blue sky shining over

Month: October, 2014

the evaluation

it was fortunate that our housemate savannah wore her clickiest heels today.

the day of the big developmental evaluation. the day that we hoped to get some answers. the day that we had to drop aida off and be up on the hill by 8:45am … and our alarm didn’t go off. fortunately, our housemate’s loud, clicky heels saved the day, and we managed to get there on time.

we didn’t receive many results, conclusions, or diagnoses today, but we didn’t need to. they spoke everything we needed to hear. every validation, every concern, every loving comment about ash, every affirmation of our parenting, not one of these was wasted.

“of course you can’t just use normal sleep training methods with him.”

“of course you can’t just take his bottle, his source of comfort, away.”

“you guys must be exhausted.”

“i can see the anxiety you’re talking about.”

“his signing vocabulary is excellent, and he obviously understands language really well.”

“it’s ok that he’s on such strong medication; sometimes it’s needed.”

“you guys are doing such a good job with him.”

“he’s such a sweet, engaged boy.”

and on it went.

we’ve received so many pat answers to ash’s problems. so many practitioners have insisted that if we just take away his bottles, let him cry it out, follow a stricter routine, respond less to his outbursts, that these are the answer to his problems. so we try this or that or the other thing, and it doesn’t work, and we go back to hear the same thing, only firmer, harsher. and my mother heart aches, and joel’s father heart seethes, because you can’t fix such deep pain and difficulty with a few parenting techniques and a thick skin.

but of course, today’s practitioners knew that. they handled ash with gentleness, caressing him with loving touches while performing examinations, smiling with him as he raced down the hallways, praising his earnest attempts to accomplish tests, laughing at his sweet smile. they understood.

they saw him, not as a problem to solve, but as a baby to help.

and so, even though we don’t have a magical solution to the fact that he is half a life behind in spoken language, struggles with physical milestones, startles and fears the world around him, and doesn’t sleep at night … that’s ok.

he was seen. he was heard. he was loved.

and we have some new referrals to some new people and some new tests, and maybe next time will be different. maybe.

for now, though, we are done with the tests, and the doctors, and the exams. done with papers and questions. together and content, the referrals and the answers can wait for another day.

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the rain in our rainbow

i haven’t written much about ashal’s difficulties, mostly because i don’t want to give the impression that i’m either complaining about losing a child or complaining about having one.

i guess i just don’t want y’all to think, “my word, there’s no pleasing that woman” … or something like that.

this means that i’ve left out large swaths of our life, because, from the beginning, ashal has had some significant challenges. they’re the nebulous, hard-to-pin-down-in-an-almost-2-year-old kind; no one wants to slap a diagnosis on a kid that little. but, suffice to say, we’ve been to physical therapy, several kinds of occupational therapy, several speech therapists, a pediatric sleep medicine specialist, a pediatric dermatologist, a chiropractor, several naturopaths, and had him tested for everything from restless leg syndrome to diabetes to food sensitivities to cancer based on his confusing array of symptoms. the child drinks 70-100 ounces of water every day, requires constant stimulation to sleep 90 minute stretches, has a spoken vocabulary of two words (but signs over 60), and is terrified of everything from moths to a particular spot in the bathtub. he startles and sobs for hours every day, and his fitful sleep is punctuated with moans. we’ve tested every bodily secretion possible for every problem imaginable, and put him on medications that i would be nervous about giving to an adult. not to mention the gallons of homeopathic preparations and potions that have been poured down his throat; thankfully the kid likes to take medicine.

does this sound like complaining? i really don’t mean it to … the truth is that, with all his difficulties, he regularly brings tears of joy to my eyes with his compassion and sensitivity. he’s the kind of kid who, at less than two, will break off a piece of the food you give him to share with his sister, without prompting. his “gentle hands” would melt your heart, and his dance moves would warm your soul. he puts his signs together into 5 word sentences, and he has a strong desire to please those that he trusts. he’s an empathetic, observant little boy; while you’re cooing pleasantries at him, he’s busy staring into your soul with his giant brown eyes. his smile, while not quick, is warm and roguish. he studies everything from books to birds with keen senses and an analytical mind, immersing himself in his current interest.

