What was running through my head...
Funny baby story? Were there any funny moments? She had to do something cute and funny in between her screaming every waking moment, therapy 5 days a week, all of the medical tests and doc appointments. Nope. Nothing at that age.
Toddler years... there has to be something there in between the 5 hours a day of leg stretches to avoid surgery, therapy, screaming from sensory overload, choking on food. Nope. Nothing there.
3 years old... has to be something I can remember from then. Nope. Oh wait... I know what I can tell her.
Well, Miss Paige, I can definitely think of a time when you made me laugh.
One day I was on the phone with a friend. I was sitting on the couch and you were sitting on a little chair in front me, watching television.
After I got off of the phone I asked you if you wanted some lunch. When you turned around I was shocked to see purple marker all over your face! I asked you, "Paige did you color on your face?". With the most serious look on your face you said, "no". Since it was just you and I in the house and since you still had the open marker in your hand, I knew who colored on your face. I picked you up and took you into the bathroom so you could see your face in the mirror. As we were walking into the bathroom I asked you again if you colored on your face and you again told me "no". When I turned on the light and you saw your face you looked at me and then looked back in the mirror and said, "Oh shit!"
(we are still wondering where she learned that word)
Over the years Paige has asked hubby and I to tell her a funny baby story, more times than I can count. We have a few stories that we tell her, but there aren't many. I'm sure funny and cute things did happen, we just can't remember them. Living with post traumatic stress and the rapid pace following the discharge from the NICU, I guess there wasn't any room in our brains for funny memories. I really wish I had started a journal back then.
On a side note... thank you to all who wrote comments and sent emails in response to my last post. I appreciate every ones kind words of understanding and encouragement.
I wish the medical community could live in our world for a week. I wonder how fast they would try to figure out what causes the severe mental health issues that older preemies have if they saw what my daughter (and many other preemies) struggles with every day.
35 comments:
You know, I have a ton of funny stories about my nephew but very few about my own kids. What you wrote is so true. Or when I am asked, “What was the first word I said?” For one son it was “Kitty” which was amazing since we didn’t have one. He was just over a year and we were at a friend’s house. He saw their cat and squealed, “Kitty”. He even pointed, and major feat. Fast forward to age 3, he has about 6 words and none of them are mom or dad. You wonder if the anxiety that some of these kids have is a result of, not only the trauma, but also the inability to communicate. I would imagine that I would have very high anxiety if I couldn’t communicate my needs or if the people around me didn’t understand my communication.
Lori wrote that she is a psychiatrist. I’d love her suggestions how to treat depression naturally, if she knows of any. Since I have no health insurance, professional help is out of the question. Besides with the way HIPAA is structured, pre-existing conditions only count if you sought treatment for them. So, as long as I don’t seek treatment, no future carrier can deny me coverage.
I can’t remember who asked about full term pregnancies, after a preemie birth. I had two. My daughter at 37 weeks weighing 9 pounds. And my second set of twins at 36 weeks 5 days. I count them as full term since they were 6 lbs 2 ozs and 7 lbs 9 ozs. We were running out of room and had a real fear of compressing a cord.
I can't deny I feel a little sad reading this post.
Serena and Edwin are only 2 1/2 months adjusted age and they don't do too much yet, but I can think of a ton of things they've done so far that have made us laugh.
Serena smiles her HUGE toothless grin whenever we put her on the changing table. She has a tendancy to smack her brother in the head when they lay together. Her chin and lip quiver when she is about to cry. She tries to laugh at her mobile.
Edwin is cooing now and we always think his coos sound like he is saying real words, even though we know he's not it still makes us laugh and smile. When he is crying he fades out to a pitiful noise that sounds like an evil laugh. He smiles at his dad when he speaks Spanish to him and we laugh at that too.
We laugh when they smell like poopy diapers. We laugh when they pass gass. We laugh when they're hungry so they try and lick and suck on everything and make this smacking noise. We laugh when they coo at their toys and at us.
I know you suffering with PTSD and Paige is older now so it might be hard to think of the "good times" when she was a baby. I guess I have the benefit of being in the baby time now.
But even though the NICU was awful and there was so much stress, I can still remember the good times, the times that hope was restored, refueling our hopes that they would make it home. The first time their eyes opened after being fused shut for weeks was amazing. The first time they bottle fed and then burped...we laughed. Breastfeeding for the first time was magic.
