Where’s My Village?

I went to a mom’s support group a couple weeks ago.  The topic of discussion was “Finding Your Village.”  The older Max gets the stronger I believe in the fact that “it takes a village to raise a child.”  It’s hard, though, when you have a child with special needs, to build that village.  I’m sure it’s hard for every mother, but if your child has special needs there are other aspects to consider.

I’ve had plenty of offers.  I think people understand that caring for Max is difficult and draining, and so they want to help.  They say “hey, if you want to go out and get your hair cut, or have some acupuncture, etc. I can watch Max for you!” And I really appreciate that!  The problem is, it’s not that easy.  Max needs to eat every 4 hours, and with his pump feedings it usually takes around an hour and a half.  So anyone who’s going to be watching him for an extended time (even for a short time if it’s not planned right) will need to be trained on feeding via g-tube.  If he’s really fussy he will swallow air as he is eating and then he’ll need to burp during his feeding.  Since he is unable to burp through his mouth due to his fundoplication, he will gag and wretch and sometimes choke until you insert a tube to release the pressure in his tummy.  This is very traumatic to most people – we’re just used to it

Then there’s the stuff every baby deals with of  just not being used to someone new.  A lot of kids have a hard time being left with a stranger, and Max is no different.  This is a good thing.  It shows that he has developed attachments, and I am very thankful for this.  But when Max gets fussy he gets very stiff and tight.  He arches his back so that he is very difficult to hold on to.  So any potential baby sitter needs to be prepared to deal with this and know that it’s not abnormal for him.

Max also needs someone who can be on seizure watch.  And this is difficult because we can’t tell people: “this is what his seizures look like…”  because we don’t know.  We’ve never caught them on EEG.  He makes various movements that look like seizures, but many of them were proven to be CP related rather than seizure activity.  However, we still need to be on the lookout for seizures so we know if his medications need to change.

Taking care of Max requires a certain amount of training and experience.  And some people think that they can handle it, but I bet the training would scare them off.  My sister offered to watch Max so my husband and I could go out for Valentine’s Day.  So I went over to her house one day and demonstrated how to use the feeding tube.  My in-laws ended up watching Max when we went out for various reasons unrelated to my sister’s willingness, but later she told me that she didn’t think she could handle having a child with Max’s special needs.  I think most volunteers would feel the same.

The grandmothers are wonderful.  They have both spent a lot of time with Max and I – watching me take care of Max and taking care of Max while I’m watching.  And I couldn’t have made it this far in his life without them.  Our night nurse is another valued member of our “village.”  It took Max a couple of nights to get used to him, but they get along quiet well now.

The problem is, when you only have three or four people you can call, there’s a decent chance none of them will be available at some point.  And what do you do when that time comes when you haven’t gotten any sleep all weekend and the time that your child finally nods off is the time when you also reach the point of starvation and by the time you finish eating, your child has woken up again?  Who do you call when your house is such a mess that you can’t stand to be there anymore?  That is my dilemma.  Plenty of friends, but not quite sure if they’re “good enough” friends.  Will they be able to handle us at our worst?

I wish I had a handful of good friends who have older children with special needs.  Or a few CNA or Nurse friends would be nice too.  Someone who I can call without much notice who can take over just long enough to give me time to breathe.  I’m sure much of my problem is self-afflicted.  I need to learn to “let go” just like any other mother and trust someone else to take care of my child.  Really, the chances of something significantly life threatening happening is very slim.  I just need to keep reminding myself of that.

Anyone have any insights for me?  How did you learn to “let go” and trust someone else with your child?  How did you build that village of people to support you and help with the care of your child?

My Morning as a Model

As I mentioned last week, I was honored to be involved in a photo shoot for my local breastfeeding coalition.  It was so much fun!  As you can see, Max pulled out his adorable tears for the occasion, so we got a lot of fun comforting shots.  My husband went along mostly just to watch the shoot, but I was really glad that they included him in some of the photos.  His support is a big reason that I’m still able to pump for Max, and he deserves some credit for that.

