This Week at the Connell's

So I haven't been able to post as much with Alex's mystery issues lately, but life has certainly not slowed down at the Connell house. Last week we added two new members to Alex's care team which has been awesome, he is learning a ton!  It was tough to admit that we needed help when one parent has to be alone with both kiddos, but everyone is safer and less stressed now! Dr. Fetus Face never called me back, so I called a real doctor and got all the blood work ordered that should have been done in the first place. Hopefully we'll get those test results this week!

We Also gave Alex a much needed haircut.  Here's some before and after pictures:

Lyra and Alex have been coloring all over the place, including on each other... I think Lyra wants to be a tattoo artist when she grows up.  She even drew a mustache on her dear brother.

We added some tiny new members to the brood, 10 caterpillars! We purchased one of those butterfly kits at a thrift store and sent off for our caterpillars earlier this summer. They have finally arrived and formed their chrysalises!  Alex loves watching butterflies hatch so we are excited to raise them together as a summer family project.  Once they hatch we will release them in our yard. 

Mommy and Doctor Fetus Face

Sometimes, having a special needs kid is really hard, but you know who seems to like to make it a whole lot harder? Doctors.

Alex and Lyra both go to the same pediatrician office in Denver.  We drive an hour to get there.  We go because they are the only place around that accepts Alex's special medicaid and takes a natural approach.  I'm very much against giving an antibiotic every time you see green snot.  I won't lecture you about why it's extremely dumb and harmful to your health and the health of America in general, because then I won't be able to stop myself.  Antibiotics and medications in general are vital life saving substances, but should only be used when there is genuine need! Anyways, I wanted to go to a well balanced practice that will only whip out the meds when there is real need and they are awesome about that.  I trust them to tell me when it is truly important and they have always done so. This practice is also however, a rotating practice. They have a dozen different pediatricians and you see someone different almost every time.  A few of them are the best doctors I've come across (and that means a lot considering how many Alex has seen). I keep drawing the short straw though, and getting their new very young doctor whom I've started to call Dr. Fetus Face. 

Dr. Fetus Face is very young, he's the new doctor at the practice, has no kids, and has no experience with special needs kids.  He's so freshly born out of med school and lacking in real life experience that he still quotes the textbooks like a bible.  To him if something is not medically necessary, then it is wrong.  Like breastfeeding after 6 months. According to the holy textbooks, it is super vital until 6 months for a baby's health, but after that is mostly just emotionally beneficial, so that means you should quit.  Anyways, that kind of stuff irks me, since the other doctors have the wisdom to know that parenting is about so much more than what is medically necessary.

This week I brought Alex in for an emergency appointment because he is the worst he's even been, for noooooo reason.  He's been VIOLENT and I mean... violent.  He looks horrible.  I can't really explain what's going on beyond the fact that I know something is not right.  Often times when someone with Angelman Syndrome is violent, it means that they are in pain.  I wanted to do a really thorough medical exam and discuss possible tests we could run to get to the bottom of  this hellacious mystery. We got Dr. Fetus Face again.  He was clearly uncomfortable and out of his element.  He had no suggestions and didn't want to run tests on any of mine.  He treated me like a hysterical woman and then left us to sit in an exam room until his lunch break.  It was awesome.  He told me to call Friday morning if nothing changed.  Things are worse.  I called first thing and guess who hasn't called me back? One of the toughest challenges to navigating raising a child with complex medical needs is dealing with all the doctors and their giant egos.  There needs to be a full course in med school dedicated to listening, and another full course dedicated to treating people with developmental disabilities because frankly 8 out of 10 doctors I meet (and I've met so darn many) suck at both of those things so much that they have been unable to treat him properly.  Now it's the weekend again and we have to decide whether we should attempt an ER visit with Alex or just keep watching and waiting.  It's hard to be heard on this mystery illness because Alex can't tell anyone what's wrong.

I will say that the best doctor we've ever had was ironically, the poop doctor. Yep the gastro doc.  He listens, he problem solves, he cures people.  I literally can't say that about a single other doctor, seeing him is a joy, even if we have to talk in depth about poop.   

A Little Artist

Yesterday was one of the best days of my life, as Ryan and I watched little Lyra waddle over to Alex's crayons, and spontaneously start drawing without any prompting.  A few days prior to this adorable incident I let her make a few chicken scratch markings with a pen on my grocery list, and that was all the coaching she needed. She stood there and drew for about 20 minutes, it was amazing.  She loved it!  It had not even occurred to me to try drawing with her yet, probably because Alex couldn't even sit up yet at her age.  She is developing so fast it's blowing my mind.  Yesterday she also mimicked the word MAMA for the first time twice in a row, but we're still waiting for a repeat performance.  It is so much fun watching her grow.

