What if everything matters? Or worse, nothing?

Malachi sits in what we call the "King's Chair," a twins nursing pillow I never ended up using for nursing but constantly put him in to round his back, make his hands more accessible, and encourage his brain to develop flexor tone. This is one of the many "little" things I do to try to improve his chances of motor control.
© Jessie Kirk Photography

I’m haunted by the idea that everything matters.

That every second, every minute, every day I am irrevocably altering the course of my sons’ development. I worry that through my actions or inactions I am setting them up for long-term disasters.

This may sound crazy or self-important or self-pitying. But the simple truth is that I am affecting them just by being around them and interacting with them.

Let me give you an example. I almost always hold them on my left hip because I need my right hand to do things. Malachi has trouble with balance and almost always leans to the left when sitting in a chair and his head tilts to the left even while laying on the floor. This means that the muscles on the right side of his body — those that I'm supporting when I hold him — are weaker; they are unable to pull his body back upright.

You're probably thinking that Malachi's damaged neural connections are just more severe to his right side. I might think that, too, if Jaden — his genetic copy without brain damage — didn't also lean to the left all the time.

And that's just something that I've noticed. What about the other million things I do without thinking that are altering the course of their brain connections?

When I was pregnant I worried about stuff like that — if I was eating too much candy or not enough vegetables I worried they might be bad at math or something. Now I know that much more serious things can happen. One poor habit might mean the difference between Malachi walking when he’s two or when he’s three, or never being able to use Ziploc bags or pour juice. 

What if something I can do now will allow his brain to fix itself so that that doesn’t happen? What if something I did means his brain will never be able to bridge that gap?

I used to think I would be the parent who was blasé about everything. I started out fully believing I would not get worked up over silly things like SIDS because those sorts of things are exceedingly rare and would never happen to me. But then horrible things did happen to me and horrible things can still happen to me and I have to do everything I can to prevent them.

I’m haunted by the idea that everything matters.

And yet, I'm even more terrified that nothing matters.

This seems to be the view of our developmental pediatrician. His attitude is that Malachi's brain will probably take whatever course it was going to take whether or not we do anything. Oh sure, physical therapy might smooth things out a little, maybe, but the damage is there and nothing will make it go away.

In some ways, this attitude is relieving. If there's nothing that can be done, then there's nothing that I have to do.

Sometimes, there really isn't anything you can do. There was another boy in the NICU at the same time as my boys who for some reason didn't have a right foot. Perhaps he had other problems, too, but I couldn't help thinking that if Malachi's problem was just that, just a missing foot, I could deal with that. OK, no foot. Got it. Normal walking won't be possible, but there are options. Grieve, move on.

With brain damage, it’s so much more complicated and so much harder to know what to do.

There’s this myth out there — I believe it’s a myth — that it could amount to nothing at all. That since babies’ brains are still developing, they can wire around the dead space and ba-da-bing ba-da-boom, basically normal kids. Then the spectrum ranges all the way up to severe retardation.

In between is reality and it’s messy. No brain damage is exactly alike but if it were, the rules governing which babies do better than others are poorly understood. It could be that by doing big things like breastfeeding or small things like not putting socks on so his feet can get maximum input, I’ve vastly improved his chances of normal movement patterns. 

Or, it could be that I’m wasting my time and energy on things that really only serve to make me a frenetic mom and only luck and chance will decide how normal his movements will be.

Does everything matter? Or nothing?

I have a sneaking suspicion that everything matters, but we would be happier acting like it's nothing.

The worst thing anyone has ever said

On the wall in my twins’ bedroom, there’s a picture of me holding my son Malachi for the first time. I’m in the NICU and he is so small you can barely see him under the blankets. I’m beaming make-up-less at the camera. I’m happy, relieved that the trauma of the previous few months is over. Everything really was going to work out for the best. The odds were finally in our favor. The horrific scenarios I had played out in my head ever since that terrible day of the ultrasound were finally memories, in the past, gone, over.

