meet ulysses

ulyhat

It’s been more than a year since I blogged. I didn’t know if I’d ever return here, the path became so weed choked I had all but forgotten about it all together. I couldn’t remember the password, had to make a new bookmark. I am pulling up ivy with a gloved hand, uncovering the old little place where I would share scraps of myself.

And I wish I was making a creative and mindful return to public writing for some quasi-artistic reason, like national blogging month or whatever. I wish this was just a silly challenge to reacquaint myself with having a blogging voice, for reasons of frivolity and self-absorbtion.

I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. Just the beginning of a story, really.

But does the story about my new son start the day he was born? The week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of which did not remain viable?

I think to get the most understanding of who this boy is, what he means to us, I have to back up even more.

My older children are almost thirteen and nearly six. I joke about the seven year age gap being one of the “best kept secrets” of family planning, but there really wasn’t any planning involved. The big space, while wonderfully beneficial and I wouldn’t change it now for anything, wasn’t the result of careful decision making, but rather inexplicable secondary infertility. I always imagined myself as the wisecracking mom to a passel of feisty kids. I wanted the rowdy chaos of a big family. But my quirky biology didn’t comply.

I lost a pregnancy early in the second trimester, about four and a half years ago. I’ve had a number of very early miscarriages, which were disappointing, but nothing like the devastation of losing one after crossing into the proverbial “safe zone”. That loss resulted in lingering complications. It was a difficult time to be in my own body.

So when I found myself surprisingly expecting back in the early Spring of this year, it was hard to believe. It was hard to tell myself that it was true, let alone to tell anyone else. It was too fantastic and I felt like maybe I could protect the idea of it and make it stay real somehow by not breathing it aloud to others. And then I started bleeding. And I bled constantly for over a month, during which I learned I was losing two tiny embryos. How ironic that years of wonky fertility would find me knocked up spontaneously with three, each in a separate sac? But the irony turned around on itself, like a mobius strip, and it was a pregnancy loss after all. There were weeks of not knowing if it would be a total loss or not. When the bleeding stopped, there was one Scrappy baby, holding on in there.

And suddenly, I was the caretaker of this tremendous and wonderful news. It was too unreal and too thrilling to me to want to share the news. How could I tell anyone that I was pregnant and have them possibly understand what that could mean to me? Of course, such knowledge comes up organically, in conversations and double-takes (is she or isn’t she?), and it didn’t stay my sweet secret for long. But, even once the word started getting out, I didn’t make a deal of it. I didn’t tell facebook and I didn’t make any grand announcements. You’d think if I was so happy about it, I’d want to sing a song from the roof and do a mass postcard mailing, but it was just too precious to expect anyone else to appreciate, and I felt very protective.

Once the high drama of the first trimester passed, it was a long dull slog through ill-fitting pants and raspberry leaf tea and heartburn. I had delightfully warm and chatty visits with my homebirth midwife; we organized the house and checked off an industrious home improvement To Do list; there was only completely glad anticipation.

I had what I hoped would be my last prenatal appointment on November 2nd, which was also my “due date”. My midwife didn’t feel certain about the baby’s position and had me zip down to an imaging clinic for a quick ultrasound. I had a lot of anxiety on the drive. I was down to the wire, for sure, and didn’t have any time to flip a breech baby.

The ultrasound tech saw right away that baby was head up. I sighed and tried to remain cool. I’ve got this, I thought. Maybe the baby won’t have the exact birth we’d been planning, but it’ll be ok. And then the tech asked me to wait in the room. I was confused by this, and called my husband. “Baby’s breech” I told him when he answered, “but it’s a baby in there, not, like a cat or something. I saw the head and I think the hands.” And then he asked me, “the right number of fingers?” And then I had to hang up quickly, the tech was coming back, with someone else.

I was introduced, in that small dark ultrasound room, to an older man, the radiologist. He shook my hand and then blurted out, “your baby has multiple abnormalities.”

He said the baby had deformed limbs, missing fingers, probably missing other parts. I could barely hear him from this whooshing sound suddenly throbbing in my head. I stood up and grabbed my bag. “I don’t know the words to say” I remember saying. And that’s all I said. I walked out of the room, walked past the waiting area and said to my big girl, contentedly reading a book by a window, “we’re leaving now” as I walked out the door.

