The Good, the Bad, the Ugly, & the Miraculous

Oftentimes I feel like a roulette ball on the wheel of grief. If you’re not familiar with the five stages of grief they are denial, anger, bargaining, depression, and acceptance. I typically avoid bargaining, it’s not really my nature. The others I find myself in frequently, set off by the spin of a wheel, an unwitting comment, and the shade of our unique circumstances.

The Bad

One of the hardest things for me is when strangers see my girl and comment on how beautiful she is. This is often followed with, “Just wait till she’s a teenager” or something along those lines. It brings up anger and depression in me. Every time I’m faced with our reality it hurts and I instinctively feel angry at the person who made me deal with it, whether or not it’s warranted. (It’s never warranted.)

Then there’s comments like “hold on to these days, they go so fast.” I heard this statement so much when the boys were younger. I agree with it. With a shift in our perspective comes a shift in its connotation. Yes, one day I’ll look up at my sons and remember when they used to fight over who got to sit in my lap, these days are flying by. With Wonder Woman it means try not to forget these days because one day all you will have is the memories of her, the memories of your 3 children together, and thousands of iPhone pictures that won’t be enough. Cue the tears.

Then there’s the ‘special’ treatment that isn’t understood. The boys are constantly given gifts by our hospice providers, sometimes I skip to the front of the pharmacy line**, specialist referrals happen quickly, my daughter gets far better care from doctors than my sons and other typical kids, and we are even eligible for financial subsidies from the government, and respite care (like specialized babysitting) from our insurance. I get that there’s a moment these things seem unfair, there are tons of families out there who would benefit from them, why us?

We get these things because our daughter has a limited life expectancy. We get them because all 5 of us are in this mess together and our boys often take back seat while they tag along to appointment after appointment and are threatened not to touch anything. “Docker poinment” (doctor appointment) is now one of Batman’s most frequently used phrases because he asks if that’s where we’re going. He remembers that I typically buy him a snack while at the military hospital and he’ll fuss if I don’t. They even know when we go to a new clinic and they ask me why. So yes, my sons deserve something special.

We are eligible for subsidies and respite care because the life we live now will not change. We will always buy diapers for our daughter, however long she lives. We will always need a babysitter that knows how to use the feeding pump and give meds. I will never be able to work a traditional job because of how time consuming Wonder Woman’s care and appointments are, not to mention that I can’t imagine leaving my medically fragile child every single day. These subsides exist because my daughter will always need 24/7 care. If we weren’t her adoptive family, she would find this care at a government institution.

I will always worry excessively if my daughter gets a cold. I will worry if she sleeps too much. I will worry when her temperature fluctuates. I will worry when she does anything out of the norm, but what’s normal? I will worry when she’s inconsolable, I will worry when she’s too quiet. I’ve listened to her cry so often in her life that now that she’s a bit more calm I hear phantom cries. We became so attuned to her crying that now we imagine it. I worry when I don’t worry because I’m worried I’ve gotten lax and missed something. Not a soul crushing worry that is unbiblical, but a high alert worry that brings a stress that doesn’t end because there’s always something new to pay attention to. Our life, her life, can change in an instant.

The Ugly

Sometimes I wake up and wonder why she’s sleeping so long, then stop and decide if I should check on her and risk waking her up. What if she’s dead? Is my world about to fall apart?  Or the doctor mentions the words “neurologic decline” in passing and I lock on to it and can barely remember anything else from our 90 minute appointment, though I know that many more positive things were said. It’s still rolling in my head a week later. I don’t question spending way too much money to take our family to Disney World even though there are so many more ‘responsible’ things we need to take care of, but what if this is the only chance? Can I live with the regret of not going? If I take her and then she passes will Disney always be sad? If I don’t take her and she passes will Disney always be sad? How many of the things that we do are going to become tainted by sorrow one day? What about when we move and leave this all behind? Is it worse to be surrounded by a space that was hers or to be surrounded by one that never was?

The hardest part in all of this is that this is how our life will be. Until one day it’s not. And that’s the worst.

There I go, dealing with all the bad. It comes out a lot in the blog because I want so badly to be understood, and this is such a huge part of our lives. Sorrow and grief and anticipated grief have woven their way into my fabric, however much I would like to cover myself in denial. Then there’s the other side. It’s like a double helix, two strands inextricably woven together to form my DNA. Joy, sorrow, hope, fear, the base pairs of myself.

The Good

In the misery and exhaustion, in the moments when I’ve been laid so low that I can hardly find myself, I find God. “God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us.” Acts 17: 27. It’s beautiful and worth it.

In my times that I’ve struggled, that we as a family have struggled, we’ve been given gifts and small tokens to remind us that we’re not alone. We’ve been lifted up in prayer by so many people that we’ve seen an answer to our prayers even when we couldn’t voice them ourselves.

When Wonder Woman connects with me, when we lock eyes and she’s present, it’s one of the most indescribable experiences. The joy and happiness I feel, the love, it feels like the warm sun on your face.

It’s the forced perspective of taking life one day at a time. Of giving ourselves the grace to let go of the busyness and the unnecessary stress, and focus on the things that matter to us. Strawberry picking, family vacations, bubbles, lunch at Dad’s work, more things that bring us joy and less obligation. 

The Miraculous

Watching the perfectly innocent and selfless love of my children for each other. The extreme beauty in how the boys accept her exactly for who she is without expectation or judgment. Oh God to learn to love like they do. I’m thankful to be a witness.

Through all of this I’ve been humbled and have learned what hope really is. Surviving as the stay at home parent these last few months has been a struggle. To deal with depression on top of it has been nearly impossible. I can only say that it is God who has sustained me. He’s the one who has shown me my failures. Not in condemnation or to let me wallow in self pity and criticism, but to leave room for me to better understand the fullness of God’s love and appreciate the mercy I find new every morning. It has been freeing to continually find forgiveness and grace. “Therefore, I tell you, her many sins have been forgiven–as her great love has shown. But whoever has been forgiven little loves little.” Luke 7:47.

As the depression I faced has finally started to abate I’m getting to see myself again. Unfortunately, followed on the heels of this has been some health issues of mine bringing about extreme fatigue and other issues that have continued to make parenting difficult (well, more difficult). But even this I am thankful for, because it’s humbling. God isn’t going to give me a chance to try this parenting thing alone because He knows I would fail. He’s keeping me humble and it’s His mercy toward me.

Hope is the other miracle I live. Real hope is incredibly tangible. I’m not talking about the kind where I hope I win the lottery but don’t even buy a ticket (by the way, I do hope I win the lottery). I’m talking about the kind of hope that is a choice. The kind that looks into our future and not only sees the good possibilities, but confronts the bad as well. The kind of hope that understands what could happen and doesn’t shy away but accepts it, processes it, and then chooses hope. As the top half of my blog made clear, this is hard. Our present is hard, our future will be harder.

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28

 “We have this hope as an anchor for the soul, firm and secure.” Hebrews 6:19a That’s what I choose.

**It only happened once, and will probably never happen again, but getting in the fast line at the pharmacy is glorious, especially because I’m not a very big fan of that place.