Sunday, January 29, 2006

Stealth grief

Today during the coffee hour after our church service, an older man I'm very fond of approached me and said, "I was watching you during the service. I'm going to give you the same advice I give to my daughters when they need it: it's time to take a deep breath."

He didn't elaborate, and I didn't ask him to. I thanked him for the advice, and acknowledged its wisdom and timeliness. He told me it was the sort of wisdom that comes with age, and he smiled and walked away as my throat tightened and my eyes pooled with tears.

So there it was. I'd wondered where it was. I'd been fooling myself for the past few days into thinking that it must be packed away in a box marked "The Past," but apparently I'd been carrying it right out in the open the whole time.

I call it "stealth grief." It's the phase of grieving that gets the least amount of attention and airtime. It's what happens when the grief is no longer a gaping open wound that you couldn't hide if you wanted to, when you have gotten through the aching, screaming pain, and when the good days finally - and by far - outnumber the bad. It's stealthy because you don't always see it coming, and because it emerges in new and different ways that you don't always recognize.

At least that's how it happens for me. Sometimes I don't see it coming because it pops up out of the blue - like when I hear that Julia Roberts has given birth to healthy twins, or when a woman in her blissful first pregnancy asks me if an amniocentesis hurts, or when people talk about their children's bond as siblings. Other times, I know it might be coming because of a date on the calendar - Mother's Day, for example. Or January 27.

Eight years ago on January 27 I had a baby girl. She was born with severe spina bifida and hydrocephalus when I was about 18 weeks pregnant and she was too small to survive outside my body.

Seven years ago on January 27 I found out that I was pregnant again. I later found out that I was carrying twins, later that one of the twins had mild spina bifida and hydrocephalus, later that the affected twin had died at full-term in utero, and later that the surviving twin had autism.

As you might imagine, for the past eight years January has been a difficult month. At first, the grief was right there on the surface, easy to identify and impossible to conceal. I talked, I cried, I wrote, I read, and grieved and grieved and grieved until some time had passed and the open wound began to heal. But the subsequent Januaries have been trickier: I spend the better part of the month each year wondering how the anniversary will affect me this time. Will this be a wracking-sob year? Or a reflective-but-peaceful year? Or will this be a stealth year, when grief slips on a disguise and makes me think it's passed me by, only to jump out and grab me when I least expect it?

I never grieved Bud's autism in the way that I read about people grieving after getting a diagnosis. I understand what people experience - the "death" of the dream of the neurotypical child you thought you had, and the adjustment to the reality of the wonderfully complex child you actually have. Maybe it's because there was not a startling "moment of diagnosis" for Bud, but rather a slow-paced, evolutionary unfolding of it. I'm not sure. Whatever the reason, the autism itself has never been a source of grief for me.

Bud's diagnosis did affect me in a different way, though; it affected me in a three-strikes-and-you're-out-of-the-baby-making-business sort of way. When Bud's brother died, the fear of spina bifida was daunting. We suddenly went from having a 1 in 1000 risk of having a subsequent pregnancy affected by it to a 1 in 20 risk. The idea that the risk was too great to ever try again was overwhelming. For a while. But somewhere, on some level, there was a competing thought: 1 in 20 means that there is a 19 in 20 chance that a subsequent baby would not have spina bifida. That thought floated around through Bud's toddler years, and I imagined that a day would come when I would pull it down and have a good look at it.

Before that day arrived, we discovered that Bud had autism. Since then, the reality has set in: a subsequent baby has an increased risk of spina bifida and of autism. Bud needs all of the time and attention and care that we can muster already. We would struggle to have time and attention for another child, even if that child were healthy and neurotypical. And the chances are great that the child would not be.

Bud will be our only living child. I have known that for quite some time. Known it. But, it seems, that stealthy creature grief has been lurking in the shadows for a while, getting caught in my peripheral vision but ducking around corners right before I've turned around to get a better look, making me wonder if my imagination was getting the best of me and there was nothing out there after all, slowly getting closer until - WHAM.