I was wrong.

Was it then? Was it in that moment when the picture was taken that blood was pooling my son’s brain? Was it my insistence that I hold him, my steadfast belief that he needed his mother’s touch as much as possible during those days in that heartless plastic box, was that the trigger? Or was it another time? Was it that nurse I never liked, did she handle him too roughly? Or was it during the birth, when I chased out anyone who tried to put a heart rate monitor on my huge belly? Am I to blame? Even if it wasn’t directly my fault, doesn’t ultimate responsibility rest with me? Couldn’t I have chosen another hospital? Couldn’t I have insisted on a different NICU?

I’ll never know what the cause of the brain damage was, but I know that life will never be the same. I know I will never have that smile I have in that picture again. I know I will be happy again, sure, but somewhere lurking behind my smile will always be the loss of innocence. The knowledge that things really can get that bad. That worst-case scenarios aren’t for other people.

Every time I watch my son Jaden reach a milestone or get better at manual tasks, I can never be truly joyful because I have to wonder if Malachi will ever do it, too. Every time I see Malachi act differently than Jaden I have to wonder if it’s because of his brain damage or simply because he’s a different kid. It’s not fair to either of them. It’s not fair to me. It wasn’t supposed to be this way.

I hear that a lot in my head: It wasn’t supposed to be this way. It sounds trite when I write it or say it out loud. I hear the automatic response: Yeah, life sucks, it’s not fair, tough shit, deal with it. But who could have even imagined this? Even during my wild fantasies — those ones that every pregnant woman grapples with — I never imagined it would be this bad. Not just twins. Not just a special needs kid. Both.

And yet, it could be so much worse. Both of them could have brain damage. Malachi’s damage could be much more severe.

And yet, it could be even worse.

You want to hear the most horrible thing anyone has said? One of my best friends was pregnant at the same time as me. She went in for her 20-week ultrasound and, just like me, found out horrible news. Only it was even worse: her baby had died in utero from a genetic abnormality. Within 48 hours, my friend gave birth — not aborted, but fully went into a day-long labor — to her dead daughter.

So here it comes, the worst thing anyone has ever said: I envied her.

I envied her because her life could go back to normal one day. The events of that pregnancy — while horrifically sad and traumatic — wouldn’t last a lifetime. She wouldn’t have to watch her daughter struggle every day with activities the rest of us don’t even think about. She wouldn’t have to wonder if there was something she could have done, something she could do or wasn’t doing every day to help her get better. There was no getting better, so there was closure.

My life will never be “normal” again, not as I knew it before, not as I imagined it being. I don't get to go back to the person I was in that picture, exhausted but self-assured, confident that things would turn out the way I knew they would.

It wasn't supposed to be this way.

Malachi's many cerebral palsy treatments

One of the things I hate about conventional doctors is this: They seem to think that research is one-way. They come up with some theory, get 100 people together and try it out. That's wonderful, but what they don't do much of is get 100 people together without a theory and observe who is doing better and why or — God forbid — talk to them about what they think is helping.

It drives me crazy to hear stories from people — including our medical folks — about kids who have brain damage yet are unaffected, or kids who "spontaneously" get better. Who are these people and why isn't someone doing a detailed survey of their lives and what could have caused their brains to repair themselves?

So, it's up to us, those who take care of people with cerebral palsy and those with cerebral palsy, to share amongst ourselves what we're doing and what we think is working.

To that end, I've compiled this list of treatments Malachi's crazy mom has made him endure already in his short life. Seeing it all written out here, it seems like we've done a lot, but I often thought in the beginning: "We're not doing anything!" It felt like it took forever for treatments to fall into place, and I still wish we had gotten started with some of them — CranioSacral therapy and homeopathy — sooner.

