Sunday, September 14, 2008

(Not so) Open letter to my well-meaning friends and family

Posted by Anonymous


I. GET. IT.

No really, I truly do. I understand exactly how lucky I am and I thank the universe for every single moment with the munchkin, and for every single breath she takes. What part is it that you think I don’t understand? She was born at 25 weeks and weighed one freaking pound!! Do you think maybe I missed that part? Do you think I was sleep walking during the 4 month’s we spent in NICU or that I somehow forgot?? Do you think I just glossed over all the information on future outcomes for children in her circumstances? Maybe you think I don’t look around at the other children at her follow-up appointments and see what could have been? Are you aware that there are still moments when I watch this precious gift sleeping soundly and drift to that dark corner of my mind remembering sitting by that isolette trying so desperately to force this child to take her next breath by willing it - thinking that somehow I could give her the energy to take that next breath and live that next minute…

And now I watch one and a half years later while this beautiful, living breathing child plays and runs around after her brothers. She’s not just living, she’s thriving.

The boys have gone upstairs, maybe to get a game, more likely to get a minute to themselves and she runs after them but is stopped by the gate at the bottom of the stairs. Her eyes fill up and her bottom lip starts to quiver. I’m watching her face and waiting for the wailing to begin. Hold on a sec though – she blinks away the tears, her brow furrows, she gets “the look”…you can see her little mind working and the look definitely says “Oh I don’t THINK so” and then she’s yelling “Guys!” at the top of her lungs in that demanding little sister who “knows” that she’s the queen of the universe voice. I try to call her over and she shakes her head “No” and calls again. When her big brother comes running and picks her up over the gate she looks back and her expression definitely says “Ha! Told you so!” then she turns her attention to her brother and starts babbling in a voice that leaves no question that she’s giving him hell for leaving her downstairs in the first place.

It’s just a mundane family sort of moment, one that might even drive me batshit crazy on some days, but as I’m watching her in my mind’s eye the scene is superimposed with the image of that tiny raw, red newborn hooked up to so many machines, and tubes and wires that you could barely see her. I have a feeling that although the nightmare image has faded with time that it will always be there as I watch this amazing child grow, like my own little watermark on her life that only I can see. And I can’t believe that I am privileged to share this little moment with her and that I get to see that little bit of humor peeking through “See Mommy – they’ll do whatever I want” – she honestly thinks it’s funny !

So, like I said. I. GET. IT. More than you could possible know.

But no matter how lucky we are, no matter how many blessed moments we have there are also the more shadowy times.

She’s fallen down and pulled a chair down on top of her and left a bump on her head. She screams, and arches her back, and won’t let me hold her to comfort her. She squirms away from me and crawls to a corner of the sofa and hugs herself into a ball to calm down and I watch with my heart breaking because my baby hurts and I can’t freaking comfort her…

We’re in the ophthalmologist’s office sitting with her on my lap in the exam chair while I hold her with one arm in a death grip around her head, the other around her thrashing arms, and Dad holds her feet to keep her still while the doctor examines her eyes – I don’t know which is worse, the kicking and screaming or when she finally gives up and goes limp in my arms, disassociating from the exam that she hates so much…

She’s in her high chair at dinner time and has just finished eating her pureed dinner, but she spies what we are eating and wants to try. I sigh, and try one more time to give her a little piece. She’s so freaking pleased and excited, she plays with it for a second and then pops it in her mouth just like her brothers, she’s even chewing this time (that’s new and VERY exciting) and I start to think that this might be the time – but then no, here comes that familiar panicked look and she’s gagging. I manage to get her to spit it out and give her a sip of milk, letting her know how proud I am that she chewed this time, that it’s OK we’ll get this, reassuring her brothers that everything is fine, and my 8yo puts down his fork and says “Mom – it’s not fair” with tears in his eyes…


See, that’s where we are right now. It’s not that we don’t know that we are so very lucky; it’s not that we don’t realize how much worse it could have been. It’s not like we don’t know that these are all really little things in the bigger picture…but there are days when it seems like the little things are never going to end. There are times when as much as I couldn’t picture a moment without the wonderful child that she is, exactly the way that she is, that I mourn the carefree easygoing child that she was in my dreams before my pregnancy started to go down the toilet.

And there are days when it’s just not fair. This wasn’t supposed to happen to her or any child and the fact that it did and that it makes things more difficult for her sucks sometimes OK? So if I complain, or if I seem sad about something that you judge to be “nothing compared to what could have happened” PLEASE refrain from telling me I don’t know how good I’ve got it or how lucky I am, or how worse someone else has it – I get it already…

21 comments:

Anonymous said...

I hear you loud and clear....we have 2 beautiful sons...our youngest we adopted 2 years ago...He is Three now. Yes he is amazing, yes he is special, yes we are lucky, yes, yes, yes. But, sometimes he wont let me touch him....sometimes hes screams and screams...sometimes he says he doesn't like me...sometime he absolutely crushes my heart. Usually he is happy, smart and affectionate...but there is more going on than that. I am tied of not being able to tell everyone the whole story because they just want to tell me how lucky I am. I am capable of appreciating what I have AND being honest about the challenges. Nobody wants to hear about the darker side...and they have an easy out with the "it could have been worse" ...so they take it.

Anonymous said...

I don't know what to say, but I want you to know that I'm here, listening; and I understand.

Anonymous said...

Some days really suck. You have every right to feel discouraged on those days. You're a prent, not a saint. Tell the others to kiss your ass.

Anonymous said...

