Who am I?
Before my son was born, I had a career. It wasn’t a stellar, glamorous career but it was steady work doing something I’m good at, something for which I was appreciated and valued and which gave me a certain measure of latitude in my days and weeks. When I became pregnant, I was a very high-risk patient due to my age and my reproductive history of miscarriages and infertility. I was put on “modified rest” and highly restricted activity —definitely no thirteen hour days commuting into the city, managing the stressful details of running an office and juggling the demands of multiple executives. Through my entire first trimester, I managed to stay in contact with my office and keep things running as best as I could through conference calls and emails.
At the end of my first trimester, my new obstetrician gave me the thumbs up to return to work. I was relieved and felt a renewed sense of purpose each day. My plan was to return to work just a few months after the baby was born. Life, as it turns out, had other plans for me.
Nik was born at twenty-seven weeks. Because of a previously unknown uterine anomaly, his growth had been restricted and he was the size of a 23 or 24 week fetus. He weighed in at a whopping 530 grams at birth —including the breathing tube and apparatus to hold it onto his impossibly tiny face. One pound, two and five-eighths ounces of determined fighter. He turned my world upside down in ways I haven’t even begun to identify!
Two hundred nine days in the NICU, countless operations and ongoing interventions. It became glaringly clear that my work days were over for the foreseeable future. Nik’s needs were too great and the cost of childcare too steep. My fulltime job became “mom”; my new boss had me wrapped around his little finger. Somewhere along the line, I just assumed that I would return to the work force eventually —once Nik was “healthier” or when he went to school. My husband and I had discussed the fact that we probably couldn’t survive for long on just one income.
Fast forward six years. Many twists and turns in our journey have led us to a new home, a new career for my husband —who is about to return to school to advance that career further— and the unexpected decision to home school our son. His needs are still very great and the cost of specialty care is prohibitive. We cannot afford a private school but I am no longer able to juggle the constant demands of his safety and education with running a household, being a wife, being a mother and trying to make it all work. Something has to give.
That something, historically, has been me. Tonight, as my husband and I discussed the next stage in his career development, it finally hit me; I’m not ever going back to work in the way I once imagined. My husband’s school program will take another two to two and a half years at which point I will be nearly fifty. Ten years out of the work world. Ten years out of the loop of, well, everything that doesn’t somehow revolve around parenting a child with multiple disabilities or being a wife. Make no mistake, I do not devalue those things at all —they are a vital part of who I am.
However, tonight, it felt like the paradigm of my future that I’ve held for so long simply vanished in a puff of smoke. I am left feeling lost. Who am I? What will I do? Who do I want to be outside of my roles as wife and mother? Is this all there is?
I don’t have any answers yet; I suspect I won’t for a long while. But I do know that I need a plan for my here-and-now to make sure that something anchors me, fills me up. Something gives me a sense of self outside my family, a sense of purpose. Something to look forward to that is just for me.
They say necessity is the mother of invention. I say reinvention is the necessity of motherhood.
I really like this post. I have felt all the same things you conveyed. It is often such a lonely road, and also very hard to hear of other friends and even spouses having so many choices in their life, when so often we don’t have those same choices. I admire your choice to home school your son early on; it is a sacrifice that I believe will reap great benefits for your son. I hope you can find others on the same pathway to buoy you on the days that can feel extra trying. Only those of us who live it can fully understand that we are constantly in a state of giving, but often depleted and in need of others giving to us. Hang in there, and yes, find your personal reinvention. Blogging has been my intellectual and creative escape at times and has connected with me others who understood my world. It has dispelled loneliness and it has emboldened me with a sense of purpose. I wish you peace on your journey. And please know that this mother you don’t know understands and connects to the feelings you expressed today. Blessings to you and your son.
I have had these “who am I?” and “what do I do now?” thoughts this whole year as the Roc has been in school. I figured our family would be 4-5 people, not just 3, and that I had a few years to figure out what I wanted to do… My mother keeps telling me that I will need to do something other than this, something for me, but I haven’t yet figured out what that will be.
I look forward to hearing what you figure out for yourself!
love that last line, could there be a truer statement?