all to say, he’s a special kid, and i don’t mean to complain.

but being his parent is a tall job.

we’re stumbling through one day at a time, because that’s what parents who love their children do. it is all consuming, exhausting, always on our mind. we struggle with balancing his myriad of appointments with days off, and we try to catch ourselves when we start seeing him as a problem to be solved. it’s hard.

some practitioners get the job done, and no more. some give bad advice. some are gems, who not only treat ashal but love him, too. we treasure the good, ignore the bad, and pray for the wisdom to know the difference.

tomorrow, we have what is perhaps one of the most monumental of ash’s appointments. it took many months of waiting, but finally, he will have a full developmental evaluation at the doernbecher child development and rehab clinic (cdrc) at oregon health sciences university. it will be a long, full day of meetings with many professionals who, after meeting with us and observing and testing ashal, will meet together and compile as complete a picture as possible of his development.

we are trying not to get our hopes up; we’ve been down many roads before in his short life.

but maybe, just maybe … this time will be different. we’ll see.

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stillbirth: a guide for friends and family

the exact words are always different, and the names change … dear god, so many names … but the question is the same:

“my loved one’s baby died. what can i do?”

the tears come every time i read it. another life gone, another family shattered, a fellow mother hearing those horrible words, experiencing that horrible night, and the day after it, and the weeks that followed. the broken heart that breaks again, and again, and again.

in honor of pregnancy and infant loss awareness month, this is my answer to that question. i hope it will be helpful to you.

you cannot bring this life back, but there is so much you can do. you can be the reason they keep going, the reason they crawl off their tear stained pillow in the morning, the reason that, someday, they will laugh again. you cannot carry their grief, but you can carry them while they hold it.

you will never be more needed than in this moment.

(this post is specifically written for the loved ones of parents experiencing stillbirth and late-term pregnancy loss, but much of it will also apply to earlier miscarriage and infant loss as well.)

memorial candle star sky picturethe early days

if you’re one of the first
except in rare circumstances, pregnancy loss is shockingly, traumatically unexpected. and then the parents, in their state of shock and grief, are immediately battered with dozens of time-sensitive decisions that they have no time to research. because of this, opportunities to create and preserve memories are often lost. if you are one of the first to be brought into the time of loss, you can help by learning about their options. there are organizations that can come to the hospital and take beautiful baby pictures. hospital staff can take handprints, footprints, and casts of hands and feet. the baby can be dressed in beautiful baby clothing. a lock of hair can be cut and saved. in some areas, parents can transport the baby to a funeral home if they desire.

there is no one assigned to coach parents through the options of pregnancy loss, but as a friend, you can be that person. know their options.

(the resource list at the bottom of this post is a great place to start.)

less words, more tears
there is nothing you can say that will make this situation better. there is, however, plenty you can say that will cause pain. instead, cry with them. if they have no tears to shed, offer your tears to soothe their heart-wounds. hold the baby, if you can, and speak in a quivering voice about its tiny fingers and perfect nose. cry for the injustice and pain of a lost future that no words will save.

don’t wait for them to ask.
take initiative. your loved one cannot ask for what they need any more than a car crash victim can ask a paramedic for the medical procedure that will keep them alive. right now, your loved ones’ energy is completely wrapped up in just surviving.

be proactive, and if you’re unsure if what you’re doing is useful, ask them.

her body is sacred ground.
a mother of loss carries a world of life and death within her. her body, wracked with physical and emotional pain, carrying the living cells of the soul who is gone, deflated, bearing her crushed heart, is profoundly mysterious. the threshold of life and death has met in her belly, and she was the whole universe to this child that you mourn.

care for her. feed her nourishing food and life-bringing water, massage her empty hands and swollen feet, speak softly in her presence, bring her healing teas and herbs, light sweet-smelling candles… she has been closer to the cycle of life than any human ever is, and has experienced things that she herself does not understand. you can help to ease her journey back toward the world of the living; accept this responsibility with reverence.

what to say

listen.
usually, the best thing you can say is nothing at all. usually. most of the time.

instead, listen with your heart’s ears to the quivers in her voice, to the love when he speaks his baby’s name, to the anger and confusion threatening to burst from behind every word. listen to her sob. listen to the silence. truly listen, and be silently awestruck at the volume of the pain and love you hear.

ask questions.
when you must say something, start with questions. if you are unsure whether a question is ok to ask, ask about that! “do you mind if i ask you ….?” “can i ask you about …?” if you suspect that they may not want to talk, ask, “do you want to talk right now?” always start with a question.

know your loved one…
there is no universal script for speaking to a grieving person. what is comforting to one person may be alienating to another, and what is refreshing to one may feel defeating to someone else.