Wham. Out of nowhere, someone in church calls to my attention the things I have chosen not to see, and I suddenly understand why the blogs that have resonated most with me recently have been the sad ones; I recognize that the tightness and ache in my neck and shoulders is probably not bursitis after all; I become aware of the sensation in my body I had not even acknowledged - the one that starts somewhere behind my eyes and travels down to about my navel and feels like a blend of being bone-weary tired and of getting stuck in mid-sigh, unable to take it back and unable to complete it.

It seems that in this stealth year - the one in which my 40th birthday looms large on the horizon - grief has slipped on a new identity. I am not specifically grieving the loss of my daughter or the loss of my son. Instead, I am grieving my long-imagined idea of family, the one in which I have a gaggle of children whom I adore, and who adore each other. I am grieving the relationship that Bud will never have with a sibling. I am grieving the presence of the one person who will always be there for him, even when his father and I can no longer be.

And yet, even as I grieve, I can find the pockets of comfort. I can see the ways that the babies I knew so briefly have shaped my life so completely. I recognize the role they play in making me a better mother to Bud, in helping me to appreciate things about him that I might otherwise forget to notice.

And I experience more frequently and more acutely, in those fuzzy moments between awake and asleep as I huddle together with my wolf pack, the comfort that comes from the absolute certainty that one-plus-one-plus-one equals five, that there is a warmth we have generated that extends far beyond us, that there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.

And so, I take the advice of my wise friend at church, and I breathe,


and out,

my inhales and exhales in harmony and counter-point with the rest of my wolf pack. My family. We breathe, together and apart, and we huddle closer as time passes and the calendar, once again, allows us to move forward into February.


Anonymous said...

i can't know your grief or experience but i have a version of my own after over a decade of infertility and finally the chance to become a mother in my 40s. i've tried but have been unable to get pregnant again and now have come to (almost) accept that fluffy will be our only child. bittersweet since we can give him so much this way but we can't give him a sibling. i also had an image of myself with my galloping climbing brood. i breath with you and thank you for this so so beautiful post.

Judy McCrary Koeppen MS SLP Sage Therapy said...

I just ran across your blog. I need to introduce myself. There are some startling similarities between us. I became pregnant 7 years ago and was surprised and delited to find out I had twins. At 5 months gestation we found out the girl (the other was a boy) had bilateral cystic kidneys and would not survive. She would die in utero or shortly after birth. At 38 weeks I was induced after 2 months of bedrest. Baby Mary lived thru the birth, strong girl, and died in our arms. The "healthy" twin was whipped off to the NICU. When he was 2, and I was pregnant for a 2nd time, I noticed his delays (I'm a speech therapist). Short version he has developmental delays across the board and some "autistic tendencies". Being pregnant again was very hard. My dtr, now 5, also had delays-but appears to have "caught up" with a lot of early intervention. On occasion I still grieve not having my "twin" experience. I had also always dreamed of having 3 kids. No more for us, the gene pool seems to tainted-and I am now 42. blog is called Breathe Deep. I wish you well.

Judy McCrary Koeppen MS SLP Sage Therapy said...

amiga again-
I forgot. I am also a coffee addict and my blog is:

not my blg said...

I know your grief. It visits me too, practically everyday. Last night, I was making some repairs on the gutters to our house and listening to my Ipod. The night was taking over the day and I sat down on the roof and looked up at the clouds. I was listening to the Dixie Chicks (a very good group despite the name) and the song Godspeed started to play and I just broke down right there on the roof. I grief was so powerful that my knees weakened and I couldn't stand. I use to listen to that song "Godspeed" before we got the diagnosis. The song summed up my feelings for my son and the love I have for him. After the diagnosis, it still sums up my love for him but now it has a very different meaning to me.

gretchen said...

In the months reading your blog, I have often felt humbled by your wisdom and your perfect understanding of Bud. You always seem to know the right thing to say, the right way to look at something, and the most eloquent way of writing about it. And your love for Bud is palpable, even though you don't write a lot of "mushy" stuff.

