As I sat and listened to Paige tell her classmates how she came into this world, and all of the little letters that the docs use to describe her, I smiled at how comfortable she was talking about her world.
See, we have never hidden the truth from Paige. Never. She is present at EVERY doc visit, consult and always during the time we give history. When the docs ask us questions regarding her health, we tell the docs to let her answer for herself.
Over the years we have had mixed responses from docs and nurses. Some give that pouty look to Paige when we give her history. It's hard for them to hear so they assume that it's hard for Paige to hear. Some docs are impressed with her maturity and understanding of her own body and issues related to her prematurity.
The bottom line is that Paige lives in her body, with those lingering issues. Hearing about them does not make them worse. But, giving them a name has helped her understand herself and why she feels the way she does.
13 comments:
I have really struggled with this issue. My boys are almost 3 years old and are very aware of everything around them - hence I am sure they are starting to understand some of the words we use when we see the doctor. Mitch has even started practicing saying "aahhh" for the "dotor".
My problem is this...how much do I let them hear about their early start? I don't want their prematurity to define them. As a nurse I used to be very concerned when young children would rattle off their medical history - I would think "you shouldn't know all of this, your life should be focussing on being a kid, not being a patient". And I confess to still feeling that way now.
But then I realise that both boys will be asked why they are small and why they have scars. And so they need to be able to talk about their early arrival. BUT I don't want them to become fixated on their various health issues, to the detriment of their mental well-being.
It is such a fine balancing act. And Now we are facing the probable diagnosis of CP for both boys. How much should they hear? I just don't know...
Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now almost 3 years old
Hi Lisa,
By the time Paige was 3 she would point to the part of her body that the doctor was talking to me about. Paige has mild CP which causes her legs to hurt. As soon as she caught up in speech, she started telling the docs about the pain in her legs.
Paige knows her body works a little differently than her peers. Even if she would have never heard that she was born early, the pain would still be there and she would still run differently than the other kids.
As much as she knew all of the medical terms that described her body, it wasn't until a few years ago that she knew it was due to her early birth. I was speaking to a group about the long term issues that preemies face. As soon as it was over she came bouncing over to me saying something like, "that's why my legs feel this way?" When she was 5 she met another little girl, her age, that was also born early. Paige was thrilled to know that she was not alone. I had never realized that she felt that she was the ONLY preemie.
I have spoken to adult preemies who have helped me with this issue also. The ones who knew about their early birth had an easier time as adults (in dealing with the long term issues).
You wrote: "I would think "you shouldn't know all of this, your life should be focusing on being a kid, not being a patient". And I confess to still feeling that way now."
Paige is very much a kid. Her entire day doesn't revolve around her prematurity just because she has the knowledge. I would also feel sorry for a child who was not allowed to be a kid.
As an adult, it's hard for us to hear kids talking about issues that are upsetting to US. But, when that is all that they know and feel, they are not traumatized.
At the end of the last school year one of Paige's classmates had a seizure in class (his first one). Everyone freaked out (teacher, students, etc) except for Paige (she has epilepsy). When the little boy came back to school a few days later I witnessed Paige talking to him, when all of the other kids were afraid of him. She was describing how a seizure happens (in her own 7 year old way). Her and the little boy traded stories about the EEG and he felt so much better. I saw his parents that day and they were crying around their son, while talking to the teacher. Yes, it's traumatizing to the adults but the child was already settled with the news and he went on with life.
On a side note... During Paige's last neurologist appointment she was discussing, with the doc, her leg pain. She offered to put Paige back on meds but Paige is still opting to stay off of them. (we give her as much control over her care as she can handle) She mentioned how much her legs hurt after running in gym class, due to her CP. The doctor told her that she would write a letter to the school so she wouldn't have to run anymore. Yikes! I stepped in and put a stop to that immediately. I reminded Paige that she has no problem handling the pain when she runs around the playground so she would not be getting out of gym class just because she doesn't LIKE to run. The doc told me that there will come a time when the note will be needed and she will have no problem writing it for me. But, Paige was being a stinker and she wasn't happy that I busted her. hehe
i kinow i won't have a problem with this.
as a nurse and a mommy, i have empowered my children at very small ages to tell their docs how they are, what hurts, etc.
my 24 weeker is aware he was oh so tiny. he sees his old "owies" and knows they were from when he was tiny. he will tell you his memories. he will share with his docs, therapists and teachers.
healthy or not, disabled or completely able bodied, i believe a parent should empower their children to be their own advocates for their healthcare. just imagine the kind of patients they might be in the future.
Off the subject a bit but hoping you can provide some insight. My daughter was born at 24 weeks and is 13 mos old (9 mos corrected). She is crawling, pulling up and taking some steps. Her PT said that we can basically rule out CP. I noticed that your daughter, and others, were not diagnosed until the age of 3, so how can my PT rule it out? Are there early signs that predict CP?
Thanks!
My daughter was actually not officially diag. until age 6 (approx.). We moved to a new state and the new neuro took one look at her, after I asked him to evaluate her, and agreed that she has mild CP. It's hard to see in her.
