A New Blogging Mom

On of my friends has just started blogging so if you would be so nice and pop over and check her blog out that would be great. If you would like to leave her a comment I think she would like that but please remember BE KIND.

http://www.marrerofamilymakingthemostoflife.blogspot.com/

Notes From a Dragon Mom

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

Ronan is fading, but our day-to-day experience with him is often peaceful, even blissful: cuddling, feedings, books, walks, naps. We brush his teeth to keep them from rotting even though he will never use them to chew solid food. It doesn’t always feel like enough. I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Ronan and his Dragon Mom

Its been a while since I posted. Nothing strange or exciting has really been going on. Eoghan started back at Irish classes on Saturdays. Maurs tried out for the basketball team at school and was picked for the team. So she goes to practice on Tuesdays and Saturday so she cannot go to Irish class as they are on at the same time on Saturday.

Finnian is Finnian and having good days and some great days and then of course a few crappy days. Right now he is sucking back O2. His alarm was ringing just after 2am letting us know he needed a little help in the breathing department and at 4:35am he had a big tonic seizure and his O2 dropped even more so we had to crank the O2 up to 4 liters. His heart rate went up to 179 which wasn't too bad well not for him anyway his heart rate has been higher at times. I used the magnet and even then his seizure was 6 mins long I was getting the diastat out when he came out of it.

You know he had a great day yesterday and the day before and even on Saturday he was in fine form so I was waiting for the shit to hit the fan. I know so many tell me I shouldn't think like that but its what always happens so I never get too comfortable.

I wasn't on the computer much over the weekend so I was doing all my catching up in the wee hours this morning. I was heart broken to read that Noah King one of Finnian's buddies from Down Under had gotten his Angle Wings at the age of 10 years old.

I hope Finnian behaves himself today as Mammy is working on very little sleep

Up early on a Saturday morning

There are some nights that Finnian only naps and last night was one of those nights. As long as his music is playing he is quite happy and he will amuse himself. He usually sings along, wrestles one of his many animals that are in bed with him or he will kick the side rail of his bed. I don't know how many times I have been looking for the pin that lets the side of his bed down. It gets loose from all the kicking even though I tighten them up every day.

Thursday and Friday he had an increase in seizures well really in the past 2-3 weeks they have been on a steady increase. On Thursday when we were on the highway going down to the hospital he decided to have a pretty big tonic seizure so I had to pull over as his O2 was dropping and his heart rate was climbing. His nurse got out his magnet and zapped his VNS and I got the O2 hooked up on him. I didn't even look at the nasal cannula I had put in the bag but when I went to put it on him we laughed it was a baby one thankfully there was another one in his bag. We were a wee bit late to the first appointment but everything was fine. On to our next appointment which was a bladder function scan. The final result they are putting him on flomax and then we go back and get him checked out again. They don't want him to be retaining huge amounts of fluid in his bladder cause that could cause more issues.

Friday morning started out with Finny having 5 seizures by 9:30 am. So we just loaded him up in to the van as he had another doctors appointment. So off we go at least this time he waited to have his seizure while we were on the street by the hospital and not on the highway. SO get to the doctors and told them about the new med he is on for his peeing issues. She wanted to know if this was something new with Finnian but alas its not. Even last year they were debating about putting him on something for his peeing issues. For a while we would see his inability to pee right before he would have a big tonic clonic seizure.

Saturday was another disaster day with seizures and yet again I had to pull over on the side of the road. Thats why I don't want to go anywhere by my self any more with him in the van cause you just never know when those suckers will hit. I keep my rear view mirror trained on Finnian's seat. Years of driving the postal LLV and only using the side mirrors has come in real handy.We go this week to see ortho and neuro I hope they just adjust his meds down and turn his VNS up another click and with the ortho we get to see what's going on with his thumb on his left hand and get his hips and spine checked out to make sure all is ok there. We know he has to get new long legs so we will probably be getting to see John or Walter to get them made.

September

Well the kids are back at school. I should say Eoghan and Maurs are we are still getting Finnian's school year with home instruction and therapies set up. It poured the first 2 days of school so we didn't get to take any pictures out side maybe Monday I will be on the ball and get out early to take some.

With all the rain poor Finnian was having increased seizure activity. It seemed everyday he was sucking back O2 for a while. The VNS magnet was getting a work out of so it seemed. Then Friday was a shitty day for poor Finn man. I know until we get what he was having on an EEG they won't say its a seizure. It will probably be like last year take him to cardiology, pulmo, movement etc and the answer will be like last year its neuro in origin. Then again September, October and November are always seizure months for Finny just like February, March and April seem to be the same.

Well Eoghan is in 6th grade cannot believe it and he like his teacher so thats a good sign. So the rules this year if he ends up that he has to go to summer school he will not be going to Ireland with Nanny and thats only fair to make him work for something he really wants. Maurs is in third grade and she likes her teacher its her first time having a man teacher. He is a great teacher Eoghan did well in his class when he had him. He makes learning fun for the kids and he gives them a good bit of homework.

Our Finnian slept for 15 hours after his shitty Friday. In a way I am glad he does have a feeding tube so getting his food and meds into him wasn't a problem. I was a bit nervous that he was sleeping so much. I woke him up and he was up for about an hour and then he went back to sleep again. you know he got diastat yesterday as we have a stinky poopy boy today.

Next week is kinda busy with doctor's appointments Finnian has 3 and I have to go back and see the GI well I need my medication for my belly. I know, I know I shouldn't drink as much coffee stay away from the ice cream, milk, chocolate and many many other things and I probably would be all right but hey no one is perfect.