Thursday, October 04, 2007

Perspective

It could be worse. This is a topic that has come up on my blog, as well as in various other forums that I am a part of, several times in the past three years. How does a micropreemie mom react when their acquaintances or even friends are complaining about their full term healthy kids? They're not walking at 14 months. They're not talking in sentences at 2. They're picky eaters. They won't sleep through the night. Moms of twins complain about how much work their two normally developing kids are. Pregnant moms complain about how uncomfortable they are at 36 weeks, and they wish this baby would "just come already."

How should moms of kids with more severe disabilities react when they are barraged with the worries of other preemie moms worrying that their baby might have CP, when they are already holding their head up at 6 months? Or stressing out to the point of their hair falling out over a language delay at 15 months?

It's all a matter of perspective. I admit to having lost the ability to relate and be empathetic in certain situations, and I am sure that I have snapped, or said something that I probably shouldn't have more than once. More than once I have been guilty of at least thinking "stop whining," or "get over it," or "what in the world do you have to complain about," or "FOR THE LOVE OF ALL THINGS HOLY, COUNT YOUR BLESSINGS AND STOP WASTING SO MUCH ENERGY ON SOMETHING SO INSIGNIFICANT!!!" Most of the time I am able to bite my tongue and remind myself that their feelings are valid for their life and their situation. And they are. It's NORMAL for people to worry about their kids, even the little things. Had I not been thrown into the life that I have now, I would most certainly been one of those moms. I can be forgiving.

At the same time, I feel that people in general should be considerate of their audience. I have an analogy that I think most women can relate to... You see, almost every woman has some complaint about their body. They think they are too fat, their nose is too big, their belly pooches out too much, their boobs are too small, their hips are too round, etc. etc. etc. The list goes on and on. But it would be rude and inconsiderate for a woman of average or below weight to show up at a support group for obesity, and complain about being fat. It may be very real and true to her. She may be miserable and unhappy about her weight or her body and it may affect her life to a great extent. But it is still rude and inconsiderate of the audience. How should the women in the group react? Should they try to be empathetic and supportive of the skinny woman's feelings? Or should they put her in her place, and give her some perspective?

I wouldn't join a support group for moms of kids with CP, then moan about my child not walking until they are 18 months old. They have children who will never walk. I wouldn't talk to a mom who lost a twin about how hard it is having two. She would do anything to be in my shoes. I wouldn't complain to a preemie mom about how miserable my third trimester has been, and how uncomfortable it is to be 8 months pregnant. Really, it will just make her want to stab you in the eye!

Blogs are an interesting thing. When you are writing on a blog, you don't have the ability to really know and choose your audience. I think, on your blog, you can moan and groan about anything you want. That's what it is for. Your audience chooses you, and most of the time they do so because you write about something they can relate to, at least on some level.

I moan about things on my blog that I just wouldn't in other places. I don't complain about Holland being hospitalized with every little cold to someone who's child has cancer. I try not to complain too much about the severity of Eden's CP with someone whose child has severe quadriplegia, or impaired cognitive ability, or is nonverbal. I wouldn't complain about Holland having to wear her patch, or glasses, with someone whose child is blind. And I try not to complain too much about what terrible eaters my kids are directly to someone whose child does not eat by mouth at all.

At the same time, I don't want to lose perspective to the point that my friends can't talk to me just like they would any other friend. There will just have to be some give and take, by myself and by the people I encounter who know my story. I will try to remember that your feelings and worries about your healthy full-term kids are valid and very real to you. But you should also be considerate of your audience and not go on and on about how your kid who is in the 95th percentile for weight is a picky eater! At least use a disclaimer, such as "I can't imagine what you are feeling, because I feel so incredibly worried about my 35 weeker spending 5 days in the NICU."

It could always be worse. I need to remember that too. I am so blessed in so many ways. Eden is learning to talk. She has good use of her hands. She seems to be pretty bright in terms of cognitive ability. Holland is falling less, and is starting to run a little more smoothly. She can do a somersault. They are both improving in their eating. They both interact so well, and are interested in so much, and are cheerful and friendly and very happy most of the time! I am so very lucky. But you know what, even if they could do none of these things, I would still be lucky. Someone else will always have it worse, and even they might still be lucky in so many other ways. It could always be worse. But maybe it could be better too. Our feelings are all valid and need to be shared. Let's all keep it in perspective.

Holland's turn to take a picture...

Now it's Eden's turn...

Notice the different personalities? LOL.

75 comments:

Kathryn said...

Billie - very well said.

Antonia said...

I agree...very well said...and Eden's picture is labeled as Holland...Holland as Eden...LoL...but I could tell you were tired at the end of the post. *hugs*

Anonymous said...

I agree so much with what you said, Billie. It needs some thoughtfulness and give-and-take on both sides, for the talkers/posters and the listeners too. It's easy to misunderstand and to judge others unfairly, especially on blogs where we can't read expressions and tone of voice.

You write beautifully and eloquently about your children, and your joys with parenting them, and your concerns. I doubt you offend or hurt anyone who reads your blog regularly. And I hope that you are not much bothered by people who remind you to be thankful for what you have - of course you are!

