Tuesday, October 25, 2011

Dragon Mom...

A few days ago an article from the NY times was posted on a friend's Facebook. I've been thinking about this article for days. It's put me through several different emotions, and has also put some things into perspective for me. I have decided to share it with you, but first I have some things to say about it. Just like any normal person would, I have my days of anger and sadness. The days where I question the lord and why he would give my son a life of pain and complication. Don't get me wrong, I am beyond thankful to him for saving my sons life and I do give him credit where it is due, but lets face it, Parker will be two months old tomorrow, and he spent the first 40 days of his life confined to a hospital, had major organs removed, has labs drawn 1-2 times a week, sees his kidney team every 2 weeks, his pediatrician every month, and will need an organ transplant when he's 20-22 pounds. In the meantime before transplant we live in fear of seizures, strokes, and infection- which could lead to death. After transplant he will be on anti-rejection medicine for the rest of his life, see his kidney team multiple times a month,  have labs drawn, and live in fear that his new kidney will fail. For the rest of his life, he will have to monitor his liver, because guess what, this disease affects his liver, too. Sounds horrible when it's all spelled out in front of you, doesn't it? What's hard to believe, after you read all of that, is that so far, his case is much better than a lot of ARPKD kids. Like I said, I give the Lord all of the credit in the world for saving my sons life, and I thank him daily for that, but the mother in me also has the days where I am mad at him, because ultimately he chose this painful life for Parker instead of a life of normalcy. And if I could, I would take all of it away from Parker and endure it myself, but I can't. So since I can't fix it, I get mad. I've learned from others that this is my healing process and that one day I will look back on it and know that god does everything for a reason. I am working on that as we speak, which brings me to the Dragon Mom. Right before this article was posted on Facebook I was having one of those nights.  I questioned "Why Parker?" once again and thought of all the people that I know who take life for granted. I remember thinking that those people don't know how good they have it and that they roll through life so unappreciative. And then I got a slap in the face...

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
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.

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.

The End.

....So as of today I have decided that I will no longer be ungrateful or unappreciative of what I have. I will embrace each new challenge that is thrown our way and thank god each time we cross another hurdle. I cannot promise that I will not fall off of the bandwagon, or that I will not have moments of anger. I can, however, promise that I will do my best to remember God's grace and continue to live for today instead of holding on to the past. I will strive for the best for Parker, but if he wants pudding and cheesecake for each meal, then that's what we shall have.   

Friday, October 21, 2011

8 weeks old...

Today, Parker is eight weeks old. It feels weird, though. Although it feels like I just had him yesterday, I also cannot believe it's only been eight weeks. This has been the LONGEST eight weeks of my life.

Parker is doing well and has adjusted to home life. He wakes us up every three hours like clockwork to eat and is now eating 75 cc's every three hours. The dialysis is a breeze. Honestly it's probably the easiest part of our routine. He doesn't mind it one bit, but then again he doesn't know any different. He has been on dialysis since the beginning of his life. He does have a handful of medicines that we have to give. His sodium is low, so we give him 16 cc's of sodium through his diasylate solution. His potassium is high, so we give him Kayexalate. His iron and magnesium are low; therefore, we give him supplements. Then he gets a multivitamin and his epogen shot. He only gets the shot on Monday and Friday, and we are lucky enough that Aunt Crystal has volunteered to be the bad guy who sticks him. This is not a lot of medicine at all given his condition. Many kids with his disease are on 10 or more a day. We are lucky.

There are several things in life that piss him off royally. He hates taking a bath and having his blood pressure taken. He despises the magnesium supplement that he gets twice a day, but if you smelled it, then you'd understand why. He lets you know when it's time to eat and when he's pooped himself just like any other baby. He has a major problem keeping his nuk in his mouth, but is getting better at it. Jason and I have declared that we will become millionaires and develop a mechanism that will keep his nuk in his mouth for him. I will let you know how this goes!

There are several things that I have decided we cannot live without anymore. The fisher price aquarium that entertains him in his crib is a MUST have. I have stated this to several people, but if necessary I would rob someone for another one of these. Yes, you heard me right. That's how good this thing is! Also, we were never people who used a whole lot of batteries. Actually, before Parker, I cannot remember the last time I purchased batteries. Now, we cannot live without them. Especially, "C" batteries. Anything that moves, vibrates, or sings, is AMAZING. He lets you know that it has stopped moving, vibrating, or singing too. He is spoiled to this. Lastly, the new Samsung video monitor is AMAZING. We are still trying to figure out a good setting for the alarms, but I love it. Parker has to stay in his crib, in his room way across the house. So, this monitor has brought peace and comfort to Jason and I while he is sleeping. Did I mention that I LOVE IT?

Our dogs, Phoebe and Bear, are still adjusting to having a baby in the house. Bear is a little more used to this than Phoebe is. He's very calm and isn't phased by the crying. He tends to be more protective when other people are here, but other than that there are no major changes in his behavior. Phoebe, however, seems very confused by Parker. She is no longer the "baby". She isn't the one that is being held all the time. And to top it off, the crying comes from this small human. She tries to get to him no matter where he is. Either it's her trying to comfort him, or her trying to say "Hey you! Shush!", I haven't figured out what she's thinking yet.

Sunday, October 9, 2011

A week of madness..

I know I'm a little late updating this, but I am still going to write it for Parker's book.

Monday started out as a pretty good day. Our dialysis team called us bright and early to tell us that Parker had done so well over the past week, that we would be moving to the floor. We packed all of our stuff up and headed to New Orleans. When we got there I reminded the nurses (just like I did every day) that Parker had to have his "little man" surgery before we left the Nicu. Well, they drug their feet for so many days that surgery wasn't available to come up and do the procedure. Unfortunately, we were sent back home and told to return on Tuesday.