Looking over the photos this week (and seeing some of the other photos of moms from the shoot) got me thinking a lot about why I do what I do.  Why I keep on pumping even though my son will never be able to suckle at the breast.  The biggest reason I do it is because I know that it is the best possible nourishment for him.  Over and over I hear doctors and therapists say, “if he gets sick, it’s going to hit him harder than other kids” or “it’s just going to take him longer to get over colds and things.”  But really, he has done very well.  He is at risk for aspiration, and repeatedly gets a strider in his throat after coughing, but he has never had pneumonia.  He has gotten a few colds this winter (all kids do), but they weren’t bad and he recovered well.  Is it because of the extra antibodies that he gets from his milk?  I don’t know, but I gaurentee it doesn’t hurt.  I don’t want him to be prescribed antibiotics over and over because I want him to build his immune system.  I don’t want to be building antibiotic resistant strains of bacteria.

The next biggest reason I keep at it, I think, is because I don’t think of it as the huge inconvenience that so many people seem to think of it as.  I am an introvert who craves her alone time.  In my hectic life of doctors and therapists, tube feedings and medicine times, pumping gives me a perfect opportunity to pause, pull out a book, check my e-mail, or just think.  I don’t sigh and whine about how much I hate pumping or think about all the other things I could be doing.  I just do it.  When I was first pumping in the NICU after Max was born, I thought three months seemed like an eternity to pump for.  But as my husband predicted, I just got used to it.  For the first few months I kept at it because I really believed that he would heal to be able to breastfeed when he was a bit older.  As I slowly realized how unlikely that was, I had already developed a habit.  Sure I complain about it every now and then.  It’s not like I love to do it all the time.  But it’s a part of my life now, and it’s going to be weird to stop.

The final reason I’ve kept up pumping for nine months is because I always believed breastfeeding was worth fighting for.  I don’t mean to sound to judgmental here (although I know I will sound somewhat judgmental), but even before my son was born I knew that I would work as hard as necessary to make breastfeeding work for us.  I keep hearing about moms who say that breastfeeding just didn’t work for them, or they intended to breastfeed but this or that happened.  And I can’t help but wonder, how hard did you try?  If your milk is slow to come in, what’s wrong with formula feeding while you pump to encourage milk development?  Did you call a lactation consultant or a La Leche League leader?  We don’t live in the village culture anymore, so we don’t have mom and grandma there to teach you how to nurse  your children.  It doesn’t come naturally anymore.  We’ve socialized it out of our culture.  And if you want to make it work, you need to have support.

I was really exited to be a part of this photo shoot because I wanted to help the world to see that breastfeeding is worth working for.  I’m sure many mothers would quit pumping if their child had a permanent gastronomy tube placed.  And I think doctors expect them to.  I feel like an alien sometimes when I tell Max’s doctors that he is receiving x mL’s of expressed breastmilk fortified with x amount of formula.  For nine months not one of them has asked me how it’s going or how long I’m planning on continuing, or has really talked to me about it at all.  I figure if anyone really needs that real, natural nutrition its my son.  It’s those kids who probably aren’t able to breastfeed for some reason.  Babies with kidney failure, those undergoing cancer treatments and babies with genetic syndromes requiring tube feedings.  I want mothers to see that it can be done.  I want them to be supported.  I am a part of a great Natural Parenting of the Child with Special Needs group on Facebook.  They put me in touch with an Exclusive Pumping yahoo group geared towards moms who aren’t able to breastfeed for various reasons.  The women in these groups have been an amazing source of support for me.

I understand that breastfeeding is a highly personal issue because it involves the mother’s own body.  Women don’t want to feel pressured to breastfeed or pump because they associate it with their freedom and flexibility.  But that is ignoring all the benefits.   The amazing feeling you get when you give your child a part of your own body.  In special needs cases, the ability to do something for your child.  Your milk is so nourishing for them.  I think that pumping for my son has made me feel much more ownership of his care.  He is my son, and I know what he needs:  mama milk.

Without trying to sound too judgmental, I beg you, for your child’s sake, please work to make breastfeeding work for you.  Seek out your local La Leche League for support.  If you are breastfeeding and aren’t able to relax and enjoy it please get some support.  Don’t just do it out of guilt or drudgery.  It can be an amazing experience for both of you.  My dream is for every mother and baby to have an enjoyable breastfeeding experience.