I know by the time I got into the car I was crying. I know that I tried explaining to my daughter why I was crying, except I didn’t know. I know that I called my husband and somehow told him. I know that my midwife called me and told me not to drive myself home. I know that I told her I’d be fine. I’m fine. It’s fine. Fine. I know that I kept telling myself I can’t crash the car because I have to take care of my daughter. I know that by the time I got home, about forty-five minutes away, my husband was also there. I know that we left almost immediately to the city, where somehow I’d been fast-tracked into an appointment at a maternal fetal medicine clinic for a level II ultrasound and an amniocentesis. I know that I cried all the way there.

What happened after that is we learned this baby we’d been expecting all along had “significant” and “profound” birth defects, in and out. We learned he was a boy. We learned that there are syndromes that are considered “incompatible with life”.

Two days after that appointment, we had a consultation with a neonatologist and a meeting with the hospital ethics committee. Maybe you already knew that hospitals have ethics committees, but I did not. By this time, our baby’s file had been shared with a multitude of specialists. The neonatologist told us that she did not think it would be unreasonable for us to proceed with an out of hospital birth. By which she meant, there is not a lot they can do for this baby, so maybe you just want to spend his last moments peacefully at home.

We were braced for the worst. The best was still very bad. Based on his rare and complex issues, all best guesses determined that the likelihood of him having severe neurological impairment was very, very high. Would he be able to eat? Breathe? Hear?

The ethics committee gave us their veritable stamp of approval, entrusting us wholly with all decisions. We discussed how long we would continue support, and what kind of support. I learned the phrase “palliative care”.

There was one week in between my world falling apart and his birth. One week of such deep despair I won’t even begin to describe it. One week of waiting for him to be born so he could die and we could say goodbye. One week of listening to Pearl Jam’s Just Breathe over and over and over again, like some kind of prayer.

Among our ethics committee approved plan was my insistence on avoiding a c-section. I don’t suppose that the hospital sees a lot of vaginal breech births. Probably fewer pitocin induced vaginal breech births. I also was firm about refusing fetal monitoring. Did I want to hear the heartbeat of a baby who would not live? No. And while my other babies were born triumphantly without pain relief of any kind, I assumed I would need something to get me through this dreadful thing I had to do. In the end, though, the drug made labor so hard and fast and intense, I was out of my mind with the hurt of it all and did not have time nor wits to request pain medication. I say that not out of pride, for there is nothing to be proud about what was the darkest moment of my life, but just to illustrate what an unusual birth it was. Everything about this boy has been unusual.

There was no tender welcoming a new life into the world. He was zipped across the hall, neonatologist and nicu nurses and cardiologist and geneticist and who the hell else at the ready. I turned my head away and didn’t even want to see him go.

We heard him cry. It was a confusing sound. We thought he would need intubation. It was assumed that his heart defect would prohibit his lungs from working efficiently. But he was crying.

And they brought him back to me. And they said he was healthy.

And I held his tiny broken body and I nursed him and he latched on better than my other babies latched on as newborns. And I cried. I cried because he wasn’t dead and I cried because he was alive. No one mentioned the possibility of leaving the hospital with a disabled baby. How do you even prepare for such a thing? There is no preparation. There is only disbelief.

His stay in the NICU was brief, just over a day, for monitoring. This little champ maintained a near perfect blood oxygen level, despite his heart defect. He’ll need surgery sooner than later to repair his broken heart. The pediatric cardiologist explained it as a common congenital defect, a routine surgery. But in my world, there is nothing common or routine about open heart surgery for a brand new baby. Prior to this roller coaster, the most serious medical situation my family experienced was that time my daughter had stitches by her eye eleven years ago. How’s that for contrast?

How do I tell you about this baby? I do not want the sum of him represented by what he is not, what he is missing, the challenges that await us. But what else is there yet?

His issues are not minor. His bilateral leg condition alone occurs approximately once in every one million live births. He will never walk without serious, invasive surgeries and devices. Amputations. Prostheses. Do you know what a mindfuck it is to hear such words about a newborn? Can you feel the weight of this?