It's Thanksgiving weekend in Canada, and we are all counting our blessings. I will pray for people with high-risk pregnancies, babies in NICU, preemies and sick children, as I often do. And for those who are waiting and longing to become parents.

- tripleblessings

Ivanna said...

All I have to say is, "Amen!", Billie.
Well said.
Have a nice weekend.

Ivanna

Stacey said...

That is a dang good perspective. I do find myself whining about Ace sometimes (OT today sucked) but I have to remind myself that it could always be worse. No matter who you are, how bad things are for you, things could always be worse.

My friend Kate had kind of a rough pregnancy and could barely move by the time she was 38 weeks. She was complaining to me once, which I understood, because I can only imagine (literally) that it'd be very uncomfortable to be 38 weeks pregnant, then she said "Know what I mean?" I looked at her all serious and said "No, no I don't." The look of mortified horror on her face right after that had me on the floor laughing. Southern girls are so easy to trick like that.

Looks like Holland wanted the camera back. Future photog?

Mel said...

giGreat post Billie!

Mel said...

I meant to say "Great" post;)

Sarah Furlough said...

Wow, you have said in your post so many things that have been running through my mind lately! I know I could NOT have said it better!

Ani said...

great post!

Anonymous said...

Billie:

I agree wholeheartedly with everything you said.

Shari

Cora said...

I couldn't agree with you more Billie! Very well said.

Kendra Lynn said...

Wonderful post...sensitivity to others' feelings should always be a talked-about issue.
You are blessed...so am I...and we know it.
Love you, Billie.

Kendra

Anonymous said...

I am so glad that you said yes, you say things so well!

MA

P said...

I have to smile...
A couple of weeks we attended a cousin's wedding, and learned that the bride and the groom's sister are in a contest to see who can get pregnant 1st. (Groom's sister, who had a child 3 yrs ago, married the father 2 yrs ago, and just had her wedding 4 months ago.) In any case, after the 3rd time of hearing this, I finally said "I wish you the best, it took us 3 years."

Some people aren't able to look beyond their own noses to see who their audience actually is. sad.

Thank YOU for the reminder, that we all need to be aware of what we're saying and to whom. :)

Leanne said...

I'm going to delurk now to tell you that this was such a great post. Thanks for the words, and have a good weekend.

Your girls are adorable.

Leanne
mom to Lucas, 28 weeker

Viscouse said...

Wow. that post ranks up there as one of my all time favorites. What a great slice or reality. I am very grateful you are able to put all that to text with such succinctness.

I agree about the bit with the blog as well. It is MY outlet, which can be private, but I choose to share so that others can relate if they choose. And I am grateful for every comment that empathizes, or finds joy in my posts.

I think it's more valuable if everyone realizes that everyone is different. Some are better off, some are worse off. And like you said, people should be cognoscente of that when talking to ANYONE.

Mete said...

I LOVE this. You're an awesome writer, but this has to be one of my favorites of all time. Well said!

Triplet Butterfly Wings said...

Billie,

OMGoodness...I so relate. I just had a failed Frozen Embryo Transfer a few weeks ago. Well as I sat in the waiting room of an infertility clinic this lady was on her cell phone talking very loudly. And she continued to talk about her kids and how she called some other kids triplets...blah, blah, blah. It NEVER ended. You absolutely DON'T sit in the waiting room full of women who have been scarred by infertility and boost about your kids...you just don't. It took all that was in me not to grab her cell phone and throw it out the front door. UGH!

Or, on my other blog a few weeks ago this lady posted for all of us to pray for her sister because her sister was in labor at 32? weeks. It made me mad. Yes I am sorry that your niece/nephew will be born early but 32 weekers do fine, so please. Most of us are bereaved moms on the site.

Sorry to go on and on. I just SO understand. I really do.

Love,
Rachel

Jacqui said...

Sorry. Stuffing up your comments.

Are you saying that the girls took the photos? Very talented if that is the case. Master C usually cuts off heads.

Great post Billie.

abby said...

So very well put, Billie.

The girls' photos are great, too. I can't believe how well framed they are.

baby james said...

I agree with you on this one for sure. I have a friend who has a full term 4 year old who got sick a few months back and would not eat, she was stressing and complaining this to me, she did say gosh now I know how you feel. I said yes but at least you know why your child wont eat and as soon as he is feeling better what 3 days tops he will start eating again probably better than before he got sick. And yes it could be worse, but like you said are issues are our issues and for that it is at the time of the issue, bad. This is my mother-in-laws favorite thing to say and has been saying since our NICU days, I really do not find it comforting. Our children have been through more than most people have in a life time, and survived for that I am forever grateful. But no one understands the life of or the parenting to a preemie/micro-preemie unless they are the proud parent of one. Tracy

Tertia said...

What a fantastic post Billie.

Belle said...

Billie,

Great post! I know I'm guilty of whining about everyday things that really shouldn't matter. The sad part is, I should no better. I remember wanting to slap people when I was trying to get pg and they would whine about being pg or about their baby. Yet, after we adopted Connor I find myself worrying about dumb things that in reality aren't that big of deal. I will definately consider my audience next time I start to complain.

I love to read your blog because I think you are such a strong person and I definately can't imagine all the things you worry about on a daily basis that are definately something to worry about.

