Sunday, November 25, 2007


Tertia has asked me to write a post about my experience with grief. My perspective is unique in that I have not actually experienced a loss in the form of death. But this acknowledgment, that what I am feeling is grief, is precisely why I appreciate her thinking to include me. It was, and is, the first step for me in learning to cope with my emotions. The acknowledgment that it is normal and okay for me to grieve, even though my girls have survived. The loss that I have experienced is very deep and very real, though difficult to put into words.

It is the loss of ideals. The loss of having the pregnancy, birth, and brilliant, beautiful, "perfect" children that I dreamed of all my life. I think that every parent of an extremely premature infant deals with grief over the loss of their chance at a normal pregnancy, without the heartache of the NICU and the struggles that continue once you get home. I am sure that every parent of a child with a disability also deals with grief over the loss of the child they had imagined.

Time helps to lessen the grief. I can only imagine that once a preemie begins to walk and talk, and begins to appear more on track developmentally, the grief over the NICU experience lessens. But when your preemie survives with more significant disabilities, you have a constant reminder of your grief. After three years, there is not a single day that goes by when I do not think about their prematurity. Not a single day goes by that I am not reminded of their disabilities.

But it is getting better. The days spent crying, and not wanting to wake up in the morning, are definitely fewer and further between. The joy of having them in my life, and seeing them happy and thriving, is slowly drowning out the sorrow.

But still, there are bad days. Days when the big questions loom in my thoughts. What would Eden be like now if she hadn't been a preemie? What would THEY be like? How would my life be different? Is it my fault? These questions are so hard for me. They arouse such sorrow and heaviness and guilt. My hands tremble as I type them, and I wonder if I should really put them into words.

I am reminded of these questions at random times. Like when I am struggling to get Eden out of the bathtub, all wet wriggling 22 pounds of her, and I think "how will I do this when she is 18 and weighs 90 pounds?" Or when I am carrying her into the restaurant, and she spies Holland walking and squeals and literally tries to leap from my arms to get down and walk with her. Or when, for the third, or tenth time that day, I watch her looking on as the other kids run and jump and play, with such longing in her eyes. Waiting, and often demanding, for someone to get her and help her to join in the fun. When I am tired, and my body aches, as I crawl with her through the tunnel for the umpteenth time, or hold her on the monkey bars, or push her around on the firetruck, because...well, because she wants to and I don't want to hold her back because of my own limitations.

Having a child with a disability can be very isolating. I think grief in any form is probably isolating. Part of it is because other people don't know the right thing to say. Another part of it is because I don't know the right thing to say. I don't want to monopolize every conversation by talking about myself and my kids, but it's difficult to make small talk when such huge thoughts are looming in my mind. It's like the elephant in the room.

I've struggled to find a balance, and for me this blog, and my online support groups have been vital. This is where I can "let it all hang out." Where I can laugh, and cry, and share, and vent, and brag until I am blue in the face without feeling like I am burdening anyone. It allows me to get my feelings out, to let everyone know how I am feeling, without putting us in an awkward situation. It also allows people to reflect on what I have said, and to respond in a more supportive and thoughtful way.

I am lucky to have many awesome and amazing family and friends who are generally thoughtful and supportive people. People are all different, and not everyone is comfortable providing emotional support during stressful times. I try to be respectful of this and I definitely don't hold it against people when they say the "wrong" thing. I'm not sure there is really a "right" thing to say that will work equally well in all situations. I do know that it is important to let the person who is grieving set the tone. I hate to give a list of things NOT to say, because many people reading have said these things to me, and I honestly take them as they are intended and do not hold them against anyone. I know when your heart is in the right place, and I appreciate the effort.

That said, it isn't particularly helpful to hear things like "everything happens for a reason," "God doesn't give us more than we can handle," or "it could be worse," when you are in pain. Things like "at least she's cute," and "they never should have been saved in the first place," are even worse. "You are a stronger person than me" or "I could never do what you are doing" are also difficult to hear, because trust me, I would have said the same thing to someone else in my place three years ago.