“god is in control.”
“everything happens for a reason.”
“your baby is in a better place.”
“your angel was too good for this earth.”
“your baby’s spirit wasn’t ready to come down yet.”
“you can try again.”

these are all phrases that i have seen some cling to for comfort, and others reject as horribly insensitive. know your loved one, and choose your words carefully.

…but not too well.
losing a child has a way of throwing our paradigms on the floor and crushing them. your devoutly religious sister may be enraged at the god she trusted; your atheist friend may suddenly cling to the hope of meeting his baby in the afterlife; your optimistic coworker may feel betrayed by the universe they believed was a good place. when in doubt about what to say, see above: ask questions.

it’s not about you … or is it?
parents want to know that their baby mattered. the loss of a life is too great a magnitude for one family to bear alone; this small human who would have interacted with thousands is gone before they can be missed by more than a few. the grief of the mother, the parents, and the immediate family is the most profound and acute, but your grief is valuable too. tell how you will miss the baby. your pain is a precious gift, and sharing it will ease your loved one’s isolation.

say the baby’s name.
speak the name. write the name. there is power in a name, and there is healing power in sharing the name of one who is gone.

web ready-024what to do

don’t forget family.
every member of the family experiencing pregnancy loss is grieving. don’t forget partners, other children, grandparents, aunts and uncles, and other relatives. you can validate their grief and give them a safe place to express it, and you may be the only one doing so.

give practical help.
grieving is exhausting. the physical side of pregnancy loss is exhausting and expensive. caring for a mother who is recovering from birth is exhausting. the trauma and shock of pregnancy loss is exhausting and all-consuming.
bring meals or snacks.
clean something.
babysit.
give a thoughtful gift or gift card.
grocery shop.
give rides.
do yardwork.

do something. they need it.

adjust your expectations.
your loved one will never be the same person again. don’t expect them to be. once the dust settles from the initial stages of shock and trauma (and that may take much longer than you expect), start getting to know this new person, the parent-who-has-lost-a-child. don’t place burdensome behavioral, social, emotional, and spiritual expectations on them – it won’t help, and may cause you to miss opportunities to empathize and connect. grieve the loss of the loved one you used to know, and realize that they can never return to “how things used to be.” don’t place blame. instead, accompany them into this new reality with respect and acceptance.

practice rituals of remembrance.
after we lost our baby on december 14, a friend emailed me remembrances on the 14th of every month for a year. another friend lit a candle for him at her church and sent a certificate. another friend sent a care package, with books and a prayer box, and several friends gave thoughtful gifts. some sent greeting cards with pictures that reminded them of sky. others have given charitable contributions in his name. several friends made a christmas stocking for him, and gave it to us on his first birthday. one friend lights a candle for sky every year on infant loss awareness day. several people give gifts and flowers on his birthday each year.

remembrance rituals are deeply personal and can be shared with the parents at any time. you can be as creative as you wish, or use google for ideas. rituals can embody thoughtfulness, intention, focused emotion, personality, a sense of transcendence, and effort, all of which are soothing to the lonely experience of grief.

you are needed. yes, you.
it is natural to feel intimidated by parental grief and unqualified to enter into it. these feelings are normal, but they cause harm when they lead to a decision to step back from the grieving parents at this time. your voice, your listening ear, your questions, your practical support, your insight, and your shared grief are valuable. losing a child is incredibly isolating, and you can be sure that many of the people that your loved ones have depended on are dropping out of their life right now.

yes, being around grief is scary and unnerving, but don’t add yourself to the long list of people who are emotionally abandoning your loved ones. lean in to the pain and fear, and know that your choice to forego the easy path will result in an intimacy that is deeply rewarding.

don’t ever stop.
in one paradigm, the human experience can be divided into two parts: before experiencing profound loss, and after. eventually, everyone who lives long enough joins the “after” crowd, and must learn to incorporate grief into their daily lives. those who are here know the confusion of sudden grief; the lines of their face speak to the paradox of sobs and smiles, tears and laughter, profound ambivalence.

