I remember walking through the park with Anna shortly after she had Lennox and having a conversation with her about how difficult this journey has been. It wasn’t different from any other conversation we ever had as getting pregnant, being pregnant, and becoming parents were topics we discussed a bit too often. This particular day stands out to me because, I remember saying “I just can’t think of anything worse than having such a difficult time having a baby.” When I heard those words come out of my mouth I instantly regretted it, thinking, of course there are things that are worse. But to me, at that time, it did seem like the worst thing ever. It felt so cruel that the one thing I have always known that I wanted in my life still seemed so far away.
The day we found out we were expecting a baby coincided with an update from my nephrologist. On Wednesday night my doctor explained the 24-hour urine results….7 grams of protein detected. That’s the highest number since my diagnosis so needless to say I was incredibly disappointed.
This was a very powerful moment for me. Just a few hours earlier we were rejoicing in the news of being expectant parents and now I am filled with doubt. Wanting to tell my doctor that I just have to get better because we are expecting a baby in June. Here I am holding joy and deep fear at the same exact time.
Not 5 minutes later, Stephanie texted me and Jeffrey. A belly photo-4 weeks along! This would be the first of many, Stephanie emailing them weekly and making Wednesday our new favorite day of the week. When I received the photo, I was already in tears. Feeling scared and confused. Not understanding how this can be happening. Why things aren’t improving when I am doing everything I possibly can to get better. My tears of sadness turned to tears of joy and I texted them a photo back to show how overjoyed I was. I never shared everything that I was feeling in that moment until now.
I remember the exact moment last winter when I took off my ski boots to reveal an abnormal amount of swelling in my lower legs and calves. It was Saturday, February 17-my Dad’s birthday. From that moment, until I finally got my diagnosis on April 24, and since then, my perspective began to shift. My life changed. I began to change. So many concerns that I had, including the fear of “what if I cannot get pregnant again?” seemed almost trivial now.
I have always appreciated life. But when the thought of it potentially being cut short, or knowing that this could possibly be what I could die from, even if I am 100 years old when I do, well, it just brings “appreciation” to an entirely new level. And it creates, at least in me, a sense of urgency.
I began to feel this shift, to not waste another moment of my life and to press forward with the dreams that are in my heart. My sister, Tina always reminds me that “God doesn’t put a dream in your heart that can’t come true.” She must have told me that 10 times since my first miscarriage and it always made me feel better. Until this one time…when she said, “God doesn’t put a dream in your heart that can’t come true…in some way.” I got so stuck on “in some way” like “Are you friggin’ kidding me? what does that mean? IN SOME WAY??? I don’t think I have ever heard Joel Osteen say it quite like that!” I knew that I could get pregnant, and stay pregnant and nothing was going to take that dream away from me. Hearing her say that made me angry.
But the truth is, my beautiful sister was right. I just wasn’t ready to receive the message. I was so attached to the dream being ME birthing our children. ME getting pregnant easily. ME being given seats on the subway and being coddled by Jeffrey. ME being celebrated and experiencing what is supposed to be a glowing, magical, perfect time. The dreams were all focused on an ideal that I had and a way that I imagined it should be, not on being open and ready to mother, nurture and guide another human being through life-however that comes to be. In my darkest moments, I was even ashamed of our losses…They made me feel like less of a woman and inferior.
I was so stuck in the HOW it must happen that I was forgetting the WHAT and WHY. This wasn’t about me. What we want is to have children…to be parents…to grow our family. But, to think of my dreams not coming true in the exact way I imagined them, made me furious. I was carrying around this shadow of grief and shame that didn’t allow my heart to be open to possibility. I was operating with fear in my heart, not love. I wasn’t ready to accept the plan.
I certainly have my share of difficult days and I face fear with every doctors visit. I face it when I don’t recognize who’s calling me, thinking it might be my doctor calling with news. But, that’s the thing, I am really facing that fear. I am meeting it at the door. As Rumi says, “Welcome and entertain them all!” In facing that fear and the reality of my diagnosis, I am stronger and more courageous than I ever have been in my life. And I have opened myself up to my dream coming true…in some way. In a most beautiful way.
When Stephanie was laying down after the transfer I told her that to me this is even more special than my being pregnant and it all happening the way we assumed it would. It’s a hard thing to put into words. It’s just a feeling…and a knowing. God is so great. We are so lucky. This gift that she is giving us, is healing my heart. This diagnosis, and facing my fear, is healing my heart. I am more at peace in my body, mind and soul than I have ever been in my life.
A dream that felt so far away during that walk in the park, is now only 5 months away! When I look back on that day with Anna I almost don’t know the person that I was back then. And, what’s funny is that I would never say “I can’t think of anything worse than being diagnosed with kidney disease.” But if I did, I would also say “I can’t think of anything greater…”
THE GUEST HOUSE
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.
— Jelaluddin Rumi,
translation by Coleman Barks