There were plenty of lows...trust me. That's to be expected when you deliver too early. We know there could be a lot of really bad news as they get older. But I know we are never going to focus just on the negative because life would be unbearable that way. I guess I've prepared for it because I know it's a reality, but death stood at our doorstep so many times, but we were so lucky to have both our children survive and come home with us. Everytime I am sad about their future I just become so thankful that they survived and we are blessed to raise them in a loving and supportive home.
I could focus on the fact that they suffered for so long in a hospital, that our son almost died in front of our eyes too many times to count, that we don't know how their vision or hearing will be, that our son sometimes pukes up his meal (getting so much better now thankfully), that they are still too small for even their adjusted age, that we will have a whole lot of therapy, that we don't kow if they will ever accomplish things I used to take for granted. These things are a reality for our children born at 23 weeks, but these things don't define them.
I just finished creating a video collage of them from birth until now. We took A LOT of pictures and I journaled from the start. Maybe this will help me never to forget even the little things that bring so much joy to our lives.
I know you hurt deeply for Paige and I don't blame you. I just hope there is a part of you that can look past the pain and remember the little things from her baby years. Even if it is just those little things.
Like 23 weeker twins' Mummy - I have lots of funny memories and stories about my twin boys' lives so far...
Like many parents of extremely premature babies we struggled through months of NICU and the endless fear that the boys would never come home. But even during those dark days we had cause to laugh...
One memory springs to mind. I came in early to NICU one morning and greeted the nurse looking after Mitchell (at this stage the boys had their own nurses). After a while I went for a coffee. When I came back I noticed she wasn't wearing her uniform but was in theatre scrubs instead. Of course I must have had a worried look on my face - imagining Mitch was heading to surgery again. The nurse reassured me that he was fine, but that as she was changing his sheets his ileostomy bag popped off and he "shot" poo all down the front of her uniform (hence the change of clothes). Later on I went to lunch and when I came back she was wearing no shoes! Turns out Mitch had managed (with his tiny penis) to urinate out the door of the humidicrib and into her shoe! We both just cracked up - if he could cause that much mischief when he was so small - who knew what he may do in the future...
And now that they are 2 3/4 years old - they are still very small, still have coordination problems and we are dealing with verbal dyspraxia and sight problems with Mitch...BUT not a week goes by where I don't have some funny story about the two of them. I count myself as one very lucky Mumma. And my heart aches for those parents who don't have this joy.
Sending a big hug to you Stacy,
Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old
One story about Kate I still find hilarious happened when she was 4. She drew something which looked like a girl holding a picture of a girl. So, I ask her who the girls are and she says, "They're both me, because it's ALL about ME." Thank goodness that stage didn't last long :)
Twinsx2:
1. The absolute best natural treatment for depression bar none is exercise.
2. Fish oil is reputed to help mood. You can get the gel caps in the vitamin section. Sometimes people complain of burping after taking them and getting a bad fish taste, but if you freeze the caps before you take them that should help.
3. If you are spiritual, studies have found that prayer can have a significant effect on mood.
4. Meditation or yoga is also helpful for some people.
Hope these suggestions are helpful.
Stacy:
So glad you're back, but am sorry things haven't been going well for you and Paige.
Take care,
Lori
Stacy (and all), I think you should engineer a funny story right now, TODAY.
Sing "Do your ears hang low" to Paige and T, pantomiming all the while. Photograph P's and T's response, or record the song and subsequent laughter/dialog. (You need to have some kind of creatively-fashioned ears, of course!! Props, girl, props!!)
Make a deliberate mistake, and ask P to help you rectify it. For example, put yours, hers or T's shoes on the wrong feet. Better yet, have their dad come out with clothing on backwards, or shoes on the wrong feet. Capture the reaction (and tell us about it).
Serve desert before dinner, and see what P says. The look on her face?
Mark YOUR face with purple marker, the way P did at age 4. See what she says/does when she sees you.
Let us know.
Hide something (such as all the food in the pantry or in the fridge) and when P wants a snack, act as if you don't know what happened See what she does/says.
Gather all the stuffed animals around the table for breakfast, each with a plate, knife, spoon, bowl. Put bibs on all of them. Make P the waitress, telling her it is her job to serve breakfast this a.m. YOU be their voices, demanding this and that exotic breakfast dish.
Chris and Vic
But the fact that we have to “engineer” the story underscores the point. My nephew, who is NT, naturally came up with these. Like the time we were standing in line to buy picture frames and he was picking his nose. I told him to stop and he said, very loudly, “but I have to get the boogers out!” Or when we asked him to cooperate and pick up his room, at first he complied and ran off. We had told him that everyone needs to cooperate. Then he came back and said, ‘No, YOU cooperate!” He was about 3 or 4 then. Or when he was running around nude and we exclaimed, “Indecent Exposure!” He ran to his dad and said, “Decent posure, dad!” It goes on and on.