I have to add a disclaimer that we have no idea what if any of these things are working. I feel like something is working, though, because I think Malachi is doing well and he is progressing every day — albeit at a much slower pace than his brother. Perhaps they are all working together in concert, or perhaps one treatment is carrying the weight of the others. Or maybe he would be just the same if we'd done nothing. Could be. But, as someone told me at the beginning of this journey, Malachi's problem is complicated and thus requires a complicated solution. What follows is our complicated solution.

You can often find me stretching Malachi's legs or doing other bodywork on him. As you can see from this picture, he finds it easier to get his hands in his mouth when his body is folded as it helps to break up his strong extensor tone.
© Jessie Kirk Photography

Physical Therapy
We have two physical therapists, both of whom we are really happy with, though, to be perfectly honest, it took a few sessions to warm up to them.
The first is through the county's Early Intervention program. She comes out about once a week and gives us activities and equipment. She also turned me on to Qigong massage, which I personally haven't gotten to work but she can do it well and I've heard good stories from other parents.
Our other PT is through Doernbecher Children's Hospital. He is incredibly knowledgeable and really knows how to make Malachi feel comfortable, although we often have to push to get him to describe to us what's going on.
This leads me back to a previous recommendation I've made on this blog, which is to read Teaching Motor Skills to Children with Cerebral Palsy, so that you can incorporate physical therapy into your daily life and have the knowledge to even know what questions to ask.

CranioSacral Therapy
We have found a wonderful CranioSacral therapist and chiropractor in Korin Rasmussen. She has a lot of experience with babies and genuinely cares about her clients. CranioSacral therapy works through minor adjustments to the bones of the skull in an effort to improve the flow of cerebrospinal fluid, which  in turn should improve brain function. This is particularly good for babies because their bones aren't fused yet. Medical studies we've seen aren't particularly positive on the method, but we've heard many anecdotal success stories and think it's worth a try. Dr. Korin also is starting to do some chiropractic adjustments now that Malachi's getting older and has more stiffness.

Feldenkrais
We love our Feldenkrais practitioner, Joanna Cutler, who is very warm and generous with her time and energy. She teaches us how our movements often involve our entire body and shows us how to "go with" Malachi's movements to show him how they can be useful. For example, if he arches his back, we can arch it even further to show how that movement can be used to reach something above him, instead of saying: "No, that's abnormal, sit bent over like this." The aim of Feldenkrais is to use your body to retrain your brain as to how your body works. Again, there are some pretty spectacular anecdotal stories, like this one.

Homeopathy
I grew up with a homeopath as my primary care doctor and rarely took prescription medication or even over-the-counter drugs like ibuprofen or acetaminophen. I was written up in a medical journal for conquering mono in about a week thanks to homeopathy.
For the sake of the marketplace of ideas, I'm going to list the medicines we used here, but I strongly recommend consulting a certified homeopath as prescriptions can vary even depending on the patient's personality — they do not function like conventional medications.
About a week after they discovered the brain bleed, I began to sneak drops of Arnica Montana into Malachi's mouth in the NICU in order to help his body heal the injury. I wasn't able to do this as often as I wanted but it amounted to about once every other day.
Then, I consulted with a homeopath and he recommended Cicuta Virosa 12C, which I was able to give Malachi a bit in the NICU but mostly once he got home. In fact, I must admit that I used Cicuta Virosa as a crutch during the early months, often giving it to him simply when I was having a panic attack about not being able to do anything. Once I realized that I was giving it to him much too often and needed a plan, I consulted with Dr. Bruce Dickson. Dr. Dickson practices very far away, but as we were strangely unable to find a homeopath I liked closer to Portland, we made the trek. I'm glad we did. Ever since I started giving Malachi his prescription of Baryta Carbonica 6C, we've seen marked improvement. Though, I have to mention that we've also seen rapid development in his brother, too, so it could simply be what 6-month-olds do.

