eagerly working on crawling, an scoot across a room at an amazing speed and is working on pulling to stand.
I learning to write these down and practice thankfulness rather than focus on how much farther we have to go. My heart is raw and little comments cut deeply. The constant evaluations of my sons’ progress, while necessary and helpful, feels like we can not start with a fresh slate. “Expert” strangers force me to recount every weakness and struggle the boys have so they can provide services to help, never asking about their strengths or assets. For a recovering perfectionist, it is hard to feel like all the ‘helpers’ are only finding fault and where we need to catch up. Coming to a new place and revealing all my vulnerabilities to strangers three times a week makes me long for those who are masters at celebrating the good. I am trying to balance not explaining our story to people with also giving them an understanding of where we are in life. The balance often feels more like a see-saw. I’m learning to give grace, the benefit of the doubt and to remember people have NO CLUE. Keeping a soft heart when the world wants to harden it is a process. Bitterness and brokenness don’t help anyone and certainly don’t glorify God or draw people toward Christ.
The appointments should slow down into 5 a week soon, but it feels like the Health Care Hydra- cut off one head and three more come back.. I often ask God if this actually will pass. It feels like the struggle will last forever– and I think it will. It may change and we may hit sweet spots, but the challenges are a part of becoming more like Christ. “Dying to yourself” and giving up your life, your time, your hopes and dreams, and laying them down and changing them hurts.
The benefit is that I can’t just hide in my house as many newly-moved families are tempted to do. We are leaving the house for appointments almost daily, or going to explore the state parks or going to church. Balancing adventure with an immune-compromised kid has been interesting, but we are learning. William has free reign on the floor, but we are constantly disinfecting and steam-cleaning. Yes, I am that disinfectant mom.
Right now I feel like I am sprinting on a broken leg; our family is making great progress but the pain is real and the healing will take longer than expected. We are mourning the loss of the familiar, the safety net of friends and community and the idea of “when we get there”. Now that we are cancer free, moved, readjusting, it seems like things should fall into place. They really are, just with a bit of a thud. Now that I have the chance to go to lunch with a friend or attend a birthday party, those friends are states away and we must begin again. I am realizing many “scars” I thought I had are really still wounds in need of care and cleaning, like all moms who have fought to save their child’s life and stabilize a family in crisis. I miss the intensity and focus of the hospital, where I could let little things roll off until later. I’ve awakened thinking I hear pumps, smell the plastic couch-bed, and even had a craving for the burrito. I miss the team of people who loved us so well, yet feel strange for missing one of the worst times of my life. If you are there right now, you aren’t alone.
The great news is, we are connecting as a family. We are stronger than ever. We are making friends and fighting for peace. We are starting to not are what mistaken impressions cause people to say ignorant or thoughtless things. We’ve reached “the Promised Land”, only to realize we have a fight on our hands before we can be comfortable. Still, God has provided for all of our needs and many of our desires. I know God is faithful, even when it doesn’t feel like it. Faith is trust God Christ more than your feelings about Him.
There you have it, folks. We are a mess, but we are a beautiful mess. Peace doesn’t just settle on you one day; ironically, you really must fight for peace. It is worth the fight.