Of course, my preemies, 25 weekers, weren’t talking at age 3. One never will have the ability to ask me for a funny story. My boys sat up on time, walked on time (they were my earliest walkers) and crawled on time. According to my notes, my essentially non-verbal boy said, “Brat” at age 4 ½. He repeated it at school. He was fighting me on changing his diaper and I laughing asked him if he was being a “brat”. He echoed it. To my knowledge he hasn’t done it since.
My other preemie at about age 8, when we lost electricity due to a storm, said, “hey, did you forget to pay the electric bill?” That was probably the first spontaneously funny thing he said. I’m not sure if it was video speak. Once he said, “Hey, dead girl off the table.” You have to have seen Shrek to get that one. He used to be a walking advertisement for Dish Network. “Don’t take your dish with you, call Dish mover at 1-800- (I don’t know the number by heart like he does!)
At Christmas time I had to rehearse going to see Santa. I was doing social stories although I didn’t know it had a name at the time! He wanted a robe for Christmas. That’s it, a robe. He was in first grade. Dh and I could just see the scene after Christmas Break. “What did you get for Christmas?” Answer, “a Robe.” (As an aside, we often call him Hef) So, we researched the hot toy for Christmas. (do NT parents have to do this???) It was a Gameboy Advance. We sold him on getting one. He didn’t play with it for several more years but at least when asked what he got for Christmas, he answered, “A Gameboy and a robe.” Now I research to cool clothes. He has to be told not to wear the hoods on his hoodies. ( What are they there for then?)
It’s this little crap that weighs you down. Having someone say at the zoo, when they notice your 6 year old is still is diapers, “Well, all I know is that child should be potty trained!” Fine, give it a try, knock yourself out. Train a non-verbal, severely mentally impaired, profoundly autistic, legally blind with mild CP child. I double dare you! My goal was age 10 and we beat it by a year! Some of the kids in his class are not trained and will probably be in diapers forever. Rehearsing going to Santa. Telling people not to worry about a gift for your one child since he doesn’t play with toys anyway. I’ve been getting clothes as gifts for Alex since about age 4. Oh, and don’t even get me going on putting a less-than-3-year old on the bus!!! I was in tears on the first day of kindergarten, not because of starting school; Ian had been going since he came home from the hospital, but because he was going into general education kindergarten! NT parents have no idea how huge that was for a 25 weeker born weighing 1 lb 6 oz, having “served” 100 days in the NNICU. Alex will never get that privilege.
Good post, PE - I remember joining . .and then rapidly "quitting" a local mothers of twins club. One of the things we were required to do for their newsletter, was to write our stories - well, it was the typical - how big they were, boys or girls, etc., one of the last things was "what was the funniest thing your twins have done" - I too, was stumped. Funny just didn't seem to be a part of our life after having spent 5 months in the NICU and ending up with severe, multiple disabilities. And the things that others with multiples were concerned about were just well, stupid in comparison. It wasn't a support system appropriate to our situation in any way. .
As far as your statement about how it would be nice for med personnel to live in our shoes for a week - yes, they should, everyone that wants to be a NICU doc or nurse should be required beforehand to do that. .
I am stepping out on a limb here (so I hope it doesn't crash down around me!), but reading many of the stories I wonder if there isn't anything happy that you can recall from your children's childhoods? I sense a great deal of anger towards the medical fraternity - which I can empathise with, but don't truly understand. I understand that I am not walking in your shoes, but doesn't life ever give you cause to smile?
Please understand - I am not criticising Twins X 2, PE & Terri W/2, but I don't understand how you even manage to get out of bed each day if the lives of your children are so lacking in humour.
A good friend of mine has faced an ongoing battle with her son with Downs Syndrome - who wasn't diagnosed until he was 3 days old. He has faced life-threatening surgeries, multiple illnesses and has profound behvioural problems. In short he is a never-ending source of worry and concern for his dear Mum. BUT she can still share funny stories - like the time she caught him brushing his pubic hair - because "its hair mum and you brush hair" or the time he started swimming in the ocean, but due to his limited understanding just kept swimming out, until lifeguards rescued him. Each day is a series of battles for her - but the thing that seems to keep her going is the joyful, funny moments.
Do you have any of these with your children...