Hopefully this post will reach out to others. I think the problem is, most people don't really stop to think about what they're saying, or definately who they're saying it too.

Take care:)
Sherry

Anonymous said...

Excellent post!!

I have a 5 year old who is completely non-verbal, non-oral, can't walk or crawl...he is pretty much 100% dependant on me...and it aggravates me to no end to hear my friends complain that their children are into everything or that they won't finish there meals or what have you.

YES...i realize that's part of the "normal" parenting experience but it's not my experience. I guess sometimes I wish they would remember who they're complaining to. Every once in a while I do remind them just how BLESSED they are and that I would LOVE to have those complaints. It usually shuts them up...for the moment.
*sigh*
What can you do??
Anyhow...thanks again for writing that.
I love the pictures of the girls.
Shannon

Anonymous said...

Love you Billie :)

Jules

BusyLizzyMom said...

Billie,
Excellent post and I loved your analogy. Parents of 'normal developing children' do experience worries and stressors with their children but not as frequent and as life changing as what we go through on a daily basis. Parents of normal children also don't experience the isolation that we experience. I have lost a very close group of friends due to this insensitivity.
You are very right that things can always be worse and I always tell myself that when we have had a rough day.

Kim said...

Eden's hair is getting so long!

Sorry, just an aside there. That is an EXCELLENT analogy. In fact - I live that analogy! I am overweight, and it IS SOOO annoying when people who are of average weight complain to me about being overweight. Seriously people. You have NO idea.

Another example is a friend of mine. Her husband just died at 35 due to brain cancer. It would be heartless, then, for a woman to complain to her about HER husband - because Amy would do anything to have her husband back, regardless of the "husbandy" things he might do that in normal life, she might complain about.

Good analogy. And it's a good reminder for everyone, huh?

Jacolyn said...

Great post! You said it much better than I ever could. I'm afraid I just came across as bitter. I'm really not bitter, I'm just tired of those who have no perspective or tact. Thanks again for a wonderfully written, insightful post! Jacolyn

Patyrish said...

I don't think anyone could have said this better than you have. I too have though some of the same things myself when someone has complained to me about something that really isnt that big of a deal. I like how you explained about how we should be more aware of who we are talking too when we say certain things. Sometimes people tell me things and I think "are you kidding, do you know who you are talking too?" Then much like you I stop myself because YOU ARE RIGHT to people that don't live the life we live, those things are LARGE problems.

It truly IS all about perspective.

GREAT BLOG ENTRY!

Anonymous said...

I love your blog and read it frequently. I agree with much of the things you've said and do not wish to be argumentative or hurtful.
I must respectfully say however, that in my opinion you just can't quantify someone else's anxiety or suffering. Everyone is different and reacts to situations differently. What seems a terribly tragedy to one person may just be a blip in the screen to another. It is not our place to judge or try to understand. We all view life from our own lens, with our own biases and baggage.
Just a bit of a different perspective...I do agree though that people should be sensitive about what they say to anyone who is suffering.

Shannon said...

I once again applaud your ability to voice what so many of us feel. I am often put in a position to wish those around me would consider who they are talking to BUT at the same time I have also been in a position to bask in the ranting of dear friends and realize that they don't see the disability anymore. It is all relative. We are given what we can handle. Some just need to be stronger than others. Thank you for sharing your strength with us

Anonymous said...

Great perspective. I loved reading this post! My dd isn't growing normally and is a very picky eater well anyway point being I wouldn't complain to you about it but would complain to someone who's child scarfs down three meals a day. On the flip side I hate when people complain to me about their kids not eating when their kids are on the growth chart and seem to eat fine to me. People can be so insensitive to other's situations. It is just part of the self-absorbed world we live in. Where our own issues/problems seem to make us become immune to empathy for others.

Laura: Preemie Lily's Mom said...

I understand your feeling here. It is so hard to listen to someone complain that their daughter spent "a whole day" in the hospital, when our daughter was in the NICU for 3 months. You came to the right conclusion also, that every parent's worst experience is the worst for them, and therefore legitimate as far as compassion goes.

I just listen to other parent's worries and complaints and be supportvie while trying to not scream "Try living in my shoes."

Warm wishes and hugs to you, your husband and your girls. And thank you again for sharing your story. Reading your story helps me when I think about all that we have gone through, knowing you've faced greater hurdles.

Lisa said...

And then on the other hand, sometimes I'm afraid to post things that my children are doing b/c I don't want to hurt anyone's feelings...

Love this post!

marleys mom said...

Billie, Love it! This is something us moms deal with by having such special kids. I know I have had enough at times and have said things like I hope my kid jumps on the couch or I hope I get to chase her around the house. It kills me when it is your friends too. They know what you are going through and have gone through, but they complain that there kid is walking at 10 months old. I might have some scars on my tongue for all the times I didn't say anything.

We have to remember we are mothers to SUPERHEROS! It is a tough job, but our rewards are SO HUGE! We really are the LUCKY ones. We inspire others too.
Love you all!

Emily said...

You have such awesome insight. I always come away from reading one of your blogs nodding my head in agreement. I feel so awful complaining sometimes. I know that compared to what some people go through, the struggles we're enduring are nothing. I should be focusing on the positive things going on right now, the small improvements Dakota makes every week. Thank you for helping me to keep my perspective.