“You will lose someone you can’t live without,and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”

~ anne lamott

the pain of losing a child doesn’t end after a few months, or a year, or another baby. almost all of the voices that share your loved one’s grief will dim and disappear as the months pass; don’t let your voice be one of them. continue to ask questions, share your grief, speak the baby’s name, observe remembrance rituals, give thoughtful gifts, and practice acceptance as the years go by.

this is the new normal.

when the next one comes…
remember:

the new baby doesn’t replace the former.

joy can live with grief, but doesn’t remove it.

every happy moment will have undertones of sadness.

every hopeful moment will have undertones of fear.

the new baby will not put the parents “back to who they were.”

experiencing pregnancy and infancy will bring new facets and depths of pain to the parents’ grief.

the new baby needs people to be excited for it; don’t let fear override that excitement (but be understanding if the parents do).

living babies are a lot of work, even without the emotional processing required by a previous loss. your loved one will need your acceptance, involvement, and practical and emotional support more than ever.

web ready-017resources

faces of loss: resources  |  a comprehensive, well categorized resource list of everything from memorial jewelry to books on child loss.

unexpected goodbye: when your baby dies  |  a step-by-step pdf, part personal story, part guide, on the days immediately following baby loss.

glow in the woods  |  a nondenominational website for babylost parents to grieve, connect, and learn.

if you or someone you love has experienced pregnancy or child loss, what would you add to this list? please share in comments.

a typical morning

the other day, aida cooed a special little noise that she makes occasionally. it’s a gurgly little series of “hoo hoos” that melts my heart. it would probably melt your heart too. i listened to her with a melty heart, and suddenly realized that this might be the last time she ever makes that sound, at which point my eyes got a little melty, too.

there’s this myth in the current parenting paradigm – i’ll call it “the instagram effect.” (catchy, no? points if you thought that it sounded like the title of a big bang theory episode.) this myth is that it is somehow possible to record every wonderful thing your child does that you will miss when they stop doing it. it’s subconscious, of course; no one would admit to actually thinking that. but it’s easy to see why we start to believe it, surrounded as we are by photos and videos and statuses and blogs (like this one) filled up with an exhaustive inventory of other people’s memories. we snatch up our camera phones at every turn; the mantra of parenthood becomes “get her to do it again!”

but, parenting isn’t about “again” … it’s about now. catching the memory must be secondary to making the memory, and that means that a lot of memories will go uncaught, released like balloons into the sky, never to be seen or thought of again. my mind’s ear has already lost the exact inflection of aida’s sweet little coo from yesterday, and i didn’t catch it. the joy in moments that will slip away is bittersweet; the air fills with the scent of impermanence.

one of the reasons i am a photographer is that photography is an effective weapon against forgetfulness. professional photography is a particularly efficient weapon against forgetfulness, since a good photographer will see the details that you didn’t even realize you’d want to remember. a good photographer will sense the expressions that hold a deeper place in your heart. a good photographer will feel shimmering layers of relationship and emotion through the light and air. a good photographer doesn’t turn your life into art; they show you the art that lives in your life.

it took about 45 seconds of perusing the blog of weeno photography to know that i needed to hire them. ashley offers a unique service that she calls a “truth session,” in which she spends 3 hours with your family doing … whatever it is you do. making memories, in your very own house. with your very own mess, even. (or however much is left of it after your mad cleaning session the night before. wouldn’t want to be too truthful.)

on a sunny weekday morning in july, ashley came over and photographed our breakfast, our process of getting the kids ready to go out, a sweet roommate interaction, a walk to the park, and naptime, all very typical occurrences around here. i’m so grateful to have had this chance to make some memories, without the pressure to catch them. i know that many memories will fly away, but that only makes the ones that remain more precious.

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