That’s my soapbox, I’m getting down now.  I just wanted to get the word out that it is possible.  My family has a history of low milk supply, yet my son has  some great chubb.  It took work, but it’s possible.

Sleep strike!

For the past two weeks, Max has been on a sleep strike.  Just in time for me to come down with a serious sinus infection- complete with sinus pain and swollen glands all over one side of my face- and start a nursing assistant course.  My husband, wonderful man that he is, was kind enough to make sure I got full nights of sleep (9 pm to 6 am) the end of last week and through the weekend.  The goal was to fight off the infection as much as possible before my class started last monday.  So while I slept, he was awake trying to keep baby as comfortable as possible, feeding every 4 hours, giving massages, etc.  Then when morning came I would take over and he would sleep until noon.

It was not at all an ideal situation.  The child literally slept for 2 hours at night and 2 hours during the day.  And this became common for nearly two weeks.  Four hours out of 24!  Now luckily my mother was generous enough to come and stay with us for a few days during my first week of class – we couldn’t have handled it without her!  But seriously!  4 hours in 24?  How can a baby survive on that?  I have heard that kids with epilepsy don’t sleep well.  I’ve been told that babies with neurological damage have a hard time getting days and nights straight.  And it makes sense that his cerebral palsy and spacticity would make it hard for him to relax and fall asleep.  But even with our holding, rocking, and massage he wasn’t able to sleep more than 4 hours!

While reading for my CNA class, I came upon a table listing the average sleep requirements according to age.  Infants one month to one year were said to require 12 to 14 hours a day.  Even if he only slept a few hours at a time, my husband I should be able to get some good sleep if he was sleeping 12-14 hours a day.  But my major concern is not myself.  I can hire a nurse, or call one of the grandmothers or another friend if I’m really in a desperate state.  My primary concern is Max.  How is this affecting his development?  his brain growth?

The main reason babies require so much sleep is because they are doing so much development.  Their brains are growing a lot and they are learning a ton of new skills.  Of course they’re exhausted!  Max isn’t learning many new skills, so maybe he doesn’t need quite as much sleep as other babies his age.  But I’m concerned about his brain growth.  Is his lack of sleep inhibiting his brain growth, or is his brain not growing so he doesn’t feel the need to sleep?  And that thought makes me more curious:  is he too exhausted to learn any new skills?  is his lack of sleep actually hindering his development?

As of now I’m putting off talking to the doctor about it.  I usually avoid the doctor at all costs – we have so many appointments to juggle I can hardly find time for unscheduled visits (and most of the time when I go it end’s up being something they can do nothing about).  I guess I will have to talk to the doctor about it at the next visit, but for now I’m just looking forward to the overnight nurse starting next week!

Breastfeeding and Tube feeding

This morning Max and I posed for a photo shoot for the local chapter of the breastfeeding coalition.  Hooked Max up to his pump and me up to my pump and photographed the whole process.  I was so excited to be a part of this.  I really wanted to raise awareness of tube fed babies and also to encourage mom’s who are tube feeding to keep pumping.  Breastmilk is hands-down the best food you can give your baby and it’s worth working for.  We all make sacrifices for our children, this is probably one of the most noble.  Having a tube fed baby doesn’t mean you have to formula feed.  I’ll post some pictures when I can get my hands on them!

Thanks for Trying, but…

After Max’s birth, my husband and I were bombarded with stories of miraculous healing.  Stories of kids who had very rough beginnings then caught up quickly to be “normal” by age two or three.  Other friends and family members would tell me that they were praying for miraculous healing for Max.  They were praying that he would be perfectly “normal.”  Don’t get me wrong, I understand the sentiment.  I appreciate these people trying to give me hope and encouragement.  But my son isn’t like all those other kids – just like all those other kids weren’t like each other.