Anonymous said...

I agree, well said Billie. You are doing as well at motherhood as you have at all things since I have known you, I am blessed to have shared a small part of your life. Love ya, Linda

Laura Gilmour said...

I remember when I was in grade six and a neighbor child's mother said to my Mom after a troubling incident, "You don't know how hard it is to have a child with a learning disability." My Mom was livid. I have Asperger syndrome, and often people would assume that because I was doing well academically that any of the issues I had were my fault. At the time I rarely made eye contact, talked excessivly about special interests, could not follow a conversation, and had frequent temper tantrums.

I agree that there is often a lack of empathy or thought in comments like these. However, if people are close enough friends they should be able to share all their concerns, even if one has less serious concerns than the other.

I have a close friend with a more severe form of Asperger syndrome. However, I am not afraid to share my own milder concerns and frustrations with him, because he is a good friend of mine. Many of the issues we go through are similar, so we are able to understand each other.

Or in the case of your twins, Holland is probabally going to become frustrated when she has difficulty with certain motor tasks. I think it would be perfectly valid for her to express frustration, even though her disability is less severe than Eden's.

If someone feels they cannot talk about their concerns/children because they might offend the person they are talking to, it may distance the friendship.

Also as far as prayer requests, I think they are always valid. For isntance if someone posted on your blog asking for prayers for a preemie born at a later gestational age than your twins,, I still think that would be acceptable. You would be able to use your experience as a resource to them and offer them support and possibly reassurance.

However, I think obsessing about any issue/condition to the point of being unhappy all the time is self-destructive and difficult for people to listen to.

I volunteered in a classroom with children with autism, worked at a daycamp and did respite. In these situations, I have ecountered families with children with special needs who never learned to accept the fact that their child had special needs and constantly felt the need to talk about how miserable their lives were rather than taking the time to enjoy their children. Often in these cases, the children were very high functioning (higher functioning than most of the children I'd worked with). I felt like saying "Be thankful your childis much more capable than most of the children I worked with rather than obesesing over what a "miserable" future your child will have if s/he doesn't live completely independently." That I(as somebody with a disability myself who is still working on idependence) had no patience for.

I love reading your blog and following the stories of your twins. I love small children and miss my little cousins who live in Nova Scotia so I enjoy the photos and videos of your girls who are the same age as my younger cousin. You have a very positive outlook on life.

Anonymous said...

I hear you Billie......we live in a munchy crunchy granola type area, and my absolute least favorite younger mommy whine conversation in the universe is the "I didn't get to have a 'natural' birth", or bragging about avoiding a C-section, or acting like having to have a c-section resulting in the birth of a healthy term newborn is a great tragedy. I can't count the number of times I've found myself in the middle of this. It's all I can do to keep from screaming "I would have given anything to have had my emergency c-section result in a healthy baby we could bring home! Put down your organic soy decaf latte, and read about the medical accommodations in Iraq." You have a lot more grace than I do.
sari

Anonymous said...

I think everyone's coming into things with their own pain. I think being aware of your audience is good, but censoring too much is painful, too--- for both people in the relationship.

I know for me, in the midst of 8 consecutive miscarriages, it sometimes helped when people complained about pregnancy(i.e. it wasn't necessarily the end of the rainbow, and I wasn't a pariah), but other times it felt like a punch in the stomach(the info that a six months pregnant friend didn't feel like sex anymore after I've just delivered a dead fetus to the lab in a plastic container).

And then, there was a time I would've looked at your blog, and would've KILLED to be in your situation, with those two gorgeous souls needing your mothering, regardless of tubes and fears and no sleep and pumping and sickness and brain bleeds. Really.

And yet I know that once in your shoes, I would finally understand the at times utterly terrifying landscape you found yourself in.

And I know there are things that might not even occur to you---single moms looking at you with John, or people with abusive parents seeing how amazing your parents are.

As you said, I think the thing to do is be kind, and choose your audience. And vent with people who understand, like here, because god knows we ALL need it. I think usually when people are gentle and thoughtful, no matter how awkward about it, things are OK in the end. And I think sometimes finding a way to gently let people know something hurts you is also good. Sometimes they just genuinely don't know.

At the same time we should never assume someone's fears aren't valid. I know thirty two weekers who've died.

BUT good LORD, yesterday? A stranger? After hearing my daughter was a 24 weeker? Announced she totally understood. Because her daughter had been born at THIRTY NINE WEEKS. My husband and I just shook our heads. Her ignorance was almost embarrassing.

Anonymous said...

Hi Billie,
I have not posted in a real long time but I come and read all of the time. I read your blog today and felt that this time I could relate, but in a different way. I usually do not tell people about my situation but what the heck!!! My husband and I have tried to have a baby for 3 years without luck and it has been a devastating road. When I hear others complain about their children and when I see parents get annoyed with their children I think to myself, I wish I could be you, I wish I could get pregnant and have a child and experience all of that. So, your blog was very touching to me because even though I cannot imagine what it is like to have a child, I do understand what you mean when others complain or take for granted what they have.
I feel that you truly understand the blessings that you have in your children and I admire you for that. You always seem to find the positive in every situation that you are faced with. You are wonderful parents and I really mean that!!
Thank you for your blog and keep writing, I really enjoy them.
Take care, Terri Fair (Sculthorpe)

Anonymous said...