Naturopathy
Early on we consulted with a highly recommended naturopath nearby and I have to say we were not impressed. A big part of it was that her scheduler told us the wrong day, so we were double-booked with someone else and had tiny babies who could only stay awake and happy for so long. But we also thought her home/office was too dirty and unprofessional and her prescriptions were remarkably vague, especially for such a vulnerable patient as a preemie newborn. We did give Malachi added DHA and Acetyl-L-Carnitine in his formula for a while but I slacked off because those things are in breastmilk, too. I suppose I'll start up again now that I've stopped breastfeeding. Oh, she also did four acupuncture points.
She also mentioned the use of Red Deer Antler Extract and said that a patient of hers who had been born with "half a brain," had had some remarkable progress after taking it. However, when we looked into it we couldn't find much research on it and acquaintances with experience in Chinese medicine said it is a very powerful substance and should be used under supervision of an experienced practitioner. Since we didn't feel that that was her, we haven't pursued it. (But I would love to hear if anyone else has tried it!)

Chinese medicine
We consulted with Dr. Lü of Pearl Acupuncture & Wellness Center. We liked him and felt he was very knowledgeable but ultimately decided to concentrate on other treatments. We were surprised he didn't do acupuncture but instead taught us some acupressure points and a method of massage called Tui na. It involves pinching the skin of Malachi's back and walking your fingers with the pinched skin upward along his spine. Malachi hated it and since we never were able to find the time to do it with taking care of two babies, we decided to concentrate on other things. The residual effect, though, is that I do try to give him a quick "regular" massage whenever I can: diaper changes, playtime, etc. We may go back to him when Malachi gets older.


I hope this list is of use to someone and please tell me about your own experiences with alternative medicine. Even now, I am still looking into other treatments, such as LENS (Low-Energy Neurofeedback System), and Polish-style intensive therapy. I should also mention that we've decided that both hyperbaric oxygen and stem cell injections are too costly and unproven on Malachi's type of injury to pursue at this time.

Fast, easy dinner for under $5

I developed this dinner while living in Tillamook on the pitiful wages that budding journalists make — even more pitiful than what seasoned journalists make.

(During this first job out of college, I had a source at a food bank ask me if I needed an emergency food box. I quickly brushed her off, but spent the drive home wondering if I did in fact qualify. Turns out I was over the limit, but not by much.)

So anyway, we had no money and I literally took the cheapest things I could think of: beans, pureed tomatoes and close-date Italian sausage and threw it in a pot.

It's fast, easy and costs a few bucks, so I think it's great.

But I was surprised to discover that it is also my husband's favorite dinner, which makes it doubly awesome. Give it a try!

Spicy bean sausage soup

- Stick a pot on the stove.
- Fry up spicy Italian sausage (look in the discount bin in your grocer's meat section to save even more money).
- Pour in three cans of your favorite beans (I like to mix white, black and kidney) and a can of diced or pureed tomatoes.
- Heat until bubbling.

Done. Serve with bread, salad, whatever.

The wonderful thing about this soup is that all the spices are already in the sausage, so you don't have to worry about it. Yum!

Seeing the breast half full

My breastmilk and what I came to call my "yellow, plastic triplet."

It's hard to remember what I thought about breastfeeding before I became pregnant. I think it went something like this: "My mom breastfed me and I'm awesome, so I'll breastfeed my kids and then they'll be awesome. Great idea! High five!"

After I got pregnant I read books like La Leche League's "The Womanly Art of Breastfeeding" and others that made breastfeeding sound supremely easy — much easier than mixing, washing and sterilizing bottles. So, I thought, even into the first several months of breastfeeding: "I'll be home with them anyway, so it'll be easy. You know, some day. Not right now, obviously. Right now it's The Hardest Thing I've Ever Done in My Life, but it will be easy. Some day. Right?"

And perhaps it would have been. Perhaps if my body had had those extra 10 weeks of gestation to adjust to the reality of producing enough milk for two babies, it would have been easy. Perhaps if I'd had actual hungry babies at my breast instead of my horrible yellow, plastic, mechanical "triplet" for the first three months, it would have been easy.