Just trying to understand,
Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old
I kinda agree Lisa. I am also puzzled by the suggestion that NICU nurses and Drs should have to "walk in our shoes for a week." What would be the purpose of that? There job is to try and save the lives of neonates. They, like no one else, can't truly predict how a child will fare once they are discharged. They hear and see all outcomes. The ones I have dealt with understand that sometimes there are terrible diagnoses later on, and sometimes there are miracle stories. They are just trying to do there job, which is saving the babies most parents desperately want them to try and save. And if you objected to your child's life being saved, then that's for the ethics committee to decide most times, not normally for the NICU.
I understand venting and feeling overwhelmed at times, but constantly going on and on about how hard and unfair ones life is cannot be productive. I too am not trying to condemn anyone here, it just sometimes seems a little drastic how there seems to be so little good in what you describe as you and your children's lives. That just makes me very sad.
Although I have used humor to cope with many adversities in life, I personally find it disappears when I have had to live in "high alert" mode over periods of time.
I have a "normal", term son who is a climber/escape artist etc. This kiddo can stack items on chairs to climb up and disable the motion sensor alarms we have installed to let us know if he runs outside while we're trying to go to the bathroom, for example. He was prying the safety covers off the electrical outlets with a fork at 15 months. Scaled the top of the refrig. at age 3 (last summer) and drank children's benadryl and had to go to the emergency room. He frequently doesn't sleep much, either. I could go on. There have been times where all my energy has gone into making him safe for days on end, the house is in shambles, at which point I have no sense of humor left either.
I honestly think the type of disability you end up with (perhaps more than the type of person you are) plays a role in this, especially if the issues mean you are not getting any sleep. Someone raising a child with little support who cries a lot, constantly engages in dangerous behavior, does not respond to limit setting, and doesn't sleep for more than a couple of hours at a time as their baseline is going to have less of a sense of humor than someone whose child simply has a fair amount of medical needs. "Going on about how hard it is" may be productive if it reels in helpful hints. No one is going to give you potentially helpful advice about how to deal with problems or support if you don't state what they are.
Stacy, I am not raising my preemies, but two other children, one quite challenging, and I can't say enough about positive same gender role models. I have had tons of success getting my kids to conform to socially appropriate behavior by finding a kid some years older willing to spend time with my child and demonstrate, over and over what socially appropriate behavior "looks like". The attention is great for self esteem, too. I know it won't help fix psychiatric problems, but could still be helpful. I really hope you are able to find something (or a combination of somethings) that help Paige through her current rough spot.
sce
I have just come back from visiting my brother, his wife, and their two NT sons -- ages 2 1/2 and 4 months.
It is *such* a different set of experience from those we have as parents of preemies!
My brother and his wife already have so many funny stories about their children, stories totally unclouded by the problems that haunt so many of our children's babyhoods and lives.
Nevertheless, I *do* have a few funny "baby" stories about Ed, if only because, in most important ways, he is, and always has been, our "baby." In fact he is far less capable and "with it" at age 31 years than his 2 1/2 year old cousin.
Your story about Paige and her use of "precocious" language, brought one of our funny stories about Ed to mind.
Ed was probably 8 or 9 at the time, chronologically.
DH, who drives Ed to his day school during the week, is normally a *very* proper person. However, while serving in the army, DH picked up, or rather developed creative elaborations on, a salty repertoire of profanity.
DH is also a former hockey player with a hair-trigger temper, and the frustrations of rush hour traffic really bring it out.
After one particularly brutal commute, DH dropped Ed off at school. When he returned at the end of the day, Ed's teacher --an also *very* proper elderly European woman -- walked Ed out to the car and said to DH: "Edward seemed upset this morning. He was particularly worried about something having to do with 'mother foxes'!"
Tiredness, stress, anger, lack of resources, lack of understanding, no one listening, people getting bored of listening, no one baby sitting, washing the bed linen and clothes again and again, wiping floors, cleaning up carpets,no money, no job, no ability to get a job becasue of the caring commitments, looking after other members of your family, feeding issues, resourcing, education,visits to the hospital, clinics, therapies.
All these things and more get in the way of humour.And that is just in year one - after 10 years and more, this list goes on for pages and I just stopped finding it funny.
Sorry if this comes over as arsy,but whilst my son makes me laugh and smile, my situation and his most certainly do not.
Dear long time listener,
No one is suggesting (I think) that the situation of dealing with a child with any health issues is humourous or makes you smile. I am just saddened that parents have mentioned that they have no humourous/ funny stories about their children. My boys were 15 weeks early and suffered numerous medical complications and face who knows what in the future, but they still bring me great joy and make me laugh. BUT I suppose that not everyone is so fortunate.
Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old
Hi Lisa
I am with you there as my boy makes me laugh and is a merry young man who on a bad day is so disconnected with the world that keeping him safe is a full time job.
However, I think that the daily Long Haul that becomes the Life Long Haul for some folks can be knackering and that can sometimes be so overwhelming that the happy times can just be slowly erased by the fears and worries about what lies ahead.
Again, I agree - it is sad and that that sadness is pervasive and wearying.
Today my son is back at school and I miss him like crazy and as I type this I have been wondering why I am SO bone tired.It is because I have switched off ( until 3.00) and am not worrying about him.
Hope all is well with you.
Add up all the posts so far, and one gets at the reality of the anxiety, hypervigiliance, depression, PTSD, and chronic grieving.
For those who wonder that there is no sense of humor, lack of warm, fuzzy, funny stories to pull you through, this is the face of depression---that there is no fun, no humor, no relaxation, endless fatigue and staving off danger and disorganization.
I repeat---this is what depression really looks like, minute by minute, day by day. A certain number of preemie parents are dragged down low for years on end.
Conversely, this is how we would look and talk if we could lift ourselves out of this depression and chronic grieving and PTSD:
*persistent presence of a support network (we are working on this with support lists, blogspots, good marriages and friendships);
*chronic positive outlook and expectations (Stacy has tried to set us up to remember funny stories);
*episodic peak experiences ("funny baby stories," as requested by Paige);
*sense of spiritual involvement;
*persistent sense of humor (not yet, not so far);
*tendency to adapt to changing conditions;
*rapid response and recovery of adrenaline system due to repeated challenges;
*increased appetite for physical activity (major remedy here, I believe, as does Helen);
*tendency to identify and communicate feelings (we are good at this, and getting better on the lists and the blogspots);
*repeated episodes of gratitude, generosity and related emotions (this happens on the lists and blogspots as well--thanks to all who make it happen!);
*increased sensitivity (as evidenced in this thread and the thread before on "My Greatest Fear");
*compulsion to contribute to society (and to their understanding of the issues of prematurity).
(This list was given to me by the mother of several kids with disabilities--she cannot remember where she got it, but it is hanging on hers and my wall, above my computer, for many years now--as a reminder/inspiration. And, for me, as GOAL-setting.)
Chris and Vic
Some of the posters don’t understand because they simply haven’t been doing this as long as we have. They are still making lemonade. We come to places like this so we don’t have to wear a happy face all they time. Where we can be honest about our trials, our tribulations and our fears. Places like TPE are one of the few places where we are understood.
My family does not want to hear that I haven’t had a good night sleep in 11 years. They don’t want to hear about how I fear what will happen to my multiply impaired son when I am no longer here.
Hey, a vacation with dh. I had a weekend 8 years ago. Maybe a night out with dh? Good idea but who will watch the kids? The family won’t. They can’t “handle” it. Or it interferes with their multiple bible studies that they attend each week. They love to share the bible verses to “prove” to me that my situation is all my fault since I don’t go to the “right” church, don’t give enough, or don’t have things right with god.
Maybe I could recall more funny things if my children’s toddler years weren’t a succession of doctor’s visits, testing, Early On classes, and alternative medical treatments. Always researching, looking for the best available therapies and education for my children so that they could have the best out comes. And remember, I have what is considered “a good outcome”. One is in a regular education classroom doing regular education work with no accommodations. Both walk. Neither has long-term issues with asthma. While one is legally blind, for being a 25 weeker, he sees quite well. He has some language in that he can tell me when he wants to eat, when he wants a bath and when he wants to go to bed. They came home with no monitors and no meds.
So, to the posters who wonder why we are not manic happy parents on this blog, it because here we can get real. We are not bitter about our children. And there are tons of parents out there like us, who feel guilty for having similar feelings. We want the doctors to understand that they “save” these fetuses, but then they get to walk away.
If you think we are bitter or angry or don’t love our children, then you don’t understand. Here we don’t have to worry about other’s coping mechanisms. Here we can acknowledge that we are imperfect human beings, not “specially blessed by god” to be given the care and custody of these children. We can vent. We can get ideas. I can say anything to Helen and she understands. She’s not going to call the cops or protective services because I vent about a bad day. She knows it’s a vent. And hopefully other parents feel empowered and understand that their feelings are “normal.”