Uh, that would be "parent". I'm tired, too.

Crazed Mom said...

No one has the right to judge you. Having a children who diesn't fit the typical parameters is challenging, frustrating and exhausting. Don't feel guilty if you'd like a break or you wish things were simpler. You're human. It isn't fair. I know my youngest child died. Of a rare disease one doesn't know they carry unless they have a child with it. It sucked. Still sucks many years later.

It's ok. However you feel. It's ok. Hugs.

Crazed Mom said...

I'm in no way comparing our situations. I'm just saying I know how unfair ;ofe and death can be. I won't judge you, ever. I don't do that.

Half-Baked said...

Original poster here.

Thanks to HBM for posting this and thanks to everyone for their support. I can’t really begin to tell you what it means.

I really do think that most people mean well, and agree with anon 8:20 - they are stopped short by the truth when I choose to share, it makes them uncomfortable, and they say the first thing that will make it go away – so I don’t usually share it.

But there are times I can’t avoid it, this week is the latest example. My daughter is having surgery to correct strabismus caused by her prematurity. It’s supposed to be a fairly routine surgery (although my little one has a habit of making a mockery of things that are supposed to be routine), but I’m scared, confused, upset and yes...pissed off that I couldn’t carry her to term and keep her safe from all this…it’s just the way I feel. Now I don’t go around dumping this on everybody who asks, (well except for here maybe) but people can tell that I’m upset when I talk about the surgery and there are just a few who really have to play that “Suck it up-you don’t know how lucky you are” card for everything they're worth…it’s just so trying and adds more pressure.

Crazed Mom – don’t worry, I felt empathy and support from your comment not that you were comparing or judging.

Karen

lavandula said...

i'm so sorry that people are making you feel that way.you have every right to feel how you are.its hard having a premature baby especially when they have problems.my youngest was born at 32 weeks and i thank god that all her problems she had were resolved. and none were extremely serious but as a mum you still worry.you still wonder what you did too make her come so early.and people making you feel invalid are not helping telling you to suck it up isn't helping so i'm sending you a big hug you are not alone

Lindsay said...

Best of luck with the surgery this week, poster.

Crazed Mom said...

Karen~I'll be praying that your daughter's surgery is successful and complication free. Super Hugs

Anonymous said...

Oh, god, I'm so sorry that anyone would say that. They have no idea.

Kandee said...

"You're lucky, you could have had it worse" is a poor listener's escape route. If they were truly good at listening and comforting, they would hear both your joy and your pain.

Gemini Girl said...

I get it.

Speaking as a NICU mom, I know.

My girls were born at 30 weeks... which seems so wonderful when you compare it to 25 weeks... although i was about to give birth at 25 weeks.

It's not easy- it never is. But we just have to take it one day at a time. that's all we can do.

Anonymous said...

Heavens, I wish we were all better at really LISTENING to each other. Just because many horrible things *didn't* happen, it doesn't make your or your girl's or your family's suffering any less.

Sending great sympathy your way and praying for more discerning friends who can listen to you w/o judging. And I'll be thinking of you guys regarding the surgery. NO surgery is ever minor if it's your kid! :)

b*babbler said...

Yup - I hear you.

The comment that nearly pushed me over the edge?
"I'm shocked that she's doing so well... you're so lucky. *I* never really thought she'd be born alive".

Not to mince words - but gee, could you f*ck off now?

So yeah. I hear you. Loud and clear.

Anonymous said...

You have every right to feel the way you do. I don't know if this is the right word, but I'm gonna use it anyway. You need to grieve. Grieve the pregnancy that wasn't perfect, grieve for the baby that has to go through "more". Give yourself lots of room to feel what you're feeling. No one knows what you're going through. Some people can relate better than others, or share similar experiences, but no one KNOWS. Sometimes you need to pull the "hurt" out of hiding, feel the pain and the fear and the anger, then put it back away again, until the next time.

Take care of yourself, so you can take care of your kids.

I'll be thinking of you.

Half-Baked said...

Just wanted to thank you all again for your comments and support.

The surgery went well. We won't know if it "took" or not for a couple of months but she came out of it just fine - finally! something "routine" that actually was uneventful for a change.

Karen

Amy said...

People just suck sometimes, don't they? I will now be keeping up with your blog. That made me cry.

Vicki said...

I had twin boys at 30 weeks, one 3lbs 10oz the other 1 lb 7oz. They were both in the same situation your little one is in. I can tell you this much. It does get better. Just remember when you're frustrated, one day you will be celebrating all the little triumphs. And you know what? The first time she eats something like that and doesn't gag, have a real life party. Just for you and your family. It really is something worth celebrating. Just the fact that she put something in her mouth and chewed is something worth celebrating. Please don't let anyone be mean to you about feeling frustrated over the things you can't control. I know all about little ones missing the milestones most babies pass by their age. Don't let it get you down. I would love to be there to help you celebrate. Email me if you would like to talk about any of the challenges of raising premie babies. I'll talk to you as long as you like and I'll never tell you to grateful because if you're like me, you most definately are.
fetchthis@hotmail.com

Anonymous said...

I get it too.
It gets better.
Mine couldn't eat real food without gagging until she was over 2 1/2. But now, its old news. Life goes on, and all those things get easier.

Anonymous said...

I hear you a million times over. I think it would be so much easier for mothers if we were allowed to complain, or at least to talk about how we really feel without being made to feel like bad mothers. Sometimes it sucks. There are fabulous times, but there are times that are the opposite of fabulous. Thank you for your post.