You always say what I'm feeling. I was just at dinner last night with someone who just had a baby about a month ago and someone who has just found out she is pregnant. They were discussing pregnancy and the one who just had the baby said that there was no way she would breast feed and in my head I thought "at least you had a choice". I wanted to but couldn't because my son was so small and all I could do was pump my milk, which was painful, but all I could do. I know others could not even do that. So many of us wish we had the choice. Then she said she hated being pregnant, and I thought, "at least you got your nine months and had to be induced". So many of us had to deal with the grief of not getting our nine months, others never even got their child. I know what you mean about people saying things in the right way and being sensitive. I have several friends that are pregnant right now and I want to be so badly, but I have to wait and time it right because I will be on bedrest beginning at 20 weeks regardless of how things are going. Some people just don't understand how hard it is to know that and be told how they didn't really plan the pregnancy. I wish I didn't have to plan my future pregnancy. Thanks for saying the things that so many of us feel no matter what the situation is...it can be worse and I am blessed with what I have been given.
Lina - Mom of a 25 weeker

Amanda said...

My friend has 25.5 week micro preemies, that is how I found your blog- they are now 6 months old and are doing well so far- your blog is VERY interesting and informative- and with 42 comments it seems as though other people think so too- I don't know you, but I will pray for your girls and your family- This particular blog helps me to realize not to complain over the little things my 2 year old does, because I cant imagine how much you have been through... thanks for allowing me to read your story-

Angela said...

Billie -- I posted a link and quoted text of your post on my blog. You literally took words and thoughts I've had FOREVER floating around my mind. Thank you for taking the time and energy to help me work out some things I have always wanted to say. I truly appreciate you and I am so glad to "know" you.

PS -- ironic that this post came right after one of "those" conversations. It blew my mind what this person was saying TO ME?!? Not that it's all bad -- but seriously you would have fallen over to hear the words.

Thanks again Chica!!

Anonymous said...

I too can relate as the mother of a 29 weeker with CP. I seriously want to cry sometimes listening to my friends and family complain about their children and full term pregnancies. My cousin is the worst. She complains to me constantly how her 13 month old is always following her everywhere and she is always tripping over her and she is in to everything. Meanwhile my almost 2.5 year old isn’t crawling or even sitting and my cousin knows this. I would give anything for my child to follow me around and get into everything. Also after her child was born she kept telling me how perfect her baby was despite that she had drank occasionally through out her pregnancy. Of course I did everything right in my pregnancy and things turned out much worse than it did for her. Life isn’t fair. It sometimes makes you want to withdraw into your own world and not talk to anyone.
Thanks for a great post!

The Walsh's said...

Love this. But I do agree with some Moms that in a very broad preemie blog forum, it's difficult to choose an audience. I'm just glad that we can all accept each other regardless and keep in mind the wonderful things you've pointed out here.

Thanks for the recent comment on Lincoln's blog. And I hate to fuel the fire, but I had just rolled outta bed for the picture, so I had done NOTHING to my hair. I know - I thank my Mom for the ability to do this. So no tips. Except, pick a Mom with good hair. Ehhh - That's not very good advice, is it?

Korrina said...

Billie,
I couldn't have said it better. I know exactly where you are coming from. I find it so hard to have sympathy for friends whose kids are "sick" and I would give anything to have gotten so pregnant with my twins to have swollen ankles and kidney stones etc. I have zero sympathy for pregnant whiners, they don't know how good they've got it. It's like I said to my girlfriend when she was 32+ weeks pregnant with her IVF twins, somplaining of back pain etc. " I would give anything to be in pain and on bed rest instead of sitting in front of a NICU isolette every day, don't complain, you are lucky". Yes everyone has their own troubles but they need to put them into prespective too. Sometimes people need to be reminded of how lucky they are, us included.

The personality differences are amazing. I see them in my girls too. It's amazing how early those unique. different personalities are evident.

Mir said...

Billie,

I agree, it's a good post, but I also whole-heartedly agree with the anonymous commenter who said every person's journey is their own.

My children are both healthy, FT babies, but that doesn't make our trip to the ER last month at midnight for appendicitis any less harrowing. And even though we have been blessed with two children, our third (still baking), was given a 20 percent chance of making it to 24 weeks until Tuesday. Since I'm in the clear, does that mean that I didn't feel the agony and fear of the last 11 weeks of bed rest with a high risk of miscarriage any less than a woman who doesn't receive the wonderful news we have this week?

And, yes, my son eats, but he can't digest meat. So, he's a vegetarian. Should my concerns over why he can't eat meat not be valid to a mom whose children eat very little? How about if his genetic tests come back in a few weeks stating that he has one of the rare IEMs, and his allergy is fatal? Does that justify my worrying and now "allow" me to be a person who can complain?

Everyone's journey is different, very different. And we all need sounding boards and support. That said, if a person expects someone to offer these things to them, they should, out of respect, friendship, and love, be willing to offer them in return when they need it.