Instead, carefree breastfeeding turned out to be just another normal part of motherhood that I would be forced to accept wasn't in the cards for me.

For those reading this blog who aren't women living in Oregon, I might need to explain why I feel so ashamed and heartbroken after completing the Herculean task of giving my 30-week preemie twins nearly nine months of breastmilk. You see, in Oregon, and particularly in Portland, a mother who fails at breastfeeding or — God forbid — doesn't even try, is a monstrous person who hates her babies and doesn't care if they succeed.

In fact, a therapist I talked to (yes, OK, my therapist) said that she's seeing a lot of women who feel extreme shame and guilt over their inability to breastfeed. She said that in the 1950s and 1960s women were literally told that breastmilk was bad for babies, and while it's good that the pendulum has swung the other direction, formula is not The Great Evil.

I think I'll go a step further and say breastfeeding might actually be BAD for some women in certain circumstances. That's right. I said it. Breastfeeding — when you take into account the stress and obsession and the inability to be away from your babies or a pump for more than a few hours ever — might actually be worse than formula feeding. One thing's for sure, it probably wasn't a good idea for that mother in North Dakota who was arrested for breastfeeding her 6-week-old while completely drunk.

Who knows what that particular woman's motivations were, but I do think that the competition around breastfeeding is too intense. On a popular breastfeeding site, kellymom.com, you are simply not allowed to suggest on their forums that breastfeeding might not be the best choice for someone. Even though breastfeeding is a monumental task that requires lots of support in order to succeed, I think we need to be wary of letting our encouragement turn into a guilt trip.

Of course, this could all just be sour grapes. I wanted to be that woman who exclusively breastfed her kids for at least 12 months — giving them all of those essential nutrients and body-building brain food that would make them remarkable human beings. More than that, I wanted desperately to make up for my body's inability to gestate my twins for a reasonable amount of time. Maybe I couldn't stave off the contractions in my uterus, but damn it if I wasn't going to extrude life-giving fats and proteins from my breasts.

I even had a running list of reasons to keep going:
Reason No. 48: Top two ingredients in our very expensive specially formulated preemie formula: Nonfat (Cow's) Milk and Corn Syrup Solids.
Reason No. 12: Dozing in bed at 4 a.m. while breastfeeding a snuggly baby instead of waking up completely to make a bottle in the cold kitchen.
Reason No. 59: Breastfeeding is free.

All the pills I took while breastfeeding:
prenatal multivitamin, Vitamin C, lecithin,
fenugreek, probiotics and fish oil.

That last bit is a lie. In order to keep my supply up and ensure that my babies weren't pretending to be full only to scream at me for more food an hour later, I rented a hospital-grade breast pump and an extremely sensitive scale, which I used every day for MONTHS. (I tried to wean myself off of it, during what are now known as The Weeks From Hell when I got a horrifically painful case of mastitis and had to deal with mysteriously cranky babies — well, even more mysteriously cranky than usual.) This is in addition to the lecithin and fenugreek pills and the nipple creams and the $50 pumping kits and all sorts of other things I ended up needing just to fulfill my divine (and natural!) duty to breastfeed.

In the end, the only time it got easy was when, seven months post-partum, I stopped trying. The whole house had come down with a bad cold and after the fog cleared, I thought to myself: "What am I doing? I thought it was supposed to be easy by now. Isn't it time for it to be easy?" So, in exactly that way that I never did before children, I gave up. I gave myself to the end of the week to quit, but I really wanted to stop. That. Very. Day.

That was two months ago. I continued to breastfeed several times a day for a few weeks because — turns out — it often was easier than mixing, washing and sterilizing. But eventually my milk supply did what I knew it would do in the face of such a cavalier attitude: disappear.