(I know modified bed rest all too well–weeks 17 – 28 were spent on our couch watching Samantha Brown on the travel channel and That 70s Show reruns while waiting for my husband to get home from work. I was allowed to stand long enough to shower or make a sandwich (or puke) and that was about it)
This is such a heartbreakingly honest post, in so many ways. I wish I had some answers for you … but make no mistake, my friend … they will come, in some form, in some way.
Not to be dismissive of the loss of your paradigm, but in reality, that future never existed anyway. No future does. So dream up a really good one just for the sake of dreaming and then go for it. Can you go back to school when you’re husband’s done? Get certified in something? A 10-year gap becomes meaningless with a new, official piece of paper under your belt. Maybe you could even start some schooling now, something online, just a class to get you rolling? Take it a step at a time, just like you’re doing with Nik. You’re both worth it.
I’m having this discussion right now with someone close to me. I think it’s important to find a passion (besides children, family), something that gets you lit. Is it special needs? Battling prematurity? Respite care for parents? Writing awful romance novels? Find it, target it, see what you can do with it, even if it’s just little by little.
For what it’s worth, there were plenty of people in my grad school cohort who were in their 50s. Someone very close to me completed a PhD in their 50s. I genuinely believe that for many many things, it’s not too late. Anthony Bourdain says that if you’re in your 40s, don’t go to chef school…you’re just wasting your time. But other than that…? Go!
I left my career also, and thought freelancing would keep me in the game. But I don’t like that part of it. I liked the managing part of the game…but can’t do that with homeschooling the boys etc. If only I was as good at managing life as I was at managing projects! My masters in info sys is already way outdated, so who knows what the future will bring? I’ve been advocating for so long, but I can’t simultaneously maintain “life” and the emotion tied to that passion. The thought of going back to work scares the crap out of me! For now, I find that gardening really helps me feel calm and productive. I feel like in my own way, I am providing for my family, at least with the edibles. So that is what I dream about, somehow having a simple sustainable life and growing things. Probably not a reality for many reasons, but I dream about it to keep me going. And I make rain barrels and divide rootballs and plant foodstuffs and compost and collect seeds for the next year… **hugs**
What can I say. We are in the same boat. First off, I hope you realize that you are an intelligent and talented woman as evidenced in your writing. Your blog, although it doesn’t pay the bills, provides a service to a lot of us out here. Your ability to convey your thoughts and feelings provides endless comfort to me and many others I am sure. I don’t know how many other people can claim such a profound effect from their jobs.
Personally, my next career choice is to be a professional dry red wine taster. Husband is telling me that isn’t likely to pay the bills either.
weepiness as I read your post. I too had that puff of smoke moment.
I know you will shoulder this, or shrug it off as we must do in this life, but that moment was big.
I have typed and erased hundreds of words just now, and nothing quite seems right.
I just want you to know that I think I have felt the same way- feel the same way- and I want you to be okay and feel whole and inspired.
and I am rooting for you.
“reinvention is the necessity of motherhood” – brilliantly put, and so true. Thinking of you as you continue the process.
In some ways, I want to help you believe that the possibilities are endless and your value immeasurable. And in other ways, I want to simply say yes, it is so very hard, isn’t it?
I don’t know what the answer will be for you, but I am confident that you will find a way to get where you need to be. You are absolutely right to need and want and desire something beyond your role as wife and mother. And you clearly have so very much to give. I think Emily offers advice worth considering, and like Jennyalice, I’m rooting for you.
You have come so far and grown/changed so much in the last six years, I’m willing to bet the old dream that disappeared last night in a puff of smoke would not have been good enough for you today. Hang in there. One little day at a time.
They say necessity is the mother of invention. I say reinvention is the necessity of motherhood.
yes
you will find it, or it will find you.
holding you close and adding my voice to the cheering section.
Thank you, my friends, for the encouragement, the compassion and understanding…and holding out the possibilities of new and, perhaps, bigger dreams.
I think the magnitude of the realization last night is what was painful because, in our current state of being, it feels like there is no room, no time— no money even— for me to think about school or even “hobbies” right now. The loss of what I *thought* our future might look like simply left a gaping hole.