I get really frustrated when people tell me stories of miraculous healing. I think it’s because it’s just so easy for other people to tell nice stories and pray big prayers.  But the fact is.  Raising Max isn’t easy, it never was.  People don’t know what to say or do so they tell me this story they heard that will make me feel better because they lived happily every after.  And if it doesn’t end up happily ever after for me they will just sneak out of my life because they probably can’t handle all the drama.  Don’t get me wrong, I’m sure if I were on the other side of the situation, I wouldn’t know what to say either.  And I’m pretty sure I still wouldn’t know what to say to someone in my situation.  But it is hard for me to take all the easy hopefulness around me especially when most of the people who are the most “hopeful” have no idea what taking care of Max is like.  It’s all well and good for some friend of my parents to pray that Max will heal to perfectly normal, but I’m busy hoping he’ll smile at me one day.  Or sit up on his own.  That he won’t need a ventilator again.  Being perfect isn’t important to me.  There are so many other things that I hope for.

Max needs to be celebrated for what he is and for what he has accomplished.  He survived a very traumatic birth.  That really is miracle in and of itself.  His immune system works great.  His lungs, heart and other major organs are doing well.  I recently listened to a talk by Amiee Mullins about disability and the many negative connotations we have with the term that supposed to be “politically correct.”  I much prefer the attitude Kevin Kling shared on APM’s “On Being”.  Instead of disability meaning unable and focusing on what can’t be done, he points out that the prefix dis- is associated with the underworld – the place of shadow and reflection.  He says that disability doesn’t mean inability, but rather “able through the world of shadow and reflection,” and “having a foot in both worlds.”

This idea makes a lot of sense to me.  I will never understand my son on a certain level.  I will never fully know what he’s experiencing, because he’s experiencing life through that world that I can’t be a part of.  He’s misunderstood because he’s between two worlds, not because he lacks ability.  I struggle to think of him in this way.  I worry about people staring at him, being disgusted by him, and making fun of him.  When I focus on that its very discouraging.  When I try to focus on the idea that he is between two worlds that is more encouraging to me than a child turning out perfectly normal.   Again, this is very difficult, but I’m willing to work at it.  I believe it’s important for him to be celebrated rather than pitied.  His abilities embraced rather than changed.

As long as I’m living, my baby you’ll be.

I’ll love you forever,
I’ll like you for always.
As long as I’m living,
My baby you’ll be.

– Love you forever by Robert Munsch

I judged a speech contest this past weekend.  Storytelling was the category.  And as I heard this familiar story told yet again.  It took on a new meaning for me.  I know I will never see my son move into his own home and have his own children or take care of me when I’m older as the mother in this story.  But as I heard the phrase, “as long as I’m living, my baby you’ll be.” yet again.  I was brought back to the hospital where we awaited Max’s MRI results at four months of age.

The hospital’s neurologist came in and explained that he had cerebral atrophy.  This is a shrinking of the brain also found in Alzheimer’s patients.  The doctor explained that his brain may continue to shrink, or it may stay the same size.  It is unlikely that it will grow much.  A couple months later we met with Max’s neurologist to discuss the MRI in more detail.  She stated too that his brain may grow a little, but not much.  “He’ll be a baby all his life.”  I know that doctors tend to give the worst case scenario so that you don’t get your hopes up.  I understand that as a baby his brain is very plastic and could do a lot of healing.  Even so this news was hard for me to swallow.  I’ve never been a big baby person.  I’m no good with them…always afraid of breaking them and such.  What I always looked forward to in having children was the toddler years.  The years when you can really interact with them and see their personalities develop. Now I was facing a future of raising a perpetual baby.  This was not at all what I had in mind.

After Max’s birth I was consumed with feelings of inadequacy.  “I can’t raise a disabled child!  I’m the worst possible parent for this child.”  I had no experience with disabled people.  During the last month of my pregnancy my prenatal yoga instructor had reassured us with the proverb that “nature never gives you more than you can handle,”  and I clung to that knowing that I couldn’t handle a child with special needs and so I wouldn’t have one.  I guess nature had a different opinion on that subject.  And honestly, as hard as it is, I love my baby.  Do I wish that he was “normal?” Yes.  Do I wonder what he would have been without the injury?  All the time.  But I’m his mother, I can’t help but love him.  And I haven’t given up hope.  Sure I have my hopeless days (most often following sleepless nights).  Other days, though, I know that he’ll surprise all of his doctors.   And nature was right, I can handle this – not that it’s ever easy – but I can handle it.  As much as I still grieve for what’s lost – my baby who was perfect until he traversed down the birth canal – I’m amazed at the love that overflows my heart.  I’m happy for the growth that the experience has born in my own life.