But gosh, with so many things NOT to say, what CAN you say? You can say that our children are beautiful, that you think we are doing a wonderful job, that you recognize the blood, sweat, and tears we have put in to get where we are. You can listen to me, laugh with me, rejoice in their progress with me. I don't want your pity, but I will take your empathy. When I am down, and looking for a shoulder to cry on, you can cry with me.

Cecily, Snickollet, Alida, Vanessa, and Tertia are all doing posts about grief, and reading their posts will offer different perspectives on the topic. Linda, Sarah, and Liz have also taught me a lot about how to support and provide comfort to someone who is grieving. Thank you all for putting your thoughts and feelings into words. It means so much to many people who are looking for someone who understands.


Shari said...


I am glad you wrote about this subject. Many people do not understand that there is grief with preemies and children of disabilities. I could not have said it any better. Thank you for being honest and open. I will read the other ladies' blogs as well.


Career.Nanny said...

What an amazing post about grief. You have such a way with words. Your blog makes as much of a difference to others as it does for you.
Thank you for your post, your honesty and the amazing example you set as a mother. I'm impressed, I'm awed and I'm grateful to you and your family each day.
Happy Thanksgiving - you ARE doing an AMAZING job.
Thank you.

CP and Me said...


I've followed your post for some time now and feel like I could have written almost word for word what you did. You so eloquently captured the ongoing heartache of raising children born too soon and with special needs. Thank you for this. I will be sharing it with others because it is so right on the $.

Anonymous said...

Billie, what a strong, strong post.

Please know, that whenever I comment on how gorgeous and amazing and spirited your girlies are, that I am doing it from a place of genuine awe as I look at their pictures, and hear your stories, and their personalities shine through... and not from a desire to squelch your fears or sorrow, or change or belittle any emotion you might be expressing in any way, or somehow flatten and gloss everything over to make it all pretty. Your experience of fear and grief and guilt are utterly justified, and clearly do nothing to detract from the passion you have for your daughters.

As an adoptive mom, I get a lot of this same stuff, for different reasons. One of my favorites is when any time I express any fear or grief for my child(also a micropreemie) I am reproached with a rather anxious "But you're still glad you have her, right?"

Or I am treated very sweetly, but rather condescendingly as I cry over a section of a developmental report. NO, I am NOT your regular paranoid Mommy, I am someone whose child faces significant risks, who came to us under tragic circumstances, both through extreme prematurity and the unique tragic circumstances of her adoption. It's traumatic, and it's painful.

The enormity of the experience is so hard to put into words... Even the little things, like giving a breathing treatment to a petrified 6 month old who is thrashing and gasping from pure terror, to have to do that 3 times a day for 45 minutes each... how to explain it to someone until they're there... what it's like to see them scared or in pain, to know they don't understand, to be the source of it, to dread the exhaustion of yet another hour of holding her down and crying with her and the repetitive taking the machine apart, washing the parts, or the way bedtimes and naptimes and waking up happy are all ruined by this necessary routine... you can't.

I'm sorry. This feels poorly worded and wholly inadequate to the situation... except me trying to say in my clumsy way--- I feel with you, and for you, and you are not alone. And I was thinking, another aspect that might be helpful for preemie parents to explore... the experience of jealousy from a micropreemie parent perspective.

And finally--- I have training in this area, and I would say you are showing a lot of the signs of PTSD, and perhaps it might be helpful to look into some treatment...?



Anonymous said...

p.s. the PTSD suggestion is not in any way suggesting your feelings aren't normal or justified, or are somehow pathological-- but merely honoring the fact that clearly you've been through something incredibly traumatic and significant, something too often not acknowledged as such, something you feel responsible for and guilty about in a way that even your husband can't quite understand.

Megan said...

A beautiful post. As someone who is a respite provider for kids with various special needs. I was wondering if you are able to get funding for a support worker for your girls (here in Canada some respite hours are covered by the government... not sure what it's like in the US) not so much to have time away from your girls but to have someone to help out Eden with her physical needs someone whose only job it is is to make sure that Eden can get in there and play with the other kids... just to give your body a break... and also to give her the independence of not having to always rely on Mom or Dad to be able to get in there and play.
Sorry if this is unwanted in any way. I am NOT a parent of a special needs child.
I thought of it because I recently attended a wedding with a family I work with... just to be an extra set of hands to help out with the kids.

Your kids are adorable and amazing and I LOVE hearing about them :)

Katy said...

I think you put this just beautifully. Mine is was not premature, but I grieve that perfect birth and my idea of what having a child would be like. I greive because I know that things will not be easy for him.

I think you're doing an amazing job, and am in awe that you do so much and manage to do for others as well. You're quite a woman.

BusyLizzyMom said...

A great post. People don't understand that parents of surviving preemies with disabilities also grieve. I find people think that we should just be happy with the outcomes our children have. I know that things could have been so much worse for us and that it is just a blessing to have Elizabeth home with us as some parents will never be able to experience that. It still doesn't help my heart when I think about what challenges will be ahead for her and how things are more difficult for her. When a child has a terminal illness everyone gathers to support the familiy but when disability affects a family the family is isolated. The social isolation for us has been difficult I feel like I have nothing to talk about other than Elizabeth and our daily issues and am often too drained to participate in our previous social circles.
Joining the on-line support group has helped my psyche and has led me to meet inspirational moms like you.

23wktwinsmommy said...

I grieve the traumatic premature birth of my twins probably on a daily basis. Sometimes it's not in the front of mind, but it's always there. Sometimes I cry about it, I dream about it, I write about it. Even today I was watching MSNBC and there was a show on the homeless. One girl was pregnant, smoking cigarettes, and abusing drugs, all while living on the street and not trying to find shelter. She made it to term and delivered a healthy baby. I was mad and hurt. I forced myself not to cry when thinking about how I did everything right and yet my children were born 17 weeks too soon and will live with the repercussions of that for the rest of their lives.
I know I suffer from PTSD, and I think my "therapy" comes from blogging and talking/connecting with other preemie moms. Although it's not "professional" help I think it is far more therapeutic; like you said Billie, these blogs and support groups make so much difference. I hope you know reading/responding with you and the other preemie moms is just as therapeutic as a reader as it is for the author. I am so thankful for moms who blog about their micro preemies, it makes me feel so much less alone.

Jennifer said...


If you ever need anyone to talk to who feels your struggles....feel free to email me. Rebekah is coming over every I am kind of a part time caregiver to I know how you feel (partially...Beka would have to be here all the time to have the full experience).

email me when you need someone to talk to :)

Holly said...


I've just recently found your site and I love you post of grief. I too grieve daily for the loss of our 'normal' pregnancy, and baby.

Our baby Caleigh was born at 28wks & 6 Days, with Gastroschisis, weighing 2lbs 2oz on August 15th of this year. She is still in the NICU with months to go. I grieve everytime I see a mom get to take her baby home from the hospital and this happens daily. I grieve the fact that I wake up at 6am not to feed or cuddle my baby but to get dressed and drive 30 min just to share my baby's time with nurses, doctors and surgeons. Everyday is a grieving process that I hope gets easier as time goes on.

Thank you for your courage.

Caleigh's blog:

Shannon said...

Thank you for writing this post. I konw that you probably really needed it but it is such a wonderful thing for you to acknowledge and validate this loss of ideas. It is a tricky thing for a person to talk about loss when there has not been a death. You are not sure if you even have the right to feel this way and my big hang up- am I allowed to express this feeling of loss when it was my body that failed to do what it was made for. I was "lucky" in that I spent time with a wonderful social worker during a time of loss many years before Ben was born and what she gave me was a simple statement, it's OK. What ever I am feeling is mine and I have every right to feel it. There is no right way to experience loss and no one can undo what you feel. So feel away, it's OK.

Shannon said...

What a beautiful post Billie! I totally relate to everything that you said and I know that it is hard for many to help us deal with what our lives consist of. I have come to the conclusion that most of the time, people just don't know what to say. And sometimes saying nothing is better than something.

My biggest complaint is that I hear all the time "it could be worse." It is the absolute most awful thing to say to a mother of a special needs child. Yes, it could be worse. But hearing this just makes me think that what I deal with isn't a big deal. What I deal with doesn't matter. Because you know what? Things could be SO much better. That comment just irritates me to the core!!!!

Anyhow, I am so glad that I have found such wonderful, understanding moms here in the blog world. It is so great to be able to talk to people that "get it."

carolinagirl79 said...

Wow you can write well. That was great. I feel for you and I'm cheering the girls on (and you and your husband also).

Missy said...

I am so glad you talked about this, while my Ava was not as premature as your children ( 34 weeker ) she has been diagnosed with Autism Spectrum Disorder, I can relate to a lot of what you go through, and it is most certainly a grieving process. Thank you so much for writing about this. Such an amazing post!

Anonymous said...

WOW! I have just finished reading your blog, in it's entirety...and I just wanted to let you know how awesome and beautiful your whole family is! I really appreciate how honest and open you are about your struggles...they make all of the bright spots just that much brighter! You make me want to be a better Momma:) Thanks!

Jacolyn said...

Billie, I have to say I admire you SO much. Not just because I see you as such a gifted, caring person and mother but also because you are so real and not afraid to voice your pain. Thank you so much for sharing this.

Anonymous said...

This is a beautiful essay! I can relate to what you said in many ways. (I found your blog via a link recently, and check in from time to time.) I have almost 9-month old twin girls who were born at 29 weeks due to ttts. One was born with a grade IV IVH and has developed severe PVL, an atrophied cerebellum, and microcephaly. She is blind (cvi) and has cp. I have often reflected upon the fact that my feelings are as the stages of grief -- and I realized that this grief is valid because I have lost the typical child I thought she would be. Thank you for your inspirational optimism, example of love toward your children, and willingness to admit sadness and frustration. Your girls are priveleged to have you as their mother.

Andrea S.

Rebecca said...

Thank you so much for writing this. My daughter Caitlyn is 4 and has Rett Syndrome. I often have people tell me it isn't grieving because she isn't dead. She developed normally until she was 15 months when she slow started to lose a lot of skills..The worst comment I ever heard was "At least you had 15 good months with her." To which I reply, "well, actually I have had 4 good years with her! and counting"

Anonymous said...

damnit, you are such a terrific writer. and god bless yr sweet family.

Patty said...

How beautifully worded this post is.

Eden and Holland couldn't have better parents.

abby said...

Every time I read your blog (which is pretty much all the time :-) ) I think to myself that you couldn't possibly write a more eloquent post than the one which I just read. And then, of course, you do precisely that. Anyway, you have a knack for touching on what so much of us feel and yet haven't the words for, and I am very grateful for that.

Have you ever thought about writing professionally? Just wondering... I'd buy your books (and still read the blog!)

Viscouse said...

Billie, my respect for you, and your parenting, and your writing grows with each post I read. What a gift to be able to put into words all the thoughts you have in such an understandable, gentle way. I really do appreciate reading posts like this, as they help me understand much of what I am feeling.

As has been said, I could have written parts of your essay word for word (not as well, but you get my drift), and feel many of the same things.

If I can, the only thing I'd like to add is that while time does tend heal somewhat, I find there are things I am intentionally holding on to in regards to Galen. I find that I value my sadness and grief, as it is part of him, and the memories of him are so very little, every memory means that much more.

Thank you Billie.

Korrina - Lena and Kassie's Mom said...

I know exactly how you feel. I too greive every day for what could have been, what should have been and what I will never know. Most days I bounce back easily just by looking into the sparkling eyes of my two beautiful girls. Its when times are tough or when I am around other moms whose kids are younger than mine and have better motor control that it takes a little longer to bounce back.