I have a good equation for you:
the severity/number of disabilities
times
the age of the child/children
times
the number of children with issues
equals
the erasing of ones sense of humor and any memories of past humor.
I went to a PTO meeting for the first time at my son's school for the blind over the weekend. The president said this was the most she's ever seen at a meeting--about 15 (in a school of 170). Then everyone introduced themselves, told their childs name and age. Only one parent had an older child--age 17; the rest were ages 3-8. I think the older our children get, the more burnt out WE get and just can't deal with EVERYTHING anymore day after day with no end in sight.
The only "funny" baby story I can remember doesn't directly involve my preemies but their younger full term sister. She was about 8 months old and found one of her brother's dirty diapers that somehow didn't make it into the diaper genie. She got it open and started playing with the contents as if it were clay. Sorry, I guess I have a dirty sense of humor. Oh those were fun years when all three were in diapers--they passed by in such a blur.
Twinsx2:
I totally agree about the little crap weighing you down. If someone even tried to make a rude comment about my 7 year old not being potty trained I'd probably say "here you try" too. I guess most people who see him have enough sense to realize that he has "issues". The description of your twins could have been of mine--our sons sound very similar.
Take care everyone,
Carla
You are exactly right; when I come on here and read about kids who sound just like mine and parents who have the same perspective and feelings; I feel much better. I realize I'm not the only one out there dealing with this and I don't feel bad for feeling the way I do: most days I can't see the light at the end of the tunnel--did someone turn it off?
I think most of us here are realists; not pessimists. Wasn't the internet and the word "blog" invented for people to share their thoughts, feelings, frustrations, etc? This has always been a great outlet for doing just that.
Carla
The comment that appears to be often used is To Beware the Light at the End of the Tunnel - it's a Train...
Surely we all know that feeling?
to Lisa, Mum to Mitch & Harry, and 23wktwins'mommy - I'd like to address the statement:
twinsx2 said...
Some of the posters don’t understand because they simply haven’t been doing this as long as we have. They are still making lemonade.
While this has some truth too it, it doesn't cover us all. My former 26 weeker is now 10, and has a laundry list of dx's that follow his name, as well as many emotional quirks that just don't fit well into any diagnostic catagory. I quit "making lemonade" many years ago, but neither am I willing to spend my life sitting around simply sucking on the lemons! I admit that I probably have fewer "cute toddler" stories from my Preemie than I do from my FT/ND teenager, but much of that could also be attributed to the fact that he was my first born. Humor is the one thing that even now gets me through my days, and humor is the thing that I have passed onto my children. True, my funniest memories are probably different than other families, but they are there. Such as the time when my preemie was 4, and one of the other kids went racing through the house and knocked into the chair that he was propped in having a neb treatment. My son went flying out of the chair, flat on his face because he had/has no protective reflex at all. I run to pick him up, and through his scared little sobs he sputters, "OHHH, J.P. is in so much trouble, he dumped me on my head and now I have brain damage and I won't ever be able to walk!" - This coming out of a child who still couldn't sit independently. He also loves the picture that I snapped of him when he was around 2 1/2 and pitching one of his famous fits - anyone with a spastic child knows exactly how tight they can get when upset - It is a picture of him stretched between two footstools, his head and shoulders on one, and his feet on the other, and my husband had sat his sodacan on his belly in the middle. It is captioned
" 101 Uses for Board Boy, Use number 91."
Do I have my pity party days - you bet. But that is exactly the reason that I make note of all the good times and take so many pictures. Everyday brings new situations and new memories. If I let them, the horrible ones would burn themselves into my mind and the sweet/funny ones would float away. I cannot and willnot let that happen. It's not denial on my part. It is simply life.
Oh, I have a sense of humor but it’s rather twisted and most people don’t appreciate it. What I think is funny, few people do. So, I rarely share those stories! Helen and I, many years ago, swapped some dark stories. Like “invisible fencing”. Have a friend who built a house in an area that didn’t want to allow fences. When her oldest ended up disabled and a runner, she considered invisible fencing. (for about 2 seconds) But we still laugh about it. If you don’t know how it works, Google it but it involves a shock
I frequently laugh about things that happen around here that could get me in trouble with protective services. I have to lock my son in his room at night to keep him from wandering. No matter that I have specialized electronic locks on all the doors, alarms on the windows and fencing and closed circuit cameras around the house and yard. If I want to sleep, he needs to be locked in his room. I called 911 to let them know that I had 4 boys with autism, 3 who wouldn’t respond to their names. I had been encouraged to do this by the fire department. They threw a fit about locking my son in his room at night. Yeah, protective services, 5 to pick up please.