For those of you that know me or have followed along on our journey for a while, you know that Nik’s daily care and schooling are non-stop. He’s not a child I can leave to his own devices for even a short while as his understanding of danger is nonexistent and his curiosity about all things electronic and mechanical —or water-related —is rampant.
There are no quiet moments, no breathing space. Even the ones I “steal” by closing Nik behind our triple gates to keep him safe while I take a sanity break are fleeting. And I feel like a neglectful parent when I do that. I know I’m not but it’s so hard to shake the feeling.
I guess what I’m saying is that, right now anyway, it feels like I’ve forgotten how to dream and don’t even know anymore what makes me happy. And I’m scared that I don’t even have the time and energy to figure it out. I know I will eventually figure it out and move forward. But right here, right now? A gaping hole that I need to fill. The way forward is unclear and feels out of control.
Did I mention I hate feeling out of control? I’m sure I did. 😉
I’ve been out of the work force nearly 11yrs – not entirely true I do the books for the farm so it’s kept me in the loop But a few hours/mth isn’t the same. 2mths before eldest was born I was sent home. Mat leave was up after 6mths and I wasn’t ready to go back. Then came the pregnancy problems with little boy… Then came 2 children wtih autism.. then, then, then….
Who am I?? Somedays I wonder. Everyone else in this house has something for them. Not that “Mom” isn’t a good title or that life isn’t good…. It’s just I’ve wondered if there wasn’t something “more”.
A year or so I did jury duty. I could have gotten out of it but I didn’t and it was 4 days. Everyone else handled it well… I did not. Rushing home trying to get everything done in the evenings….
Atleast I know now, I’m not ready to go back and need to look elsewhere for the “something for Mom”.
Probably more people than we realize will identify with this post.
I only have hugs to offer and to say that I, too, am rooting for you.
What you might need to think about, on the practical side of things, is a respite worker. My Friend Down the Street has three severely disabled children, and she has a lady who comes in two or three times a week- helps with laundry, lets her get to the store, etc. I believe the social security or medicaid waiver pays for it, I am not sure which one. I can ask about it if you’d like and shoot you an email.
As to feeling swallowed, yes there is more. And yes, you will find it. Or it will find you. I’m starting to think self and identity is kind of like a stray cat. You never know what will show up at your door, and it usually does when you least expect it- but you usually love it.
Or maybe that’s just my life. 😉
@profart Problem is we don’t qualify bc Nik’s not “disabled enough” to need it and, according to Medicaid, we make “too much money” (ha!). But not enough to be able to PAY someone to help us out. *sigh*
Love the stray cat analogy. I suspect there’s a grain of truth there. I hope whatever shows up at my door is fluffy and good natured; I figure I’m about due, right? 😉
Ah yes….I’m way, way out of the loop and am not entirely certain what my next steps are in the next few years. Feels very daunting.
Wow, B – this post rocks my world.
I, too, think the future never was more than a dream, and it’s a dream you can keep dreaming. I believe in you.
love.
I’m part of your rooting section, as I’m sure you know, and believing with the others that a new path will emerge. A friend once told me that the journey often begins before the path is revealed. I think yours already has.
Oh, the resonance.
Re-inventing over here too. It’s a wrenching process, especially the not-knowing what the new invention will look like. (I’m not very good with uncertainty.)
It will emerge…. you will emerge… we will emerge.
Blessings on the journey!
Coming in late, but wanting to say that I’ve had the ‘who am I’ feeling, too, if under different circumstances. Also did 10 weeks of strict pregnancy bedrest.
Much wisdom already here but want to ditto the comment from ejwillingham.
farmwifetwo makes a good point that adding employment to your current demands might not help either. Wondering if your hubs returning to school will allow him to flex more childcare time into his schedule – ?
pf mentioned a waiver program – means it is not income-determined eligibility. Medicaid waiver programs exist in most states but many parents have told me some are (purposely?) hidden in regulation. Do you have any case management type organizations in your town?
I love blogland, but it is not enough. Encouraging you to seek-out support IRL. This might be the most radical of suggestions, but churches provide support to many people.