Twenty-five ounces a day became 20, became 10 until, the day before I returned my rental pump, I got a measly 3.5 ounces. And perhaps that's the thing I hate most about breastfeeding: that although I should feel proud of every day, every meal, every ounce, there was no finish line to cross, no engraved trophy waiting for me at the end. By its very nature, breastfeeding is something that slowly dries up so that by the end you feel like you failed just a little more each day.

It reminds me of this joke I heard: a lawyer, a doctor and a farmer are talking about what they would do if they won $1 million. The lawyer says he would open his own firm, the doctor says he would open his own clinic, and the farmer? He says: "Well, I reckon I would just keep farming 'til it was all gone."

That's how I think about breastfeeding now: I just kept doing it 'til it was all gone.

Books on Cerebral Palsy that I love

After suggesting books piecemeal to some friends, I realized I should put out a list so everyone can benefit, not just people I know! So, here's a list of books on cerebral palsy that I recommend*:

The Brain that Changes Itself

by Norman Doidge

Every parent of a brain-injured child should read this book — no, scratch that: Anyone with a brain should read this book. It gives uplifting stories about scientists willing to reexamine the mechanical view of the human body and the patients they help to overcome the odds. 

The most important lesson to take from this book is that the human brain is always plastic. It doesn't matter if you're 8 or 80, you can still learn new things and that is because the human brain doesn't stop developing — ever. 

I think often of the story of a boy with CP who didn't receive intensive therapy until age 4 who went on to help his Little League team become All-Stars.

Teaching Motor Skills to Children with Cerebral Palsy

by Sieglinde Martin

When I got this book I said: "Oh! That's why he moves like that," and: "Oh! That's why rolling over is so important." This book tells you what PTs should or would if they had the time and the eloquence to do so. 

The frank truth is that physical therapy once a week is not enough — it has to be incorporated into your everyday life in how you touch and move your child. This book helps you do that and gives you the knowledge to push your therapists for more!

One more wonderful aspect is that it gives a "Roadmap to Independence," including pictures showing children in the various stages that are necessary for developing the skills for walking.

Uncommon Voyage

by Laura Shapiro Kramer

This book was very healing for me in that it was the first account I read of a mother of a child with CP and helped me feel that I wasn't alone. There are so many similarities between Malachi and her son that I have a hard time not expecting Malachi to be exactly the same way when he grows up!
This book also talks a lot about alternative therapies (such as Feldenkrais/ABM, Flexys, homeopathy and Cranial Osteopathy) so it's great for people who are looking for more than what the medical establishment has to offer.
More than any other account I've read since, Kramer was able to give detailed information on how her son moved as he progressed through his development — another fascinating aspect of this book.

You Will Dream New Dreams

by parents of children with special needs

To be honest, I haven't finished reading this book, but I already feel like it should be offered to every parent who discovers their child will have a disability. (Are you listening March of Dimes?) I really wonder how much easier my initial acceptance process would have been if I'd had it.

I often think of Gov. Dick Thornburgh's opening piece in which he says of his brain-injured son that he is proud to show off what he has accomplished instead of ashamed of his deficiencies.

Someone Special, Just Like You

by Tricia Brown and Fran Ortiz

This is a great book that I wish every preschool/elementary school class would read. It has beautiful pictures of children with disabilities doing every day things and the text helps children see what they have in common instead of how they are different. I get choked up every time I read it to my boys.

Children with Cerebral Palsy

by Elaine Gerais

I got this book free from my local chapter of United Cerebral Palsy, so check before you buy to make sure yours doesn't offer it. 

WARNING: Do not read this book from cover to cover! It will make you depressed because the first several chapters are lists of all the horrible things that your child might face as part of this disorder — and for some reason even the relatively benign ones feel much scarier when associated with the label ("omg, you mean he could be constipated??")

But, it is a useful resource to look up terms medical people don't properly explain and it has a few nice chapters on what you can expect home and family life to be like.

*Clicking on the links here will send you to Amazon.com and I will get a small portion of your purchase price. However, I was not asked to review these books and simply offer them as information that has been useful to me.