Or, I’d like a shirt that says, “If you’re happy and you know it, flap your hands”. I saw one that said, “Autism rocks…and flaps and spins…” Love it. I’ve sent my son to school on IEP days wearing a shirt that says, “Take me to my least restrictive environment.”
So, yeah, I have sense of humor but it’s a tad twisted and most don’t appreciate it. But I shouldn’t have to keep on smiling just because it offends someone’s coping mechanisms. And for now, I’m off to try Lori’s suggestion and take the 110 pound dog that we are baby sitting for a walk. His name is Cooper, as in Alice Cooper! A kindred soul.
Thanks to all who have commented.
I want to clarify something. My original post was about funny baby stories. Those are the ones that I cannot seem to remember. I'm sure there were more, but there are only a few that I can remember. The stress was just too great.
As Paige got older, her sense of humor came out. She is a funny child actually. Most of her humor lessons came from her Dad so she can be a little rude when joking at times. (love my hubby but he tends to pick on people and think it's funny) She is also very literal so many jokes get lost on her.
She loves to make people laugh. Not a day goes by that she doesn't say, "Make me laugh." or "Mommy, can I make you laugh." She has this silly monkey face that she does that gets me every time.
But, those first few years were incredibly stressful. I wish I could remember more. Our life is stressful now which is why I make it a point to focus on her when she is being funny.
twinsx2 said...
Oh, I have a sense of humor but it’s rather twisted and most people don’t appreciate it.
You can share it here!! I know I'll appreciate it!!
When Paige was a little (around 3) her sensory issues were at their worst. She could not handle going to a store because of the noise, people, smells, etc. She would melt down from the moment we got out of the car to the moment we got back home. So many people would stare at us. I could feel what they were thinking.
So, I made a t-shirt that said, "at least she is not yours".
Lisa wrote: "I sense a great deal of anger towards the medical fraternity - which I can empathise with, but don't truly understand. I understand that I am not walking in your shoes, but doesn't life ever give you cause to smile?"
Hi Lisa,
I am only speaking for myself right now. There are great docs out there. There are some who should have picked a different field too.
What I am passionate about is trying to get the medical community see the other side of prematurity. In many cases (notice I am not saying "all") parents are led to believe that their preemie will catch up by age 2 and that there are no long term issues related to prematurity. This is simply not true. There is research that shows the correlation between early birth and psychological issues? How many parents have been told this?
So many parents really have no where to vent. I don't mind being that place where people can go and share their worries and frustration.
I started this blog so we all can have an open discussion (not one sided) on all aspects of prematurity. My hope is that we all can learn from each other and that the medical community can see what our little ones deal with.
As far as "life giving me cause to smile"... you bet. I do not go around with my head hung low. Life does catch me off guard at times (Paige's current mental health issues included) but I still smile quite often.
twinsx2 wrote: "My family does not want to hear that I haven’t had a good night sleep in 11 years. They don’t want to hear about how I fear what will happen to my multiply impaired son when I am no longer here. "
Oh boy do I understand this!!
Friends don't want to hear it either!
We certainly do have humor here, just not so many funny baby stories.
If it weren't for my husband's and my parents' and my preemie parent friends' dark and somwhat 'twisted' humor, I would have not have made it. Humor is as necessary to me as physical exercise, and breathing.
A friend of mine from Colorado, mother of disabled preemie twins, formed a group of like-minded mothers who would manage to meet in a bar once a week for a moms' night out. Their table was always erupting in gales of laughter -- the kind of
laughter-with-an-edge that only parents who've "been there" really can appreciate.
One night their waiter asked the uproarious group:
"Are you a ladies' soft ball team or something?"
"No," they laughed, "We're mothers of brain damaged children!"
The waiter scurried off, obviously in shock.
I hope that when he recovered his composure, he brought them all doubles.
Helen,
Your "mother foxes" story had me in tears this morning! Thank you!!
Twins x 2
you stated that "Some of the posters don’t understand because they simply haven’t been doing this as long as we have. They are still making lemonade. We come to places like this so we don’t have to wear a happy face all they time".
In my cause that certainly isn't true. If you have misconstrued my posts then I am sorry for expressing myself poorly. In no way do I believe you should have to fake happiness to make others comfortable. But in the same way you like to come to PE to express your feelings - I like to do this too. I do understand the struggles of having a premature baby (my twin boys were 15 weeks early) and I do understand facing the longterm implications of their prematurity (although my boys are less impacted that many). What I am trying to understand is how some posters have apparently none or very few happy memories of their child's life thus far. And this saddens me. BUT that is not your responsibility to worry about my "coping mechanisms" - I just want to understand...