Barbara, you raise some good questions which I’ll have to investigate. As far as I understand it, we don’t qualify for even the waiver. But I’ll check into that.
I’m not looking at adding employment NOW (shoot me if I ever say I’m going back to work before my husband is finished with school, please!?)…that was a “one day, when…” kind of line of thought.
Alas, Niksdad’s school will be an evening program on top of fulltime work. He does have weekends off so there’s some slight relief there. But we need time together as well.
I know we’ll figure out how it all will work; we’ve managed to muddle through pretty well so far. We do have some ideas we’re tossing around. Nothing we’re ready to talk about publicly yet, though.
Your insight, experience and eloquence are in demand to the readers of this blog. When Nik’s development leaves you a little more time, you might want to think about a book, or other ways of sharing what you have learned.
@VAB Why thank you! I do feel like I want to write something more, I don’t know, cohesive like a book. That might be a while down the road. But I am definitely thinking of ways to share…always. It’s one of the things my husband and I feel strongly about — making our experience “count” by sharing/helping others.
Hope you & your family are well. I miss your “voice” online.
The grass is always greener, right? Here I am, wandering around glowering half the time, wanting anything BUT a fulltime job. I was going to say that all I want out of my life is the ability to stay home with my kids, and give my special needs son (as well as my NT daughter, who needs me no less though maybe less intensely) more of my time…hell, SOME of my time. But the truth is that even if I were staying home, even if my income weren’t our only income (or, I dare not dream, we didn’t even need my income), I would still write, so I would still have that ‘identity.’
I wonder if that’s what it is…if THAT is really what you need. Not a job or even a career path so much as a TITLE in addition to “mom” or “caregiver.” A title you’d actually BELIEVE. Something so that you could say to people–and, more importantly, to yourself–“I’m a [whatever].” Because people do treat you differently if they can give you a title.
In other words, I wonder if what you really need right now is the Wizard of Oz, who would give you a diploma or a badge or whatever it is you need to validate your life; something that would help you to realize that you already HAVE that trait–those brains, that heart, and especially that courage.
Because you do.
@TC You made me think of Dorothy’s line, “if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with!” I think that’s more the heart of the matter.
Now that my husband recognizes that the only real paid work ‘ll be able to do outside the home (shortly) after he finishes his program will likely be some sort of clerical or retail work (not worth the child care expense for us), I think I’m really looking for the thing which give ME a sense of identity, regardless of whether I earn any money from it. Not so much whether someone else validates me but whether **I** validate myself. Does that make sense?
Niksmom,
First, big hugs. Grief comes and goes in strange ways. Grief for the life we had, for the life we thought we’d have. You had it hit you upside the head. Ouch.
Don’t mean to go all philosophical on you, but we in the US tend to put much more emphasis on who we are as defined by our jobs. In France (my husband’s family), people are much less concerned with what you do to make money then what you do in your leisure time. But that brings us back to “what leisure time?” Me, too, girl. But if you can’t do it for yourself, maybe you’ll do it for Nik. Like Jess said in her post today, you HAVE to take time to rejuvenate so that you CAN be a good parent to Nik. It’s neglectful for you not to get a chance to relax, refresh, reinvigorate. ESPECially with your husband going to such a full schedule.
But listen to me going on about this when I’m not any good at it. I know it’s hard. Jack is with me 24/7. Sleep is fitful. Anxiety is high. He does need me. But if I don’t find a way to get some time to myself, I will crash and burn. Sooner or later.
Maybe, in baby steps, it would be good to make a list of ten things that make you happy. Just ten little things. Bubble baths? Mystery books? Writing? Listening to music really loud? Audio books?
We don’t qualify for respite either. Any which way. But I do hire sitters who I train. Because our days don’t end at 5. Or even end when our kids go to bed.
Enough words from me. Big hugs.
You have definitely struck a chord in so many of us! I saw so many wonderful insights from your amazing readers. I want to bookmark this so I can come back to it!
I think that the issues are layered one on top of the other – the question of identity, and not knowing what that is. Grappling with not being in control of what’s going on (I’m a total control freak too). The need for a break. Not feeling like there are any options for a break to think, to ponder, to dream, to act on those new dreams.