Now I am beginning to understand that your wisdom has been gained at great cost. I can't pretend to understand that pain, as I have been blessed with 2 easy pregnancies and healthy births.

I will never take that for granted.

kristina said...

Bittersweet. That's what Sappho calls love and, while she is not referring to a mother's love for her children, "bittersweet"--the Greek is glukupikron, literally "sweetbitter"--is how I think of life with autism. Sappho says, too, how life "creeps up" on a person (herpeton) and knocks us over like a whirlwind--stealthily, wonderfully, terrifyingly, sadly beautiful.

My mother-in-law--when she was more lucid--said to my husband, "Your heart is broken." I chug on, immersing myself in taking care of Charlie's practical needs, but many is the day my husband has been knocked down by grief. Who will be there for our boy when we are gone? Who will swim with him in the ocean?

I like to think I use the grief as an impetus to keep working, fighting for, struggling to do the best by Charlie every day. Bittersweet, but the sweetness is the best.

Eileen said...

This post was so beautiful and honest written right from your heart. I so admire your strength and the unbelievable Mom that you are for Bud. You have suffered a great loss and I can not imagine how you feel. I am so sorry for the loss of your two babies. Let the grief come as it must. Your friend from church sure does carry some wisdom. Take that much needed breath!

Wendy said...

Thank you for sharing this part of your life with so many readers. Since I found your blog I've checked it each and every day to see what kind of insight you can offer. Your words make me laugh and, like this entry, they also make me cry. Bud will be a better person because he has you for a mom. Your dedication and love will pull him through. Take a deserve it.

Anonymous said...

I can identify with you somewhat. I lost my baby last March at 24 weeks. He was my first baby and once we passed the first trimester , I was beginning to reallly put an image in my head of our lives together. Every appointment revealed a "normal", "perfect", and "healthy" baby.I found out at our 24 week ultrasound that he had died at some point in the past weeks.

I'd like to say that I'm somehow better for the loss---that I had gained some greater insight, more empathy, more patience, but really I feel like a part of the person I used to be is hopelessly lost. It all seems so pointless and random, and I'm left with alternatively wanting to talk about it and then not wanting to acknowledge it at all. I want to be honest, but I don't want to be a downer. I still don't like social functions, and still avoid those friends who delivered their babies succesfully a few weeks after I was supposed to. I feel cheated out of the future holidays. And I miss the person that I used to be---the one who was positive and saw good in everything. I feel hopelessly broken. I can't figure out who I mourn for more---my little boy or me.

I should say that I'm pregnant again and we're going to the 24 week ultrasound on Wednesday, and by all indications, things are moving along well this time. I'm starting to look forward again (and I do think that this is our baby at last), but I still have that hole in my heart.

Thanks for spilling it all here. I guess I needed my good cry too. May we all find peace again someday.

The Jedi Family of Blogs said...

Thanks so much for sharing your grief as well as your joys, MOM-NOS. After B was diagnosed with autism I went through a period of grieving B's never-to-be-born sibling. I was 38 when I had B, & miscarried his younger sibling when he was 2 1/2 & I was over 40. I came to my senses at that point & we didn't try for any more kids. I am very grateful to be able to put all of my energy into B, since there's no way any of us would be sane if we had 2 children. I am now 5 years into perimenopause & feel very positive about my body's changing- although it's definitely strange & uncomfortable. I'm glad to have come to a sense of peace about the number of children I was able to have before beginning this process &, above all, so grateful to have been given the opportunity to have B. Again, many thanks!

Mom to Mr. Handsome said...

I thought I knew what to say, but the backspace key seems to be getting the best (or worst) of my writing in this case. So, I will say this, thank God for putting people in our lives when we least expect it to guide us on our way.
Take care.


supposedly susan said...

I know this song. It has such lyrics, but man it is hard to dance to.
Have you ever read anything about "Chronic Sorrowing?"
It sounds dreadful I know, but I find comfort in it, when the grief revisits me like an unwelcome house guest, or my MIL.
Anyway, keep fighting the good fight.