Carla you stated "I think most of us here are realists; not pessimists. Wasn't the internet and the word "blog" invented for people to share their thoughts, feelings, frustrations, etc? "
And in the same way you are sharing your own experiences I am sharing mine. As for being realists or pessimsists - I think the delineation between these two attitudes is fuzzy at best for me. Some days I can see all the wonderful opporuntities that the world holds and other days everything sucks...
Chris & Vic you said "For those who wonder that there is no sense of humor, lack of warm, fuzzy, funny stories to pull you through, this is the face of depression".
I am well aware of depression having battled the black dog for most of my adult life and have been medicated on numerous occasions. Conversely throughout the time of my boys' battle in NICU I managed without meds as I was expressing and I somehow survived. Of course now that years have passed and the immediate danger has subsided I am once again battling with my depression and anxiety. AND YET I still have cause to smile and I am fighting to overcome my depression and my depressive attitude - as I am well aware of the impact this may have on my children...
PE/ Stace,
Thank you for providing such a though provoking blog. While I can't always relate to everything you say and I certainly don't agree with all of your opinions, I always walk away from your blog having learnt something.
Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old
Twinsx2 and Helen talk about having a sense of humour about our situation in general. PE and the others are talking about specific humourous memories. Two very different things.
PE/Stacey,
My husband had drinks with a work colleague who has a disabled 11 year old (former 28 weeker). When he got home, he was quieter than normal and he said to me:
"it was just nice to talk to someone, other than you, about what life is really like."
He reminded me that we're in this together - sometimes I forget.
Our conversation also reminded me how lucky I am to have found some of these online communities (like TPE).
Do you know of any resources for the husband? I find that most of these boards are dominanted by "the moms"
Thanks!
Sarah
Sarah wrote: "Do you know of any resources for the husband? I find that most of these boards are dominanted by "the moms""
Hi Sarah,
I've tried, for a few years, to get hubby to start a blog or an online group. I feel his thoughts would be very valuable to other dads, just like these groups are valuable to us moms.
But, I have a very typical hubby. His response, "Yeah right". hehe He is a wonderful resource when involved in a discussion about special needs. We've been out with other parents and he jumps right in. He is just not the type of person to start a group. I am going to keep working on him though. He is a very funny person and I think other dads would relate to him.
Sarah, I just thought of something else..
Helen, Doesn't Jeff Stimpson have a blog? I thought I remember talking to him about it.
He does have some resources here
http://members.tripod.com/jeffslife/HOME.HTM
He is the author of "Alex-The Fathering of a Preemie"
Stacy
Stacy,
I just wanted to take a minute and say - Thank You - for this post. Life around my house has been really hectic lately. We are in the midst of major school-related issues, and humor is in short supply. You have reminded me that these are NOT the memories that I want burned into my mind. After everything wound down last night, I pulled out my photo albums and remembered. I went to sleep with the image and sound of my son's first real laugh dancing around in my head.....
I have noticed an interesting phenomenon on the preemie lists/ blogs over the last 10 years or so, which is that only one of a couple usually does all of the posting.
Jeff and Jill Stimpson are the one exception that comes to mind, and Jeff's website and other online contributions, and his terrifc book, are excellent resources for preemie fathers.
The only other couple I can think about who have spoken out together are Robert and Peggy Stinson (similar last name to Jeff and Jill!)-- authors of _The Long Dying of Baby Andrew_ written as alternating "his" and "hers" journal entries.
There are a few preemie fathers who do most of the posting on groups like preemie-l, preemie-c and NAROF, but generally speaking it is only one of the couple, usually the mother.
DH just has a visceral "guy thing" distaste for "support groups" online or otherwise, but every once in a while he meets another dad through his work or socially who is coping with a similar situation, and an instant bond forms.
DH has also accompanied me to several medical conferences and even participated. But just call such an interaction "support" and he wants no part of it!
Hi. This is Jeff Stimpson. I'm delighted to find this blog (and delighted to find my name on it -- thanks Helen!). I would like to mention the blog on my Myspace preemie page. Are you all looking for new members/participants?
Also, if anyone's interested, Jill and I have podcasts about life with Alex, a former preemie and now PDD-NOS. They're at http://jillandjeff.podbean.com
Thanks!
Jeff Stimpson
www.jeffslife.net
Post a Comment