No one has the right to always be the taxing friend who requires so much empathy and support that they drive away the people around them, and I'm not talking about that group of people.

But your average person needs support for their average problems just as the parents of micropreemies do. Maybe not as much of it, but we do need it.

Anonymous said...

Hi Billie,

Like others I really relate to what you have posted and think you have worded it beautifully, I have thought about your blog and re-read your words many times. Just the other night my friend was complaining about her nephew who is not yet one being into everything and how you had to watch him every minute of the day. As a mother of a child with CP, who is totally immobile, I could hardly contain my frustration. I would give anything to see her be able to move herself around the room in any way shape or form! I appreciate there are many children so much worse off than Chloe, and I am so proud of her for such ridiculous tiny things that other parents take for granted, like sitting up straight in the shopping trolley, managing to feed herself a stick of cheese, pushing up on her arms just that tiny bit. I truly think that unless you have a special needs child you just have no idea of both how draining and rewarding it can be.
I check your blog every day and I love the updates, I take a lot of inspiration from Holland and Eden and they have provided me with a lot of comfort in the last few months.
Claire from London.

Kim said...

I agree with a lot of what you said and with a lot of what Mir said. I remember, a few weeks ago, I happened upon a website that listed gestational ages and statistics. So, for instance, it said that micropreemies have an 80% chance (I am totally making up these numbers right now) of NEC, 30+ weekers only have 5% chance. Micropreemies have a 90% chance of BPD, 30+ weekers only have a 4% chance. That was fine, and obviously research based. But then it went on to say that micropreemie parents experience severe stress for approximately 65 days, whereas parents of 30+ weekers should only experience mild stress for 2-3 days. What?! I understand that, as a mom of 32 weekers, what my kids and I went through in the NICU is nothing compared to what you and H&E went through, but what hubris for someone to think that they can tell someone else what they should feel and for how long.

So when Jackson was diagnosed with his motor-planning issue, no, that doesn't at all compare to Holland and Eden's CP diagnoses, but it was still a big deal to me. It still made me worry about his future and what this means for him to have a brain-limb disconnect. Maybe the difference between me and the anorexic at Weight Watchers is that I would never complain to you about a gross motor issue that one of my kids' was having (except perhaps, to use it as an example in your blog's comments section :) ). Maybe it's just a sensitivity issue.

I think everyone has their own pains and what might seem like small potatoes to some, are really a huge deal to others. And no one can quantify someone else's pain. As I have been learning in nursing school, "Pain is whatever the patient says it is," so if someone has a procedure done that I have also had done and I know that, for me, it was easy, but they report having a 10 out of 10 pain response, I have to believe them because they might just experience pain differently from me. I think the same holds true for emotional stuff, too.

Billie said...

You guys are all so awesome, and I have really loved reading the comments on this post. It's so interesting to me to consider the issue from many different perspectives.

I think Kim's example of the pain rating scale is such a good one, and I think it definitely holds true with emotional stuff as well. In reading the anonymous comment, and Mir and Kim's comments, I really think they are saying the same thing as me, just from a different perspective.

I am aware that my experience has colored my ability understand where others are coming from in some circumstances, in the same way that ANYONE's would, including if your experience is having a full-term healthy child. My point was exactly what you are saying...that everyone has their own perception of their struggles, and they are are very real and valid for them. It is up to me to learn to choose my audience, and to be compassionate and supportive to people no matter what their "issues" are. I need to try understand their perspectives in the same way that I hope they will try to understand mine.

And, can I say it again? You guys ROCK!

Mom Of Thomas said...

Exactly!! I get so annoyed when, for example, a mom of a typical child complains because their toddler got into their purse and tossed the keys in the toilet. Do you know what I would give if my guy could toss my keys in the toilet?!? It's hard to draw the line of what you can hear without falling apart and what you just can't tolerate listening about.

((HUGS)) from one cp mom to another.

Anonymous said...

You are so right--it is definately a matter of perspective. My 7 year old son is non-verbal, legally blind and has CP. It might sound bad, but he does understand a lot, knows a couple of signs and can make sounds that mean certain things. He can also see about 3 feet ahead. His CP is the right-sided hemiplegia type so he can walk with a limp (figured it out when he was 5).

I am reminded just how much to be thankful for and not take anything for granted every time I visit his school.--- He goes to a school for the blind--- The majority of the other kids there are lower functioning than him. Over half the kids are in wheelchairs (which in itself is not a big issue), but they are also pretty much unresponsive, and/or have seizures, on feeding tubes, etc. then there is the deaf/blind class.
On the other end of the "perspective issue"; his twin sister who was supposed to be "fine" and has learning disabilities and other issues has hit us harder. I guess it all depends on how much you expect from the start....

Take care & keep up the great posts.
Carla

Mir said...

Billie,

I also want to add that I applaud you, REALLY applaud you for the uplifting way you share your lives with us. So often, you come across people who are only able to see, or at least share, the negative parts, to complain about why life is rough, and it leaves me wondering about the good things their child does, and the positive aspects of their lives together.

I'm certainly not singling out any set group -- people are guilty of this across the board. It makes me want to take them by their virtual shoulders and shake them, yelling "don't you realize this is the ONLY life you get!? That this is the ONLY time your child will be this age?! Make the best out of it!!!"