My big boy, the bouncy one, the easy-going one, the boy with the casual shrug of his shoulders, mentions his baby brother’s hands like it’s the most obvious, simple thing ever. “He only has three fingers on one hand,” he says, “and two fingers on the other one.” So matter of fact. No catch in his throat. No mourning the loss of future handprint turkeys or making the motions to so many kid songs. I’m not there yet. I’ve been looking at and loving on those tiny misformed hands for fourteen days now and it’s still hard for me. Even as they tell me “it’s just mechanics” and “he’ll figure it out” and other encouraging platitudes.

I am usually so guarded and private. It’s out of character for me to share so much here, even as I’ve intentionally omitted specific diagnoses (a grouping of several, with as yet no umbrella catch-all for them all together). But everything is different now.  Since we’ve been home from the hospital, I’ve been hiding. A few people have met this surprising baby, but we haven’t yet left the house, save for doctor appointments. I can’t hide indefinitely. I will have to be brave and bold enough to withstand whatever questions and curiousness occurs when the world meets Ulysses.

He looks an awful lot like his big sister did as a newborn. Same deep eyes, same frowny mouth. When he’s all wrapped up in a blanket, you would never know that he has such serious things going on. And I can assure you that he does not know. Everything else about him is just what you’d expect from any newly born babe. He squirms and fusses. He makes those mysterious sleep smiles. He flails his arms when a loud sound startles him. His brain seems normal. Everything else about him seems normal.

There is nothing normal about our life now.

We have so many appointments scheduled. He has already had more doctors examine him than maybe my other two children, myself and my husband have ever had, all together. I don’t know how to get used to living such a highly medically managed lifestyle.

It’s been just three weeks since everything changed. So much information to process in such a short amount of time. I’ve blamed myself incessantly, even as I know there was nothing I did or did not do to cause this. That is the absolute truth, and yet, I worry that people will wonder. . . of course they will. People with murky knowledge of genetics, people who have grown lazy in their own good fortune, people who can’t possibly know how wanted and treasured this little baby has been all along.

Everyone’s delighted that he survived the birth, that he is thriving. And yes! What a great outcome! But now what?

I read this Mary Oliver poem the other day. Every word she writes is like a sermon to my soul, such messages of hope and truth and being. I don’t know what’s next. I don’t dare expect anything. I’ve certainly learned how little any of our planning really matters at all (and so many who pat themselves on the back for being good planners completely miss the crucial role that happenstance plays in all of our lives). We are intimidated by what is ahead. We are trying desperately to experience the fullness of what we have right now.

I Ask Percy How I Should Live My Life

Love, love, love, says Percy.

And hurry as fast as you can

along the shining beach, or the rubble, or the dust.

Then, go to sleep.

Give up your body heat, your beating heart.

Then, trust.

-mary oliver.

Advertisements
Categories: Uncategorized | 29 Comments

Post navigation

29 thoughts on “meet ulysses

  1. I wish that I had something profound or wise or comforting to say, something as beautifully written as what you have written here. I don’t. I have no foundation for which to grasp what you are going through. I can try to imagine, but imagining isn’t real and I am sure that I can’t really understand. I am trying to say that I don’t want to patronize and say I understand because I haven’t walked the path and so I don’t.

    But, I *do* have hugs and love and patience and more for new Ulysses and you and the rest. I do understand the instinct to hide away, too. But I’m glad you’re coming out. Someday it will all be just what is — not that it will be easier or less, just that it won’t inspire such intense scrutiny, and I know for myself that less scrutiny is always better.

    Welcome back,

    ~Angela~

  2. one day i hope to meet him in person. kiss him & gaze at the beautiful wonder child that is Ulysses.

    i love you April. i am extremely moved by your strength, honesty, vulnerability. by the beginning of Ulysses’ story. by Gilly’s childlike view which is so true & real.

    thank you for sharing his story, your story, your family, you.

  3. Obviously I saw the flickr photo before reading this post, and I feel like my comment seemed so generic and trite.

    I just want to say, peace be with you, your spirit, your family, this tiny boy. I have no idea what you are about to navigate, I do not know what it is like, but I do know about worry, and stress, and despair, and also about redemption, and peace, and joy. It is those things I will be praying for, for you, for you husband, for your older children, and for Ulysses.