Saving Money; Saving Time…a difficult balance

It’s been a difficult year for our family.  When I found out I was pregnant, before I had announced anything, I was informed that my salary was being cut.  It’s not like it was a huge financial setback, but with a baby coming, I did get a little bit stressed out.  We began packing as much money away as we could.  After I quit work, my husband (who works a seasonal grounds-keeping job) began to put in long hours to contribute to the baby fund.

Then Max was born and he was in the hospital for a month.  My husband couldn’t bear to be away for more than a couple of days.  So that was a significant decrease in income all the while chipping away at our savings eating out and paying for lodging.

When Max came home things didn’t improve much.  He didn’t sleep well at night, he ate every three hours.  I also needed to pump every three hours and cleaning all his feeding equipment took extra time too.  I was constantly overwhelmed.  I felt like this baby needed two full-time caretakers, so my husband ended up taking a lot of time off to help out with the feeding and caring for baby.

Well, now my husband is in his off-season and while it’s great to have another full-time caretaker, it’s tough not having money coming in.  We’ve blown through all of our stockpiled savings as well as various Christmas gifts.  So hear I am trying to figure out how to get by.  I’ve read various blogs and websites on how to save money on food (food is our major expense – for the most part the rest we can live without – we just love good food!).  The problem is all of these “save money” solutions take time.

• Buy produce in bulk and can and or freeze what you don’t use.
• Start a garden
• Make your own instead of buying pre-made (dried beans vs. canned, stocks, granola and granola bars)
• Cook instead of eating out
• Couponing

Pretty much I feel great if I have time to cook a meal.  I don’t know, maybe I’m just terribly unorganized and if I could get my act together I could be a super mom like Modern Alternative Mama.  But really, she doesn’t have to spend an hour out of every four feeding her baby.  With an extra half hour pumping on top of that.  She doesn’t have doctors appointments every two weeks and therapy visits two times a week.  And I’m sure she doesn’t spend 4-6 hours of her nighttime awake with a fussy baby.  Not on a daily basis at least.

Is there a way for our family to continue to consume the good quality food that keeps us feeling great, while taking care of a child with special needs and taking time to nourish ourselves as parents?  Is there a way for us to stay in the black while eating healthy and giving our son the medical care and therapy that will give him the best chance to thrive?  I assume at some point I will figure out how to balance time savings and money savings.  Maybe (hopefully?) it’s just a phase and once Max gets a little older he won’t be as much work.  In the meantime, I’m overwhelmed, I’m tired, but I love my baby.  And I will find a way.

Go to sleep little babe…

Sleep has been a hot commodity around our home since my son’s birth.  The first night home from the hospital I swear he barely slept a wink.  I was all set to soothe him to sleep.  We had two rocking chairs, I’d been working on my lullabies, and I had made a wrap that I could wear him in as I walked around to lull him to sleep.  Nothing worked.  Looking back, I guess we should have known that.  NICU babies have a hard time sleeping at night because in the hospital things are going on round the clock.

In time the sleeping got better.  Then at about three months it started deteriorating.  It wasn’t bad at first.  Max would go to sleep around 8pm and then wake around 1am and proceed to fuss and cry for 2-3 hours.  I could bounce and sway him to keep him from fussing, but he wouldn’t go to sleep.  The minute I laid him down he would fuss and arch again.  But after a couple hours, he was out like a light.  Before long, Max’s sleeping had deteriorated to:  sleep three hours, awake until 6 or 7am, take long naps all day.

