Tuesday, February 24, 2009

"You're Lucky"

Whenever people hear that Paige has escaped some of the big medical long term impacts related to prematurity I hear, "you're lucky".

Well tonight I am sitting in my room crying.

Paige is in her room crying.

Freaking out.


The meltdown started at bedtime and is still going on. She lost it. She is having thoughts that the police are going to come take her away. I don't even know where she got that thought from. She just came in my room, screaming at me that she is having thoughts that her brother, father and I are going to die. This hasn't happened in such a long time.

I can't hug this away. I tried tonight. Believe me I tried. She cries harder.

So, to all of you who think we are so much better off because prematurity did not leave it's mark on Paige's lungs or her muscles or her intelligence. Think again.

My baby is suffering right now and I can't fix it.

I don't feel so lucky right now.


Carrie said...

I am sorry. It sucks not to be able to help your child.

ThePreemie Experiment said...

I just checked on her. She is finally calm and almost asleep.

Me? I'm emotionally exhausted.

MommaWriter said...

We also get that kind of thing on a much lesser scale. It absolutely kills me...and G's fears are even somewhat rational, just much bigger than I wish they were.

I'm really sorry you had to deal with that tonight and that Paige has to deal with it because that has to be terrifying for her too.

I hope you get a really good night's sleep. Emotional exhaustion is tough...and what preemie mom doesn't know that?


Anonymous said...

I'm sorry that you have to experience that, but really, mental illness is pervasive among so many stratas and may well have nothing to do with birth hx (look to "odd" relatives first).

Sarah Blake said...

[hugs] You all are in my thoughts... If this keeps up, check in with the doc. it could be that puberty and illness are interacting and her med dose needs adjusting. i went through some pretty intense fears and mood swings during my teens. sadly, i kept them to myself. it is stressful for you but good that paige feels safe to tell you how she's feeling. this truly tears me up with my own memories... I used to have recurring dreams that my parents and sister went on some vacation without me and were all killed. there was really no basis in reality to the dreams, but the recurrence made the fear very "real" feeling.

future of hope said...

I know you don't want to hear this right now, but you ARE that much better off. Your child still has a chance, not a guarantee,
but a chance at a *normal* future. With the right combination of medication, and therapy, and maturity, she still has a chance - the door hasn't been shut yet.

You are right though , you're not "lucky". A child in pain, physical or emotional, is still a child in pain. There is nothing good, nothing lucky about it. I can't say that I understand the life that have, anymore than you could fully comprehend mine - but I can say I empathize, and I'm sorry, and I understand the pain that comes with not being able to fix it.

Anonymous said...

Helen Harrison to Anonymous, 3:54 AM:

When fullterm and preterm-born children, adolescents, and adults are examined side-by-side, those who were born prematurely have *highly* increased odds for just the sort of psychiatric issues that Stacy is describing here in Paige (at least 2 to 3 times the incidence in most research I've seen).

MRI studies are currently defining the prematurity-related damage and abnormalities in the brain that are associated with these psychiatric disorders.

Family history may play play an overlapping role in some cases, but with prematurely-born children, it very often doesn't.

Serious psychiatric problems are now recognized, by most knowledgeable professionals,as being important prematurity-related sequelae right along with CP,ROP,lung damage and learning disorders.


Anonymous said...

Helen Harrison to future of hope:

I think that prematurely-born children with psychiatric disorders have about the same chance to be *normal* eventually as do children with CP.

At some point, effective treatments for both these conditions may be found, but in the meantime there is only so much that can be done.

Psychiatric drugs and therapy, as with botox or orthopedic surgery for CP, can mitigate the effects of some of the abnormal neurological responses some of the time, but the damage to the brain itself cannot be undone (at present).

My son has CP and has also struggled with irrational fears and panic throughout his life. As he has aged, his panic has been dampened (not by drugs, but, I think, by age and growing trust in his environment and some sort of mellowing effect on his brain). But the tendency is still there and because of it (and other deficits) he must lead a *very* sheltered and controlled life.

His emotional base-line is more stable (at the moment), but he is far from *normal* emotionally.

I think there are times, as preemies age and their brain damage/abnormalities become more or less unstable and their behavior will change temporarily. This is certainly true with truly normal children as well -- think puberty. Maybe this is what is going on with Paige.