Paige knew something wasn't quite right, very early on. When she was young she used to hold her legs and whine. When she could speak she used to point to her legs and say "hurt". The hardest time for me was when she was playing in a mall with kids her age (about age 4). I noticed they could run faster and for longer periods than her. She came up to me and said, "Mommy, how come my legs don't work like the other kids?"
There is no way your PT can completely rule out CP at that age. (my daughter was fully walking at 1 year old adjusted age) However, if CP is not very obvious now, if your child does in fact have it, it will be mild.
Unfortunately, mild CP is just one of the many "wait and see" issues of prematurity.
To Anonymous 11:42 -
There is cp, and then there is CP. Cerebral Palsy is really just a catch-all phrase to cover Brain Damage that occurs before the age of two that causes physical (gross or fine motor) dysfunction. My son is 10, with a dx of Moderate Spastic Quad CP. He recieved his "offical" dx at the age of 18 months, but it was totally obvious that there were issues by the time he was 6 months actual. He does not sit, stand , or walk independently, and his CP is obvious to all. When dealing with mild to extremely mild cp, the DX comes later, if at all. Kids will often simply be labeled "clumsy" , "messy", "lazy", etc. This is, in my opinion, a much more insidious form, because it can really mess with a child's self esteem. Everyone says "If you would only try....."
What your PT is telling you is very, very, good news. Namely, that your child has escaped a severe physical disability. Rejoice in it. Celebrate everything your daughter is doing.( At 9 months corrected, she is really even motorically advanced!) I think what is being said here is still keep an open mind, that if motor skills seem off at a future date, that the issues still most likely will come from the inital prematurity.
Hi Stacy.
Max is definitely aware that he is "different" from his peers. When he's hungry, he asked to be "plugged in" (although every so often he'll venture to eat some yogurt or drink some juice). While he may not be able to talk about his early and traumatic beginnings, we don't hide it from him either. We show him his early pictures, as well as pictures of his twin sister, who passed away at two months. We explain to him that he was really, really small and why he has the "owies" on his hands and legs and scars on his stomach (from Nissen and g-tube).
He seems very aware of his body and, as he gets older, wants to have more and more control over what "happens" to him (feedings, breathing treatments,etc). We do our best to include him by allowing him to "give" himself meds through the tube, or hold the nebulizer mask, etc. Of course, everything takes longer this way, but I think it's important for him to have these experiences and feel more in control.
Take good care,
Heesun
My Son is 10, and I take a middle of the road approach to what he medically handles. For instance, he can totally explain how early and small he was, he can give a very good definition of a brain bleed, and explains Cerebral Palsy in good, laymans terms. He also has a good grasp of his seizure disorder (yes, at this point I will continue to shy away from the word "epilepsy". To me, 2 seizures does not a lifetime diagnosis make!) He can explain the medications he takes, and why. BUT He is not involved in discussions of, nor can he explain, his ADHD-ODD, sensory , emotional, or behavorial issues. We deal with them, manage them, and strive to provide the tools for him to gain self control ( and yes, that does include medication as needed) but I refuse to give him the "crutch" of saying, I act this way "because......"
To PE & Future of Hope,
Thank you for responding to my off topic comment- your insights are VERY helpful! FOP, I try and rejoice the probability that my daugther missed the CP bullet but then my fear of the future, the scars from being born at 24 weeks, creep in and smack me back to earth. That is what I am finding most difficult about being a preemie mom. I want to so badly live in the moment but too often I am drawn back to the past or stuck worrying about the future. I need to start living in the moment with her. Like PE said, there are always the "wait and see" issues with micro preemies. I think I need to wait to be scared when I see them and not a moment sooner.
Thanks again for the information!
Dear Anonymous,
We were told by both our Neo and physio that both boys had no signs of CP. And then on our last visit to the Neo a couple of weeks ago he dropped the bombshell that the boys' lack of coordination he thought MAY be due to hypotonic CP. I felt gutted after being reassured so many times that they didn't have CP. In their case their CP (if that is what it ends up being) causes them to walk and run in an uncoordinated way - they have low muscle strength in their torsos and legs. The Neo also suspects this may be why one of my boys has speech and feeding problems.
BUT now that a short period of time has passed I can look at it this way - my boys were born at 24.6 weeks and were not expected to survive due to serious medical complications. Today they play, laugh and enjoy life. Harry is completing 20 piece puzzles for 3 year olds and Mitch's speech is improving daily. They LOVE food. They LOVE "pay" (play). And they LOVE their daddy and I. At this stage who could ask for more.
Hugs,
Hope this helps,
Lisa
I just wanted to tell you that I tagged you on my blog for 8 random facts/habits about you. :)
Hi everyone Another great post.
My son knows much of what he's been through and has seen some of the photos, of his "hospital" stay when quite young (at the time these made him sad), however he talks about the photos now and then.
He is aware of his scars, learning differences, other sensory issues vision/hearing/CAPD.
We have always been open about his life. The hardest thing has actually been more about his sibling, and helping understanding there!
I guess that is common!
GBS's mom
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