I read this beautiful post this morning, and after I finished ugly-crying, I had so many thoughts swirling around in my mind. I had to get them out before they got all tangled up together and eventually lost, because that’s what tends to happen when I ignore the urge to write. And while I didn’t experience exactly what’s described in this post, I do understand the heartbreak of losing a pregnancy.

I also understand what it’s like to feel alone–I spent hours of my labor with Eli alone in triage because they couldn’t get a good reading on his heart rate, and because it was the early hours of Christmas morning and we were in a bind–my husband stayed with our daughter in the waiting area until one of the best friends I’ve ever known woke up and made my girl a member of her family that day. I remember wanting to plead with the nurses every time they walked out to please stay with me. I knew they had other patients, but didn’t they see I was alone? And didn’t they know how scary it was to be alone after a difficult pregnancy when you’ve just been told your baby’s heart rate is doing the opposite of what it should with every contraction? But each time they walked out, and I found myself alone again, hoping the next time they came back they would be moving me to labor and delivery. They needed a good 20-minute reading on his heart rate, and in order to get it, they needed me to stay perfectly still through my contractions. While I had planned to give birth without an epidural, I was hoping and praying they would just bring in an anesthesiologist and help me out some. I screamed into a pillow, alone, trying not to writhe in pain. I waited.

I know what it’s like to be told the birth is not going to go as you had hoped, and instead of walking around and using the tub and the medicine ball, you’re going to be confined to a bed and connected to countless monitors. That they’re even going to connect your baby to a monitor. Internally. By his scalp. Using a special needle. And I know what it’s like to want to name your baby after the anesthesiologist that finally shows up when you’ve been moved from triage to labor and delivery, and you finally resign to getting the damned epidural–I know what it’s like to accept that you’ll never be able to be still long enough for a good reading unless they dull the pain. And if you’re not going to be able to get out of the bed, then you might as well have some relief. I know what it’s like to be moved into various positions, to have my bed tilted, to be at the mercy of strangers as the medical staff tries to coax your baby into cooperating with this birthing business. Gravity works.

I know what it’s like to be told it’s finally time to push, but being terrified that when you do, your baby’s heart rate will plummet from the stress. And I know what it’s like to finally hear those beautiful little cries, to be told “it’s a boy,” to hold my sweet baby in my arms, alive. And then to be told–in an amazingly loving and compassionate way–that he has Down syndrome. And a life-threatening bowel condition. For the record, when you’re told your baby has a life-threatening condition, Down syndrome doesn’t really matter much.

I know what it’s like to be trapped in a hospital bed when the transport team shows up in an ambulance the size of a semi-truck to take your baby just a few blocks. I know what it’s like to have them all standing there, heads lowered, speaking softly and kindly to you, telling you to take some time with your baby before they put him in the enormous isolette, where he will be swallowed by wires and monitors and its sheer size. They wait solemnly because they’ve seen it before and they can’t make you any promises–sometimes these babies don’t make it, and they want you to be able to hold him and kiss him and breathe him in before they whisk him away.

I know what it’s like to be taken to the recovery ward without my baby. To hear the cries of the other newborns, and then the silence as their mothers and fathers soothe them and feed them and hold them. I know what it’s like to ache for my baby, to literally feel pain in my chest because he was just in my belly and now he’s not even in the same building. I know what it’s like for your awesome doctor to so generously write you a pass to leave the hospital for a few hours–making you promise, of course, that you won’t walk but rather use a wheelchair, and knowing full well that you would run to him if given the chance–so you can visit your son at his hospital that night. I know what it’s like to be ushered into the NICU, a battered and broken woman, and taken to your baby’s bedside, where you find him so still, with so many wires and monitors, in a pod surrounded by other sick babies and their scared parents. And I know what it’s like to be asked if you want to hold your son and feeling like your heart will beat right out of your chest because YES! YES, of course you want to hold your son.

I know what it’s like for those precious few hours to run out, to have to return to the hospital where you’ll spend the night so that you can be monitored too. I also know what it’s like for the nurses to bend the rules so your mom and stepdad can both stay with you that night. I know what it’s like to sleep very little, feeling a million miles away from your husband, who is with your baby, and feeling anxious anticipation for the morning, when you will finally be discharged and be able to be with your baby again. And I know what’s it like to be afraid of what comes next–surgeries, the first when he is barely 24 hours old; appointments with multiple therapists so he can learn to feed, first from a syringe and then from a tiny bottle; consultations with various specialists and discussions about the best course of treatment for your precious little man; complications that arise after surgery, and all that comes with recovering from that; preparing to go home only to be told it’s not time yet.

But I also know what it’s like to finally go home with your baby, a little unsure what the future holds, but so SO thankful he’s made it this far. And I know what it’s like to remember how not so long ago, you really didn’t know if you’d be bringing your baby home. And that, my friends, is why I will never mourn a Down syndrome diagnosis. It’s why I’ll never question or judge when a baby is born to unmarried parents. Why I’ll never call a baby a mistake. Never. My daughter was born before my husband and I were married. I’m so glad we didn’t wait to start having kids. I have a gorgeous daughter and I am over the moon with her–she is a gift.

And our son, with Down syndrome–I’m so thankful to have him. Because he’s here. He’s alive. Full of life, in fact. I won’t be sad because of milestones that come later (or maybe not at all)–those things that I worried so much about with my daughter suddenly don’t seem so important when you remember how fragile life is and how you’re lucky to have this little person with you at all. I’ve heard people call kids like my son a burden, but I don’t buy it–he is not, and never will be, a burden.

I’ve heard people say I’ll change my mind when he’s grown–what if he can’t be independent? What if he needs lifelong care? Won’t he be a burden then? Won’t it be a burden when my friends are traveling and enjoying their lives with their kids all grown, but I’m still caring for my son? No. No, that won’t be a burden. If he needs my lifelong care, it will be my privilege to provide it, just like I would be honored to care for my husband if he falls ill, or my daughter if she faces a devastating diagnosis someday. I don’t know when or how we stopped believing that we should take care of each other, but isn’t that kind of compassion supposed to be the hallmark of a civilized society?

In his few short years, my son–just like my daughter–has already given me a lifetime of happiness. I see similar sentiments from my friends on social media. We post about how much we love our kids, how we wish they wouldn’t grow up so fast. We say things like “Don’t blink” and we wish we could keep them little forever. And so I just don’t think we can speak of time passing as bittersweet, and lament how quickly our children grow and leave us, while simultaneously cursing the child that might require extended care. Especially when there are mothers and fathers whose arms are empty, parents whose ache for their lost children runs so deep, parents that would give anything to have a baby. How could I complain about an extra chromosome when I have a perfectly gorgeous little boy to love? I couldn’t. I can’t. And I don’t. This life is so good. So. Good. Maybe not what I planned, but that’s ok–it’s been a much-needed lesson for me, that I don’t have to be in control of everything. That my life doesn’t have to go according to plan. And that there can be so much joy and beauty in that which first caused us fear or heartbreak. So much joy. So much.







4 thoughts on “Joy.

  1. We have a wonderful 16yr old son who has Down syndrome too. We learned of his diagnosis before he was born and I will never forget what his wonderful pediatrician-to-be told me. He said there are many things worse than Down syndrome and at least you have your son when so many parents have empty arms. Daniel is a blessing from God. Like you said, not what we expected and not what we might have chosen, but I can’t imagine our lives without him. God bless you and your family!

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