And I have to say you're a shining example of releasing stress and still showing how much you appreciate your life and the lives of those great little girls.

Anonymous said...

I enjoyed reading your post, Billie. It's been a very long time since I visited and I was curious to see just how much the girls have grown. My, what a surprise! They are getting to look so grown up.
Bless you and yours.
Patti Roberts

Jennifer said...

Sadly, I have lost friends due to this topic. They have "normal children" and I have a son that has Cerebral Palsy. They kept saying that my son was just like their children and that we live the exact same life. I respected them when they would complain about their issues in life that I would be grateful to have and when I complained or cried about mine then they told me I was ungrateful. I realized that no matter how hard I try or try to explain my life they would never understand. They only wanted to see their side of the story and not mine. This is always a touchy topic that I face every day. Thank you for blogging it because it is good to hear that there is others who feel the same way I do.

Anonymous said...

Well said. I think we are all guilty of complaining and getting burned out from time to time, but it certainly still each of our responsibilities to remember our audiance. Absolutely.

To those who complain to much, perhaps say, "I'll trade ya!" and watch them humble right down.

There is always someone who has it better than us, and always someone who has it worse than us. Being kind and sesitive at all times, really isn't that hard of a thing to ask.

:)

Mare said...

Billie,
Your girls are beautiful! I have a question.....my son is 9 mos old and is at risk for CP. He had a traumatic birth and a near sids one week later, causing neurological problems, inculding seizures. Have your drs. indicated that your girls are at risk for other issues, such as Autism or ADHD? It looks like they are past the age for Autism, but was that ever discussed? I asked my Neurologist and she said he is at risk for any other Neurological disorder, more specifically ADHD than Autism, yet it still freaks me out. Some of my other doctors don't seem to think it is an issue. Just picking your brain. You seem to have it all together. I read your blog last night and feel much better about my unforseen situation....

Thanks! Mare!

Allison said...

Holy schmoly you got a lot of response on that one! You are right on girlfriend! If everyone could think of things from this perspective daily, we would all be better people.

Kim said...

I think that, from now on, I am just going to wait for Mir to post her comments so that I can then just agree with her and not have to write as much :)

You are an amazingly strong and graceful woman and I have always admired you. I hope my last comment didn't make it seem otherwise. 95% of the time, you are upbeat and positive and loving life and your girls. That's more than most people who don't have half the struggles that you do. Like Mir, I applaud you for that.

Kim said...

Okay, one more thing...

I was thinking of you the other day when I was picking J&A up from daycare because I was watching one of their little daycare friends and I am pretty sure he has CP. He is almost two and not walking, though he is making progress. I just look at the way he moves his legs and know that he is likely looking at a CP diagnosis. He also has some pretty severe oral sensitivities and doesn't speak yet.

Anyway, why did this make me think of you? Because he is in daycare five days a week! I remember you saying in the past that you can't put H&E in daycare because no daycare would take them based on their specific needs, but there's hope! Our daycare is awesome and they do a really great job with Lukas (who was a 34 weeker, believe it or not). He also has his EI and private therapists come to daycare and work with him. Maybe you should move here :)

anne said...

Thank you for writing this, Billie. I have typically developing twins who were born full-term, and an-almost-four-year-old who has Down syndrome.

My oldest son has endured many health complications, including open-heart surgery and leukemia. But I love him to the moon and back, and would never wish for a life without him. He is, undoubtedly, my greatest accomplishment.

But I agree with all that you said, and I appreciate that you took the time to write this.

Anne
www.archiesroom.com

Chickenpig said...

You are absolutely right about this post. It took my husband and I about 5+ years to get pregnant with our twins. I never thought that it would be "wrong" of me to complain about my pregnancy in general, but when talking with other infertile ppl on the internet, I kept that stuff to myself. I had the luck of going full term with my twins without incident, but I NEVER took this for granted. Ppl would say to me "I bet you're ready" or "Don't you feel uncomfortable?" and all I could say was "It's 100% better than the alternative". It's better than never being able to get pregnant, or to miscarry, or to lose one of the twins, or to have preemies. I wish that every mother of twins, or singletons for that matter, could get to be as 'uncomfortable' as I was, and everyone struggling with infertility, for that matter.

Lisa said...

I found your blog through Tertia -- I really enjoyed this post. I think everyone needs a little perspective.

daisysmum said...

Agree. My daughter was born with Leukemia, and is now two years old. Every moment of accomplishment is so amazing that we have never really noticed if those accomplisments were approrpiate for her age or

The fact she could walk after all the chemo and BM transplant left us in awe.
I have had to give myself a pep talk when feeling resentful of parents complaining about things that to *me* would be great problems (picky eater is better than tube-fed), everyone's feelings and expriences are valid - and we are better friends to remember that.

Anonymous said...

Thank you so much. Found this through Tertia. I have surviving quads who were born at 26 weeks (1.11, 13.5 oz, 1.13, 12.5 oz) my son James died at 5 days old.