    Blessings and love be with you.

    Grace

  4. Deb @ Green V-Neck

    I have been with you, at least virtually, through every step of this journey, but this post moved me beyond any other. Your love for Ulysses is in every word, as is your grieving and determination, and that is all as it should be. You are amazing and so is he. XO.

  5. Deb @ Green V-Neck

    Oh! And I meant to post this first….he is SO adorable!!! That little tucked-in lip just slays me. As beautiful as your other kiddos.

  6. Omy

    Thank you for sharing your story here, April, and the story of your newest babe. I am grateful for your words, grateful you are sharing whatever parts of your story feel comfortable for you to share.

  7. i too, have no comforting or profound words to say. as always, you are right Mary Oliver says it best. i wish as well that it would be more peaceful circumstance that would draw you back into this blogging world; i feel for you that it is not.

    i am amazed by what you have written here. that you come across so clear and so honest with these words. i suppose you have had a bit to experience and form them by now. you are writing with such truth and i see some strength in your vulnerability. i see fire behind your fear.

    we take for granted our health, the health of our babes. a reminder, yes, to cherish not only what we’ve been given, but each moment it brings us.

    i have nothing to give you. but i give you my wish for strength, for some light and some peaceful moments to surround you, to hold you and all of your family as you make your way.

    you may be writing this for your own personal reasons, but you may also be sharing it for someone else to find and hold onto.

    we may have never met, but i will hold you all in my thoughts and my meditations as you take this journey.

  8. Angie Morrill

    it is good to read your words. how can i feel the weight of it? he is too small, it’s too big to comprehend outside of it. he is beautiful and he has a wonderful family. we’ll see. much love!

  9. Much love to you and yours on this thanksgiving eve. Thank you for sharing the beautiful pic of your beautiful boy and keeping us updated on what is happening with you all.

    (p.s. You are such a wonderful writer.)

  10. This whole post is beautifully honest and filled with words of love and pain. I don’t know what you are going through, because I’ve never had to deal with something so difficult but I’m so glad that Ulysses is here and part of your family.

  11. I don’t know what to say except that I am amazed by your strength and equally saddened that you need it. He is a beautiful baby. xoxo

  12. Pingback: Is there any room for women in this earth who are infertile?

  13. Petra

    April, thank you for sharing your story. It was an act of true courage to be willing to be so open. Ulysses story IS important. He is a Miracle. He is Beautiful. He is Love. He is Innocence. He is a reminder of all THAT IS – “Right Here… Right Now”. That planning for things to be a “certain” way does not always happen. He is a reminder for us to “Be Here Now” and appreciate life as it is in every moment. I know I’ve said it before and I truly believe… that we will all have a LOT to learn from him. He is an amazing soul and I’m already so grateful for the things he has brought to light in my own life. Sending Love to your family… wishing you Peace this Holiday. I know that Ulysses and your family will be in my thoughts as I give thanks to the greatness in my life.

  14. Petra

    Oops… I didn’t finish my last sentence.

    “I know that Ulysses and your family will be in my thoughts as I give thanks to the greatness in my life.” THE GREATNESS OF FRIENDS LIKE YOU!

  15. I thank you for sharing your/his story. I am thinking of all of you during this time. Ulysses is beautiful just the way he is and I LOVE his name. Long time no speak friend but I think of you often. That road between medical and spiritual things is often preplexing to me-and sometimes, there are just no answers; or maybe there are but we cannot comprehend them in the moment. I know that his life long or short will be blessed with your wonderful family. Lots of love and hugs mama. xo. Susannah

  16. Sarah Bradley

    I love you April.
    You are so fucking fierce and amazing.
    Thank you for sharing your journey with us.