I think that that last part – not feeling like there are any options for a break – well, that’s what the whole house of cards is built on. You are so strong, so able, so tenacious – but you are also human. And personal growth – like all things, I think – will be stilted unless there is some air to breathe, to process.
I wish I had any answer at all for you. I guess what I want to tell you is this: at this moment, things are the way they are right now; but things do shift & change. That you can depend on, for that is life.
XOXOXO R
Why don’t you petition the school district to place him in a private day school that can meet his needs? Obviously the district can’t offer him an appropriate education (didn’t they try and fail?) and with good reports, Neuro., OT, PT, Speech reports, etc., and a attorney you can win outplacement. Or move to a more autism knowledgable state that will outplace him. Homeschooling a child with his needs will cause complete burnout in the long run.
I so hear you on this. I ask the same questions.
Love.
All grief is so personal that I will not presume to know what will provide you comfort, but I will allow myself to hope fervently that you will feel some good knowing:
we (mamas of blogs) absolutely hear you;
we absolutely respect you and your feelings;
we know it is so hard to go through this;
we can relate on many levels;
I send you wishes for rest every single day;
I, the least cup-half-full girl you probably know, have this strong, abiding, out-of-nowhere feeling/prediction/expectation that something good is coming your way soon, which I will celebrate enormously on your behalf just before having myself tested for psychic powers;
you are a very loved mom, writer, friend.
Does any of it help at all? If not, I hope time will.
great post!! You are so wonderful and have been so supportive. I know how easy it has been for me to lose my identity in all of this, know that I cheer you on as you move forward to finding something that is just for you.
“They say necessity is the mother of invention. I say reinvention is the necessity of motherhood.”
It amazes me, sometimes, how much people define themselves in terms of their roles in society! Your way of seeing yourself first as a career woman, and then later as a mother, isn’t really a self-definition so much as a redefinition of self in terms of the roles you’re filling.
But if I put you on a desert island, and removed every bit of society–including the parts of it you carry in your head–wouldn’t you still be yourself? Even without family, without careers, without organizations or groups of friends or political or religious affiliations, you’d still be the same person. Lonelier, perhaps, but still yourself.
Yes, it’s true that the roles we play change who we are; but, to a great degree, we also choose the roles we play because we are who we are. If you hadn’t already seen yourself as someone who would raise a child, you wouldn’t have defined yourself as a mother.
You are simply you. You are not just a collection of roles and titles and responsibilities. You have your own identity.
Thank you for posting this and being honest about how you feel. It helps me feel not so isolated. I do work as I’m the main bread winner but my husband and I work different shifts to manage the child care which includes an autistic son. It’s hard to get babysitters, between the cost and finding someone comfortable with the autism. So basically when I’m not at work I’m home. It does make one’s world feel very small. I don’t really get much time with friends or to pursue any interests outside of my home. And when I’m home I don’t get much free time as I pretty much have to watch my son like a hawk (he enjoys climbing window sills and soaking in the toilet.) I spend time thinking about what I can do to expand my world so I don’t have a case of the blues. I’m doing more writing and decided I’m going to do some knitting projects, donating the knitted goods to homeless shelters. Good luck finding your way!
Oh my, I could have written this post myself! We have so very much in common. Past careers, a high risk pregnancy, my daughter born at 26 weeks and ultimately a diagnosis of PDD-NOS. I’m very happy to find your blog! Thanks for sharing.
so many wise words already spoken…. remember though, you can ALWAYS reinvent yourself. Turning 50 is no excuse 🙂 I will graduate this year with a masters in educational psychology – I’ll be 51 in September. I will graduate with my specialist in school psychology in 2015 – and then start my practicum and one year internship. So I’ll be starting a new career at 56, minimum.
Find something that you love (other than your family of course) and do something to work towards that, even if it is only to find websites and books about it for now. Begin to think of yourself in those terms.
And talk to your school district – even if you are home schooling, you are entitled to services from them. And if they cannot educate him in school, then they are required to send people to him. That at least would be a way to share the burden. I’m sure they won’t want to do it, but the law is on your side – every child, EVERY child is entitled to a a free, appropriate public education. Every child. Even if it costs them extra.