My 3 remaining children were all disabled to differing degrees. Anna has down syndrome (obviously not related to the preemie status) John (baby c) is legally blind but sees okay and is delayed. Emma was very small (13.5 oz) spent 6 mos in the NICU and at 2 was diagnosed with pulmonary hypertension. She passed away unexpectedly in January. She never walked.

Anna and John just turned 4 in September.

I find it so hard to read about twin/triplet moms saying how hard it is with the 2 or 3 that are typically developing. I mean, I can't take my eyes off Anna, she has no safetly awareness. You can never just sit and watch them play outside. Emma couldn't walk, was on lifesustaining medicines that had to be kept on ice packs that ran 24 hrs/day through a broviac line in her chest. John is okay, just a little behind and sometimes has to orient himself with his vision.

Just thanks for the perspective post. You hit the nail on the head. I feel that way so much and am just relieved to find someone else who understands.

Jane
www.snanimals.com

Anonymous said...

Hi Billie, I do understand where you are coming from, people can be so unaware of what and to whom they say things to.. My twins were born at 32 weeks, and to most micro preemie moms that is nothing. But my daughter had a grade 3 brain bleed and both my kids had sepsis, and my son was on a ventilator ect. ect. I guess what I am trying to say is we really don t know what someone else has been through until we have walked in their shoes .. I trhink when we have situations that are worse than others we tend to say please!! and roll our eyes when others complain or are nervous or anxious.. Be kind because we never know what others have going on or the pain that they feel.. All worries are valid, no matter how insignifigant.. That said I think you are an amazing person and mother and I applaud you and your husband on raising such amazing girls!!

liz said...

Found your blog from Tertia's and I am floored by how well you have described what I've been feeling lately.

It is from an entirely different point of view -- I am a single mom who is sick of hearing my non-single mom friends talk about how hard their lives are (that makes it sound petty ~ it's more than that, really). I, too, wrote a post last week entitled Perspective but yours is much more well writen than mine. Thanks for your insight.

~liz

Iron-Man said...

I think in general people are not very courteous or thoughtful and they have very little consideration for others.

When you meet with nice people, treasure them as they are special!!

Anonymous said...

Dear Billie,
I found your blog through Tertia. I am so glad I read it today as I am going through a tough time with my triplets (all girls) they have just turned 3 and are a bit hectic. Triplet 2 needs some OT as her fine motor skills are slightly behind the other two and she has slight sensory issues - but after reading your blog I realize that I have three healthy girls who have NOTHING to worry about and that I am forever gratefull for this. Thank you for a wonderfully written piece. Triplest mom from Cape Town, South Africa.

Kimblahg said...

Actually, I don't mind when women complain about being in the last months of their pregnancy because I look at it like one blessing of having preemies, "Well, I never had to experience the misery of the last trimester". I would have gladly gone through the last two and three months if it meant healthier kids and less NICU time but I can't change what happened so I just brag that I never had to deal with being 9 mos pregnant in the summer.

Kimblahg said...

In addition to my previous comment, I have to admit that I get quite annoyed with some bloggers out there who get incredibly overdramatic about their kid needing a speech evaluation or some very minor issue. As you said, every parent wrestles with worry but when I read those things, I only think, "If only that is all I had to worry about".
/Momma to former 25 1/2 week preemie triplets and 1 29 week preemie singleton.

Anonymous said...

I will add one thing, though....

Just because your child is "normal" (whatever that means) does not mean that child rearing is not sometimes challenging and exhausting. We lost our little preemie girls, and of course were overjoyed with a healthy term son, but you know, even though we were grateful, we were still sleep deprived for 2 years, and after he learned to walk, spending his every waking minute wondering what he was going to destroy next, or if he would once again figure out a way past childproofing to find a way to hurt himself, etc. (like trying to pry the safety cover off the electric outlet with a metal fork!)well, although we fully understood "how good we had it", you know, I was still just very, very tired, not to mention still kind of depressed about losing his sisters. The big difference though, was that there was an end - in sight, he grew out of it, but at the time it was still hard. And I didn't feel like I had a "right" to complain. sari

Kelly said...

Wow, I just found you today through Danielle, and this post couldn't have been more appropriate for my mood. I think it gets easier with time, as you get more comfortable with the child you have... at least that has been the case for me. I say it in my head, "you're complaining about this?" and sometimes out loud if the mood seems right. I realize as a special needs mom, I have the ability to downright humble any person with their specific complaints and worries, by reminding them that it could always be worse and that someone else probably does have it worse. That is quite a power to have and I hope I use it wisely.

That said, sometimes I hate hearing this but I think it is very true; God only give us what we can handle. And maybe the parents who complain about delayed walking in their 9 month old are really just dealing with all they can handle because they probably couldn't deal with the things we see on a daily basis. That doesn't make us better, or make us saints. I think I just hope there was a reason behind the divine intervention that game me my Jenelle. ;)

Nice to meet you and your beautiful girls!

Amy said...

I nodded my head the whole time I was reading this entry. I try to be very cognizant of my audience, especially in real life. Even when I moan a little on my blog or share some nagging insecurities about my son's development, I always feel like someone is out there reading thinking "STFU". I KNOW I am blessed and have been incredibly lucky, so I try not to complain too much. However, like you said, you can't really "know" your audience on your blog, so you could definitely unintentionally offend someone. It's a fine line...