  17. Lisa N.

    Wow April! What a wonderful sharing of yourself and your family and Ulysses’ start of life, and so beautifully written. I had to read this in parts because it was too hard to take in all at once (and a tiny part of all you have had to take in, in such a short amount of time). He is so handsome, and lucky to be part of such a great and loving family. I loved the part of him latching better than your other two, that’s about where I started crying the first time! Yes, you will all learn to adapt and he will grow and learn to use what he has, just like other children, he just won’t be doing things exactly the same. But however he learns to do what his brain is compelled to do, he will be proud just like other babies. But for now, your vast amount of strength will carry you forward and you will do for him whatever you need to do. He is definitely a blessing!

    Warm thoughts to you and your family!

  18. Sue Berger

    Thank you for sharing this all. It’s hard to make sense of, when you think of the future. I guess all there is for any of us is the present. I am thankful that he is here in the present. And I’ll continue to send you strength and love for the days ahead.

  19. Faith

    That poem is everything. Thank you for sharing this experience and journey with us. Your son is an amazingly beautiful testament to life. The road will definitely be rocky and hard but I hope you will always look up from your struggles and see the sunshine beyond the clouds and the rainbows after the storm. Much love.

  20. kblackstone444

    I saw your story on MDC, followed the links…

    I’m not sure how to put into words what I’d like to say. I can’t say, “I’m sorry your son is different”, because I’m not- he may be “different”, but he is who he was meant to be. I can’t imagine having to wrap my mind around having a child who’s not what I expected him to be, and I can’t imagine how completely overwhelming it must be, to wonder how his life will turn out. But I can tell you that I, too, have a “different” child, only in other ways. My son is “different” mentally- nobody can tell by looking at him, and although sometimes it does make his, and my, life harder, I can’t imagine my own son being completely “normal”, by society’s standards, because then he wouldn’t be the son I know and love. The same will be with your new son- if he was born any other way, he would not be that same little baby you’re getting to know and love.

    My first thought when seeing your picture of Ulysses was, “He’s beautiful, absolutely beautiful.” He is. He’s a beautiful blessing and you’re a strong, strong Mama, exactly who he needs for his Mama. Enjoy him. 🙂

  21. chris

    i am amazed by you. by a woman so fierce and deep and soft, who creates and nurtures and does what needs to be done. ever-brilliantly.
    he’s beautiful. absolutely.
    thank you for being you. for writing this. and, for sharing it with me. noah, lily and i were talking about “pink pure” the other day. i still have it. you’re mothering is inspiring and, i hope, supported as you discover and adjust to this baby’s particular set of challenges. i also hope you keep writing.
    respectfully and with love,
    chris

  22. Julie Anita

    So, so beautiful. Beautiful boy, beautiful family, beautiful words.

  23. stella

    Followed here too from the mdc, what you wrote is beautiful and thank you for sharing it out loud. You were in my heart and it is so amazing to read now that you have HIM and he has YOU. That is what is and what needed to be. You sound like you will be all the more amazing from this.

  24. This can only be accomplished if we do not limit ourselves to what we have inherited but, instead, completely reconstruct it.

  25. April, I found you through the Support for Special Needs page and want to welcome you into a club none of us asked to join. Your writing is beautiful, honest and with a clarity I didn’t have when my daughter was born with a limb difference. Thank you for sharing and please know there are so many people out there who want to help support you. The fog of hormones compounded with appointment after appointment is so hard. Please keep doing what you’re doing. Writing is a gift and an amazing outlet. Ulysses is in my thoughts as are you as your family works so hard to help him grow and thrive – which he clearly is proving he can do.

  26. Oh goodness, he is wonderful. I am sitting here crying. Thank you for so openly sharing your thoughts and feelings. I found you via Miggy’s blog. I will keep you and your sweet family in mu thoughts and prayers, and I am wishing you much,much strength tomorrow.
    Love
    Miri

  27. Pingback: march on! « have a banner day!

  28. Danielle

    Hey April. I know you from the ectro group. I first want to say how absolutely adorable Mr. Ulysses is! The first time I saw his picture, I just smiled. I also want to tell you how much I can relate to what you are going through. I cried because there’s not many people who truly know the pain and devastation you go through. My daughter is missing digits on all 4 of her limbs. If you ever need to talk to someone or vent or whatever, you can email me. I have been writing a blog as well. Maybe it’s time to make it public. Thanks for sharing your story.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Create a free website or blog at WordPress.com.

%d bloggers like this: