I was lost in my thoughts and staring out the window of the Ronald McDonald House (RMH). For those of you who have never lived in a RMH before, I sincerely hope that you never have to. RMH is a guest house for families that have children in Intensive Care at the hospital. This was our second RMH room in a week as our newborn son bounced from hospital to hospital, fighting to live.
There’s an indescribable loneliness involved with that degree of helplessness. My husband was working and staying at our house with our 17-month-old daughter during the week, so I spent most days either sitting in the NICU or sitting in my guest room. I had become eerily familiar with the view from my room. Although the employees and volunteers at Ronald McDonald did everything they could to make my room “homey”, there’s something amiss at the sight of a cold, brick hospital looming outside.
So there I sat in my dark and lonely thoughts. Where will we bury him? Who will get his organs? Did we double check that we can even donate his organs now that he’s had so many blood transfusions? What if I’d insisted on progesterone shots? What if I’d insisted on steroid shots? I thought there was a less than 5% chance anything could go wrong. The darkness inside the mind is, well, desperate, to put it mildly.
As I followed my thoughts further and further down the rabbit hole, the sound of an email coming in snapped me back into reality. My phone that used to buzz and ding primarily for work related inquiries was suddenly a hub of activity for concerned family and friends. So an email coming in wasn’t unusual, but this email was different. Embedded within words of empathy was a phrase that touched me so deeply that it has become the cornerstone for all my suffering. It simply read, “What has been asked of you is tremendous.”
There was no call to action or an attempt to mitigate the pain. My friend wasn’t trying to give me hope or somehow make it okay. It was an acknowledgement that what was happening royally sucked. It was permission to be in pain and to feel grief. Our culture has a tendency to look for solutions for everything and to try and find a bright side to all bad things. And while I wholeheartedly agree that good things do often come from suffering, the suffering is often unbearable at the time. I appreciated everyone who took time to reach out to my family during those days, but there’s just something about the cliché “his suffering will be gone if he does pass” that stings so bitterly when you’re looking at your child through a Plexiglas box with tubes sticking out all over his tiny body. The knowledge that someone will “be in a better place” or “have no more suffering” may be true, but it doesn’t fill the lungs with air that are gasping to breathe.
Permission. Friend, you can feel this way. You can ask why. You can hurt. What has been asked of you is tremendous. Whether it’s watching your child dying, the pain of burying a parent or spouse, the loss of your health, infertility or the crumbling of a marriage that once held such hope, it’s okay to suffer; to just exist for the moment. The coping and healing that eventually must begin does not have to be now.
When I contemplate something tremendous, I think of a mountain or other such great obstacle. There is a progression that must be followed in order to conquer it. You cannot start at the top of a mountain and say that you conquered it. You must scale. Likewise, you cannot stand at the top of a mountain and look down at others who are still climbing and expect them to be where you are at. In that same scope of thought, not every mountain has the same enormity as the next. How can I compare watching my child dying to the mother in the NICU who’s holding her dead child? I don’t understand her pain and I never will because it is specific to her. What was asked of her was tremendous.
I also cannot compare how I react to how another person reacts in a similar situation. I remember sitting at the funeral of a beautiful 5-month-old baby who had died of SIDS. My daughter was 4 months old at the time so the death of this little baby terrified me and made me weep bitterly for his parents. His mother sent an email out thanking everyone for their support during their suffering. In it, she said “while our prayers were not answered, another mother’s prayers were.” They had donated their son’s organs and his organs had already been transplanted into another baby. She was gracious and reassuring. As my husband and I discussed donating our son’s organs, that sentence kept running through my head. And I hated it. I deliberately refused to allow that grace into my heart. And I felt guilty about it. I compared myself to that mother. Looking back at the situation, there was no comparison to be made. I don’t know how she felt as she held her dying child. What was asked of her was tremendous.
That phrase was sent to me nearly 2 years ago and the memories of my son in the NICU are distant, but ever-still poignant. And when I look into my son’s eyes there is a gratefulness that I feel as I stand on the top of that mountain. But now I climb a new one. A different one. And this one, too, is tremendous.
A chronic illness is met with grief. A dear friend recently said to me, “It’s a loss, Jenny. All loss causes grief.” And she was correct. There is so much loss when you have a chronic illness. There’s the loss of both freedom and planning. “Bad” days pop up at the most inopportune times. There’s the loss of ability and strength. There’s the loss of feeling well. Those dark thoughts begin to creep in. What if I hadn’t done this or done that? How come that magic diet worked for her but not me? If I feel half way decent tomorrow, then I’m going to get 10 projects done. You begin to travel down that rabbit hole. And it’s lonely down there because, let’s face it, rabbits live in rabbit holes. People don’t.
In the suffering of this grief, I have yet again found deep comfort in the phrase “what has been asked of you is tremendous.” Permission. I can be sad about not feeling well. I can be sad that I missed a lot of fun things with my kids this summer. I can hurt. I will climb this mountain as well, but I’m not going to pretend it doesn’t exist. It does.
We all have our own sufferings. They are tremendous in their own right, and it’s okay to just grieve for a while. Contrary to the “we must fix it now” culture, we can find peace in knowing that “what has been asked of you is tremendous.”