Anonymous said...

I'm sending hugs and kisses. Like you Jan-feb are difficult months after losing our little angel Mia. I often wonder how alike or different she would be from her twin. When meeting other parents I dread the question "Is she your only child?" Three years later I still can't bring myself to say "yes". Mia lived inside of me for 24 weeks. She is as every bit as much as my baby than her beautiful twin. It breaks my heart that L was robbed of her sister and maybe someday of her maid of honor.We were chosen to be moms to these angels for a reason. I hope you are feeling better soon I hope that you find comfort in pictures or like me an outfit that smells of her (I fear that someday that smell will be gone) XOX0

mommyguilt said...

I will never know that kind of grief, and I can say that I didn't grieve the autism/reality dx as much as most, but the pain you feel each year is definitely one that we will be more than willing to help you bear. I know that we can't make the grief go away until it's time, we can't give you hints if we see the grief sneaking up on you, nor can we just shove it all in a corner and make it disappear for you. We can, though, be hear to help bear your load. Always here for you.

Estee Klar-Wolfond said...

I always say my life was a blip on the screen before I had 37. I never had a chance to have another child (I am nearly 41). I often grieve that just when he needs it the most (the support of a sibling close to him in age), he cannot have one. He can't even have a husband is so allergic. I try to take refuge in the thought that he at least has 4 step-siblings (ages 13-21).

When we suspected Autism, on November 28th, 2003 at 3 p.m. (I received a call from my husband whilst sitting in the hairdresser's chair), the world quickly closed in. I cried nearly all weekend and little Adam was distressed by my overwhelming emotion. By Monday, I got to work. I know the feeling of never really grieving. I think the grieving gets overlayed by acceptance and the reframing of our expectations and experiences.

It has been 2 1/2 years since then. I still worry. I still have moments. Aside from sheer tenacity, there is always some kind of ache.

Hope said...

Your poignant grief touched me. I work with individuals with diabilities and know that parents are the unsung heroes in their children's life. Grieving the loss of hopes and dreams for our children along with the challanges that come each day can leave you weary to the soul. Perhaps this kind man was your guardian angel.I send you love.

MothersVox said...

Oh MOM-NOS, there is a small puddle of tears collecting on my keyboard as I try to wrap my mind around all that you have shared in this haunting post. How this grief creeps up on us . . . I have been wrapped up in just such grief over the last days and fell silent, neglecting so many things and pulling various sorts of blankets around myself. Now I find that your candor and eloquence has cracked open some of the hardening that was probably going on in my heart.

Breathing with you too.

Anonymous said...

Thank you. I came here by way of mothersvox's blog.
My ASD child also has spina bifida. I know of one other boy who uses a wheelchair. My child uses a wheelchair now, but for a while could walk with various aids. After having my handicapped child I had a normal child. He had to give up a lot because I was a single mom and I couldn't give him what I wanted to give him. There were a million places I couldn't take him because his sibling was in a wheelchair and I couldn't always split them up, though I wasn't averse to leaving my handicapped child with someone else, it just wasn't available most of the time.

My son is wonderful, he's magnificent, he's a blessing, he's moral and kind. But I really can't see him taking care of his sibling if I died, at least not yet. He's 23. Maybe in a decade he might have what it takes, but not now.

There's no guarantee that the normal sibling will be able to take over after a parent's death, and I think it is immoral to create a child just to take care of the disabled one. Adopting specifically for providing an autistic child with a companion was actually suggested in an autism magazine. I told them I thought they were dead wrong and should be ashamed of themselves for even thinking of such a thing. Belonging to a loving congregation is a much better way to go unless one has a huge and very close-knit family to fall back on.

As for sorrow, I feel it. I have my little moments of angry jealousy when I see offspring younger than my handicapped child, the children of my friends. go to college, get married, walk... But then I love what having this child has done for me. She's a blessing to everyone who has the privilege of meeting her. I also think having a Bible based hope for the future helps, but the grief is there.

I just wish that parents of ASD kids whose kids can walk and who don't have any life threatening physical conditions were grateful for that. My child's lifespan is likely to be shorter than other ASD kids because of spina bifida related stuff, and that is the worst grief I have, fearing losing my precious daughter. I dare not let myself think of it, it's too awful to consider.

Anonymous said...

There is no storage space for locking up "The Past". Instead, there's a shelf, very near to your heart , very accesible, where the items of storage are content to stay. The tricky part is the filing of these items. Your wise friend knows the secret to the filing system. When something happens to us, and we stop breathing, because it hurts so, the item stays front and center on the shelf, waiting patiently for the day, or days, that we take it down, hold it in our hearts, feel it's weight, and retch its pain. Only then, will our hearts be able to create more space for that them to move further in...not away, but deeper into a more secure, safe place, that allows the rawness to heal. It takes thousands of deep breaths. It will always be there - waiting for a smell, or a song, a date or a sight that will conveyer that item right back to the front row. But after thousands of deep breaths you'll see that the item is okay, it's safe, it has a purpose in your heart. As for the imagined have it, really you do. Keep breathing...I've been doing it for 30 years, and still, every once in a while - I have to remind myself to do it again. Blessings dear.

joker the lurcher said...

i came across this post from a link in your later one. i lost a baby before my son, quite early in the pregnancy but it was devastating to me. i cannot imagine how hard it is when you lose more than one.

i did not grieve when the autism diagnosis came as we already thought that was going to be the case, and we would not change our son even if there was a "cure" - he is perfect as he is.

i send you kind and warm thoughts and hope your pain eases a bit.

Anonymous said...

Bud may be the luckiest boy in the world - Mom-NOS, you reached out to me yesterday, and I'm so glad that someone reached out to you, no matter how skilled you are at hiding the hurt. I, like all the other responders, am blown away by your eloquence, and am envious of your strength. Now, only if I could stop the blubbering, I could literally wring out my spongy ergonomic wrist protector.

The pain will never disappear completely, but it will ease as Bud's accomplishments grow. Remember what you said to me "No feeling bad about feeling bad". Pat yourself on the back, you are doing a great job with your son, and since discovering your blog yesterday, I can say it's done a hell of a lot for me. A lifetime of thanks.

Anonymous said...

wow, wow wow wow. I was looking for Chrstian song lyrics for a dear friend who was recently widowed and "stumbled" on to your blog. You have such an amazing gift of self expression and use of words. As I struggle with my own inability to handle my husbands recent illness on my own and the recent loss of a dear friend I take great comfort in your words. Thank you for making them public. They have blessed me beyond words. God Bless and keep you. Staci -

Anonymous said...

i have no other words than these...

may God continue to work through you as you speak to the hearts of others.

i am just sitting here a bawling mess.

Anonymous said...

My 14 year old daughter was dx with pdd-nos in November. After 8 years of people telling us it was ADHD. I was sleepwalking through the holidays. I read your post and just completely broke down crying. Thank you for sharing and for helping me uncork the grief. You rock.

Brett and Cindy said...

"stealth grief" - now I have words to describe what happens to me now and again. Had a bad day with the boy (19 with autism)yesterday, woke up sad and crying. It sneaks up on me, the pain that I think I have successfully put aside, but once in awhile, it comes back with a roar. When I am not expecting it, I don't handle it well.
I love your blog, it encourages me and makes me laugh. thanks for being so transparent.

J. Lorraine Martin said...

What a beautifully written piece. I'm sorry for your tremendous losses. Your words resonate with grace and eloquence.

Dixie Redmond said...

What a good writer you are. It's 5:46 and I'm crying into my coffee. This has been a stealth grief year for me, too.


Scrapperdee said...

I'm really late in posting - I found your blog through facebook this morning.

I love the term stealth grief - I've been in it for at least a year. I lost our first child and our 2nd and only got his autism dx Feb 2011 and I'm still struggling.

He will be our only child too and that is a big part of my grief - he has no siblings, he has no cousins, if he can't make friends, who's going to look out for him?

Thanks for your post and your blog.