Sorry it’s taken me a bit to catch up on responding to comments!
@AnIdea, there is no private school in our area to which we can send our child. Nor are we in a position to be able to simply pull up stakes and move. At least where we live now, we have the benefit of family members nearby who, though not able to take care of Nik during the day (my aging parents), are able to provide us with help with household projects, the occasional babysitting after we put Nik to bed, and things in that vein. They try to help as best as they can and we really appreciate what they do.
@karin, thanks for your words of encouragement about possible future plans. I like the idea of checking out things now for the “one day when…” and visualizing myself doing whatever it is I decide upon.
As for the current situation with the school district, our state has actually classified homeschool in such a way as to remove it from eligibility for any federal funding which might be available in other states for supports, materials, etc.
By law, we are not entitled to any supports or services which we would otherwise be entitled to through the school system. Making that happen would require a change in legislation; there is no support among state legislators to do so at this time.
Sorry it’s taken me a bit to catch up on responding to comments!
@AnIdea, there is no private school in our area to which we can send our child. Nor are we in a position to be able to simply pull up stakes and move. At least where we live now, we have the benefit of family members nearby who, though not able to take care of Nik during the day (my aging parents), are able to provide us with help with household projects, the occasional babysitting after we put Nik to bed, and things in that vein. They try to help as best as they can and we really appreciate what they do.
@karin, thanks for your words of encouragement about possible future plans. I like the idea of checking out things now for the “one day when…” and visualizing myself doing whatever it is I decide upon.
As for the current situation with the school district, our state has actually classified homeschool in such a way as to remove it from eligibility for any federal funding which might be available in other states for supports, materials, etc.
By law, we are not entitled to any supports or services which we would otherwise be entitled to through the school system. Making that happen would require a change in legislation; there is no support among state legislators to do so at this time.
We struggle with our school district, also. Our state is not exactly on the cutting edge of autism education. And we are on a nine year waiting list for state services !
Anyway, I wish you luck with your career-related musings. I keep coming up with fun ideas for myself, but I’m not sure when the reality of our family life will let me go back to work.
Hope the sleeping is going better, by the way.
great and wonderful post
I will come back when I have some real advice
ohmmmy …bless you , my baby girl was also born at 27 wks..she was also having IUGR , of course NICU stay , I was on srtrict bedrest too, my commode was right next to my bed , after IF treatments …having lost a baby boy born still born…..but none of it is on blog..for me .ITS i don’t understand I pretend like it never happened unless I come across someone who has gone thru it.
Bless you 🙂
I think we all go through this. It’s hard, but challenging. I found it was kind of nice after I got over the grief of the “loss” or “death” of my identity, my dreams, etc.
I’ve lived around a lot of men and women who have reinvented themselves many times, so I have great hope for you, no matter your age or circumstances.
Don’t count out ever having a career again, if that’s what you want. My great-aunt raised a family and then went to law school when she was 52. She graduated and had a very rewarding career that lasted 25 years. When she retired she was a partner in a major law firm (quite a feat for a woman living in the 1940s) . She spent the last ten years of her life traveling the globe. I wish I had met her. She had quite a full life for someone who thought she was destined to be “just” a mother and homemaker.
you will find it, you, the you that’s in there. i know it. i just do. she’s there and she’s never going away. in fact, through all this time of tending to others, tending to your beautiful boy, changes are moving around in her, in you. it’s hard to believe when it feels like parts of us are laying fallow, are shrinking, evaporating into a puff of smoke. but it’s true.
i’m re-connecting to a part of myself these last few months but i tell you, just four months ago, i was in one of my darkest places. i’m not saying this is what you need because i would never presume to tell you, but is there a place where you can go and let it fly? say all the things that bang around inside? all the things including those that feel forbidden? unload. safely? with someone who gets it. for me, this was essential.
the last thing i’ll say is that things can change very quickly. there is something in motion, right this minute, that is taking you someplace that you can’t even imagine. all that you are going through is going to serve you at that time, serve the you you become and the work you will feel called to do.