The surgeon was supposed to be doing the procedure first thing in the morning Tuesday, but by mid-afternoon he still hadn't showed. At this point I'm furious. The dialysis team and nephrologists weren't too happy either. The nurse finally called the surgery team back and they said they weren't coming. I'm beyond mad at this point, but the doctors agreed to move us to the floor anyways, so I didn't say too much. So, Tuesday night we spent the night at Children's with Parker and did our "home trial". We had a dinner date with Aunt Namie in our room and attempted to relax. Those of you who have ever been in the hospital, know that this is hard to do.

So Wednesday morning rolls around and still no surgeon. Finally I tell the doctors and nurses to cancel his little man procedure. If this was going to be the one thing holding us at the hospital it wasn't worth it. We could always have it done later as an outpatient procedure. Well apparently this got their attention. No more than an hour later the surgeons were in our room and 30 minutes later he was in surgery.

Later that morning Dr. Aviles- our nephrologist- came in and said, "well guys you are going home!" We knew that it was a possibility to go home that day, but we have learned through this journey that things change every minute; therefore, we did not get our hopes up or make any announcements.

By 3:00 we had escaped the hospital confines and were on the road. We had to stop at the pharmacy in New Orleans and pick up his prescriptions, which by the way took an hour. This is the reason we did not get home until 5:30. Once we got home, let our parents visit for a little while, unpacked, set up the medical equipment, connected him to the dialysis machine, ate, and showered, it was almost midnight.

Thursday morning was spent assembling gifts from the baby shower we had on Sunday. Around lunchtime Jason had to leave to go to work and wouldn't be back for a couple of days. Parkers first pediatrician -appointment was at 3 o'clock. Then we had clothes to wash, had to bring daddy a few things he had forgotten, bathed Parker, connected him to the dialysis machine, ate, and showered. Also, remember that he HAS to be woken up every three hours to eat. He has a very strict diet. So, as you can tell, it's been a little nuts around here.

Friday morning we had to do lab work at the local hospital bright and early. Parker slept most of the afternoon, so I was able to relax a little.

Today we had his bowling benefit. A lot of our friends and family showed up to support us. Everyone had a good time and enjoyed themselves! Thank you to everyone, especially our dear friends who have worked so hard to make it a success. We love you all!

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Tuesday, October 4, 2011

We've made it to the floor..

Today we got moved from the Nicu to the floor. As I've said before, this is a huge step for little man. We now get to stay here with him, instead of traveling back and forth every day. We even had dinner and visited with Aunt Namie. Parker is loving his new big boy bed, too. It's huge!

Monday, October 3, 2011

Crazy busy..

Have you ever come across that random person who is going in a million different directions at once? You all know who I'm talking about- and at some point we have all been that person. Well I am here to apologize for neglecting the blog. Things have been so crazy busy that I have completely lost sight of keeping track of it. I am actually pretty upset about this, too. Not only because you all have followed our story so intently and deserve better, but also because I wanted it to serve as a way for parker to go back one day and read all the details of his journey.

Since my last post, we have had a few bumps in the road, as well as a few successes.

Now remember that September 29 was our due date. So, technically Parker is just supposed to be getting here, but he was already 1 month and 3 days old on that day.

Let me first say that the team we have is amazing! Each of his dialysis nurses are wrapped around Parkers finger. Sorry guys but it's true! They are pretty much like family. When they come in the room, there is no formal way of speaking. We talk to each other like we have known each other for years! Now, although they are like family, they still have a job to do. Sometimes this job can be dirty. Last week we had to find out what Parkers "dry weight" was. This is his weight with no fluid at all. This information is essential in his treatment so that they can accurately dialysize him, but I can honestly say it hurt their feelings to see the side effects. Think about it like this, what happens to me or you if we have no fluid? We get dehydrated, right? Well along with dehydration comes vomiting. Right after we started bottle feeding Parker is when they dried him out. The vomiting got pretty bad for a few days. It was miserable to watch.

Well, because he was sick and vomiting, he wouldn't eat all of his food. The doctors started talking about a g-tube, but I wasn't hearing anything about it. I knew good and well he could eat without it. I had seen him do it right before they dried him out. I was not giving in to this without a fight. Well, Parker must have heard them, and he didn't like the idea any more than I did. The next day-Friday September 30th- he began eating all of his food and quit vomiting. I was a very proud momma on this day. Since then I am happy to report that he takes the whole bottle in 10 minutes and is still looking for more!

After 2 days of proving his eating capabilities, we were able to take out his feeding tube! On this day he became completely tube free!

Today we were supposed to leave the nicu and be moved to the floor, but we weren't. I have been saying for a week now that he needed his "little boy surgery". You know the one I'm talking about. Well they always told me that they would do it right before we left. Today they called for the surgeon to come do it and he couldn't. So tomorrow morning he will be there and then we can go to the floor. This is a huge step for us. The floor is for children who aren't so sick. Plus our hospital will not discharge our situation from an intensive care unit. We have to be on the floor for a little while doing what is called "home trial". Basically we will not have monitors, machines, and the one on one care we have in the Nicu. Jason and I will be doing it all on our own. We will give all of the medicines, connect and disconnect from the dialysis machine, and take all of his vitals. Basically we get to play house, but at the hospital. I'm not sure how long we will do this for. The only answer we keep getting is "it all depends". I will keep you all updated.

On another note, yesterday was my baby shower. Thank you to everyone who came and for the amazing gifts. We were up pretty late last night washing, organizing, and assembling. We had a blast and it will definitely all get used!

We hope to see everyone at the bowling alley Saturday for the no tap tournament. It should be a fun-filled day!

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