But the damage to the brain that causes these psychiatric abnormalities -- and horrible over reactions that accompany normal brain development -- are ultimately every bit as real and intractable as the damage of CP.


Sheila said...

To those who prefer to mention that the common sequelae of prematurity also happen in the absence of prematurity, I'd like to point out that your POV is self-serving and denial-filled. If we look at a war-torn, draught ravaged third world country and said, their starvation has nothing to do with the fact that they are living in a poverty stricken third world country - because people starve to death every day in NYC. Most intelligent people would see the insanity of that argument. Yes, people starve to death in NYC ... but the RISK of their average neighbor starving to death is microscopic - but that same intelligent person, could look at the starved to death Somali child and realize that the child's siblings are at great risk for the same fate.

Of COURSE mental disabilities, psychological illness, CP, vision and hearing problems exist outside the preemie cohort ... but MOST FT healthy born infants are NOT at high risk, the risk they DO have is not measured in the double digits. It is disrespectful to the NICU graduates and their parents not to acknowledge that we KNOW our current technology graduates them with permanent lingering impacts to their brains, which will have an undetermined effect.

I would like to mention that just prior to reading Stacy's post - I was reading a story on CNN this morning about an 18 year old autistic child in jail this morning for killing his college professor (and apparently sole caregiver) mother.

Almost every year on preemie lists, parents write anguished posts because they have to consider placing their increasing violent former preemies for the safety of their other children and themselves - as well as the former preemie's actual security. And it tears them apart... they are destroyed emotionally, even while knowing it is the right choice.

Living in America with any kind of mental illness is not a "normal" life. Above and beyond the individuals personal struggles to get on and stay on appropriate drugs, they face extraordinary prejudice and difficulty integrating into "normal" society. It is not outwardly visible like a wheelchair or walker, but it more feared, less understood, and typically treated with less sympathy and understanding by the general public.... There should be no concept of "worse" in this population. If you're not having a normal life - you aren't.

Anonymous said...

Helen Harrison adds to Sheila's comment:

And just imagine being psychiatrically disabled and living in a place like Somalia!

If we don't emerge intact from our economic difficulties, we may become a "third world state" ourselves.

Not a bright future for our psychiatrically impaired preemies!


Susie Korbel said...

I can't even imagine how you cope with this sort of thing. I think I would just want to sit down and cry too.

RhondaLue said...

I'm so sorry for the bad day. I wish we could just call in sick (to regroup and get ready for the next meltdown or what have you)once in a while....but as moms we cannot.

I hope this is an isolated incident and doesn't happen again anytime soon. If that's too much to hope for I don't care, I'm still hoping it for you!

Joan said...

I thank Stacey for sharing this experience so that people may begin to have an idea of what children and parents are actually experiencing and suffering. Unless a person has actually witnessed this in a family member or friend, they are clueless as to what people are actually struggling with.

It's a relief to read this post - to have the reality of this experience expressed. Yes this is what it is like. On the one hand, read the myriad and increasingly accumulating piles of research showing that the brains of prematurely born children are altered in a myriad of ways. Read Stacey's post to understand what this might mean in the day to day life of a parent and child. A child in extreme emotional distress and a parent in despair with no real resources or means available to help her because there is no real help out there.

I have found Sharon Heller's book "too loud too bright too fast too tight: what to do if you are sensory defensive in an overstimulating world" to be fascinating food for thought to help to understand another perspective on what might be happening in the mind and body of our children with extreme reactions.

It is a useful guidebook to begin to frame experience, to attempt to understand it, and to give a different approach and perspective on how to respond to it.


S said...

Thank you for the post, I was stumped yesterday when someone asked me if my daughter (born at 26 weeks)was normal. I finally hesitantly said "she looks normal, she looks great, she has some issues... but yeah she looks 'normal'"

I am afraid people find me ungrateful for my daughters physical health and that is not the case I am very thankful I just don't have an easily understandable way to explain the mental, social, sensory issues to them.

liz.mccarthy said...

OK, am I behind or what, I'm so sorry Stacy, that's all I can say, truly. This unknown sucks for us mothers for our children. In that Paige is older, you are so much closer to finding out the lasting effects of prematurity.

Hugs to you!