Thank you for posting your true feelings. You often enable me to really understand some of my own feelings.

Sarah Furlough said...

What a great and moving post. Your depth and eloquence never ceases to amaze me.

We (parents of micropreemies) grieve in our own way, and we learn from each other too. It's so comforting to know that there are people out there to lean on and who can relate, in some small way, to our own stories.

Thanks for being such a great source of support, and one of my biggest cheerleaders. You are quite an amazing person, Billie!

Shannon said...

Hi Billie,
Although I stop by I usually dont comment. I have commented before though. Still reading your blog and you inspire me to be a better mom. should be applauded for all of you and your husbands hard work over the years. Here's to you, your husband and precious girls!!!!!!
Shannon in Austin

Anonymous said...

I have been reading your blog for a while and love it! I have a daughter who is a 28 weeker and two full term children. That doesn't change the fact that I still grieve her early arrival. I look through their baby boxes of memories and it makes me sad that my daughter's box is full of hospital bands. With that said, my preemie is the happiest of my children. She smiles constantly and enjoys life to the fullest. Your girls are beautiful and look like they love life. There is a difference between survival and living and your girls are living life.

Thank you for sharing your honest opinions. You inspire others to do the same. There should be more people in this world like you.

Mete said...

Beautiful writing, and right on the money as always.

Personally, nothing bothers me more than the "everything happens for a reason" line. When I hear stories like the Baby Grace abuse case in the news right now, I want to ask them what reason there could possibly be for such suffering? Sometimes, horrible, sad, difficult things happen and there is no reason. Don't feel the need to find one. I'd rather hear you echo my sentiments with the truth: "This sucks. But I'm here to help you deal with it."

My only other advice would be to accept that things will change. The grief of dealing with a disabled child changes frequently as they grow. I often find myself thinking I'm over it, or through the worst of it, but then Ethan gets older and his symptoms and issues change, and it's grief anew again. And that's really okay.

Anonymous said...

Well said, thanks Billie!

Anonymous said...

i found this blog when i was pregnant. i don't even remember what my search was that led me here. ruby was born in june, and i still read every entry you write. my baby was not premature. but i am compelled always to check on your girls, to admire your marriage and your parenting, to hate but love holland's dramatic crying, and to hope that my daughter grows up to have a smile like eden's.
oh, and by the way, i hate blogs. usually.
thank you and oh my GOD great job, they are beautiful, you are a hero.

Anonymous said...

Billie, your blog and honest sharing is a huge blessing scattering seeds of love and change which will blossom where your lives have been shared. You have a beautiful family and you are making a difference in this world. You are a success! love gma sharon brunet

Anonymous said...

As always, I love reading your blog and watching your girls grow. I am not a parent of children with special needs. I am an individual (as I mentioned before) who grew up with a disability (Asperger syndrome). Although my disability is different than those of your girls, most of my struggles have been social and emotional. I will say that I share some of the same emotions you do. My life has been a combination of great joys and great frustrations (often both at the same time.) Accepance is a lifelong process and it was made more difficult for me by years of social rejection by my peers. Overall, I consider myself to be a happy person, probabally about 95% of the time. I wrote this poem at a time I was struggling with my emotions and acceptance of my disability. I believe it would also apply to you and your girls.

Am I really going anywhere

Or is it an illusion

Like standing on a rock on the beach

Watching the water flow towards you

You feel you’re moving forward

But cover no distance at all

Or am I like the inchworm

Who climbs partway up a vine

To be pushed back by the wind

To begin its ascent from an earlier point

It will reach its destination

Much later than expected

But still make it

Through major progress

And major setbacks

My dreams remain

PS I hope I am fortunate enough become a mother someday and have children and a husband as wonderful as yours.

Stacy said...

What a beautiful post, Billie.

Anonymous said...

hi, billie-- you post is so well written and so true. i have preemie twins ( 30 weeks gestation) and i really think we all have some degree of PTSD from the birth and NICU experience. your girls are lucky to have you.