Every two or three weeks he had a good night.  We tried all kinds of things to remedy what we thought might be causing the problem.  Each time Max had a good night we got our hopes up thinking that we had finally figured out the problem!  Within a day or two we realized we were wrong.  We took him off of the continuous feeding pump that fed him over 8 hours and did gravity-flow feedings every three hours.  We tried feeding over an hour with the pump to give him a consistent flow of food.  The worst was the weekend my husband was out of town for work, my mom was babysitting my nephews, and my in-laws were at a conference in Florida.  I was all on my own and Max wouldn’t sleep a wink.  Friday night he was awake for 10 hours straight, and Saturday night for 12.  On Sunday, after not sleeping all night, I couldn’t get him to sleep for more than an hour and a half at a time.  I was at the end of my rope.  I took him to the doctor first thing Monday morning.  He still couldn’t diagnose the problem.

A couple more weeks of poor sleep went by, all the while he was vomiting (via his feeding tube, because his surgery – fundoplication – prevents him from vomiting naturally) during or immediately after nearly every feeding.  Everyone (doctors, nurses, other mothers, etc) kept telling me: “some babies spit up, some babies spit up a lot.”  One day his “spit up” was a yellow liquid.  Now I to this day don’t know what that was, maybe it was just some nasal drainage he had swallowed, but to me it was the straw that broke the camel’s back.  I called the doctor immediately where I was treated like an over-reacting mother. “He just has a cold,” she said.  My husband was out of town and I cried to him on the phone.  Papa bear kicked in.  The next day we had switched to a new pediatrician and had an appointment for a gastric emptying survey.  Turns out his stomach muscle wasn’t moving.  We were literally pumping him full of food every three hours.  No wonder he couldn’t sleep.

I was told that this is common of kids who have fundoplication surgery because it manipulates the stomach muscle.  Why wasn’t I told about this before the surgery?  Why wasn’t I given any options in the situation.  I wished my son could eat on his own and determine for him self when he was full.  I know it was all to protect him from pneumonia, but it is just such an unnatural system!  Max began taking another medication to stimulate his stomach muscle.  As a bonus, it also knocked him out at night…or so they said.  We fiddled around with the dose to get it just right, and we were in business.  Max was gaining again.  But still not sleeping.

Again we tried everything we could think of.  Probiotics, breast milk fortified with formula, formula made with partially digested proteins, quitting probiotics, dairy-free breast milk.  He had good nights here and there but over all still not sleeping nearly as much as a baby his age should.  Even as he was taking three medications with excessive sleepiness as the primary side effect.  Co-sleeping allows me to rest at least while Max is in REM sleep.  I wouldn’t survive without it.

Even today we get our hopes up.  Two days in a row of great sleep!  We thought we were in the clear.  The third night?  Crash and burn…awake for 8 hours.  If all else fails I guess I can sleep when I’m dead.

Giving up the Natural

Max came home from the hospital August 10th.  We couldn’t wait to get him into cloth diapers.  I spent much of my time pumping to provide the most natural nutrition for my unnatural son.  So far he was only on one medication.  I had a feeling that wouldn’t last.

I was always excited about being a mother.  The community I’d been introduced to through my midwife had gotten me excited about natural parenting.  Babywearing, breastfeeding, cloth diapering, attachment parenting with no “crying it out.”  Now here I was in a completely unnatural position.  Natural went out the window as soon as my son took the ambulance to the children’s hospital. He wouldn’t have survived “naturally.” He couldn’t breastfeed because of a swallowing dysfunction and an oral aversion.  His tone dysfunction (pre-cerebral palsy) made him fuss and arch his back out of every baby carrier I tried.  And he cried inconsolably at night.  He never cried it out and got over it, but sometimes we did have to just let him cry.  Nothing we did really helped.

It got better after awhile.  He would still sleep in the baby carriers, so I could take him out to the grocery store and such.  And soon I found one that held him in the cradle position which kept him from arching his back – he still prefers it to the car seat and the stroller.  He started sleeping better at night for about a month.

It was nothing like what I’d envisioned or wanted, but we clung to what we could to keep things natural.  My mom friends constantly asked me “how can you do cloth diaper with everything else you have to do?” and “how can you keep pumping all the time?”  These are the things that I can do.  The parts of my parenting philosophy that I don’t have to give up.