About Rabbits

Sad sad sad.  My bunny problem is gone, but only thanks to a nasty case of feline thievery.  I woke up this morning to find mama rabbits nest all dug up and empty. I thought maaaaybe she just moved them, so I decided to do a little reading about wild rabbits.

Turns out cottontail rabbits can't move their young, so she either did the harsh rodent deed of eating her young herself, or her little pinkies were kidnapped, most likely by a cat.

 Beyond that little nugget of wisdom, did you know that they spend a grand total of 10 minutes per 24 hours taking care of their young? They build nests out in the open in very conspicuous places, stuff them with grass and their own fur, and then give birth about a day later. After that, they nurse their young for 5 minutes at dawn, and 5 minutes at dusk for a couple of weeks.  They spend the rest of their time away from the nest so they won't tip off predators (That might be where this mama rabbit went wrong, she kept checking her nest all day which is weird). Once that insanely vulnerable period of being left alone all day and night passes, TADAH 4-12 baby rabbits pop out of the nest and live for about 18 more months.

I learned that this long period of being left at home alone each day is why so many humans believe they have found an abandoned litter of bunnies. If you find such an adorable little pile of bunnies, leave them be, unless someone ate her,  mom will be back within about 12 hours.  If you find one out of the nest just put it back, the belief that mom will reject babies touched by humans is a myth thank goodness! If your dog or lawn mower accidentally destroys a nest, you can do the same thing, put the babies back and try to put the nest back together if you are able. Baby bunnies with their eyes still closed are almost impossible for humans to keep alive even if they are professionally trained. They have a better shot at survival being left in the ruins of their nest and cared for by mom than if you try to care for them yourself. And finally, if you find a teeny tiny bunny alone but its eyes are open, it's good to go, it doesn't need rehabilitation (unless it's missing a teeny tiny leg or something).

For me the most surprising thing I've learned from all of this, is that bunnies don't hide their nests.  I thought this bunny was insane for putting a nest three feet from my back door in a garden bed it can openly see me working in, but apparently that is par for the course. I must admit that I am a little sad that I won't get to see the wee ones eating my lettuce, but I'm sure I'll have many more opportunities!  Now that I know what a rabbit nest looks like I can see old ones all over the yard.  Apparently they never nest in the same spot twice, so they just dig a new hole each time.  It's like a rabbit Hobbiton out there!

Alex Receives a Religious Gift and I Contemplate Our Family's Beliefs

Recently my mom delivered a very special gift for Alex from a friend of hers who is a truly breathtaking Buddhist painter.  He is returning to his home country of Russia, and came through town before departing. He has never met Alex, in fact, I've never met him in person, only his work, but during their visit he asked my mom about him and his special needs.  Alex's disorder (Angelman Syndrome) is among many things a seizure disorder, and upon hearing that he went and unpacked a small and heavy parcel and said he wanted Alex to have it.  He had gotten it for a little boy in India he had known who suffered from epilepsy, but the boy passed away before he could give it to him.  Inside the wrappings was a truly beautiful Padmasambhava statue. He told my mom that Tibetans credit Padmasambhava with the ability to heal epilepsy. 

This is one attribute of Padmasambhava I had not heard about before, but I suppose it is not surprising considering how much credit he has in the Tibetan Buddhist religion (particularly the school I was raised in Nyingma). Now to put Padmasambhava into context for any readers who aren't familiar with Tibetan Buddhism, he is sort of like the patron saint of Tibetan Buddhism.  He is believed to have been a man, THE man, who brought Buddhism to Tibet, and pacified the obstacles that would have prevented Tibetans from practicing it. He is also believed to have reached enlightenment and is basically like a second Buddha to Tibetans. 

This gift was very interesting and humbling to me because it was the first inclusion in Buddhism that Alex has ever had. Before Alex was born I was a pretty "serious practitioner." AKA did a lot of formal practice and went on religious retreat for more intensive formal practice.  I even went to Naropa, a Buddhist university to study religion in depth. While I was attending Naropa I learned about Alex's diagnosis of Angelman Syndrome.  I started to have a lot of questions about how developmental disabilities fit into the Buddhist community, and no one I asked seemed to have a very well thought out or satisfying answer.  Alex just didn't seem to have a place in my religious community at all.  He would never in a million years be welcomed in an American Buddhist practice or retreat because of his behaviors.  He couldn't even get in the front door of every Buddhist center I've ever been to, due to a general disregard for wheelchair access.  The American Buddhist community is not accessible to people with developmental disabilities, and I didn't know what to do with that information. I still don't. It has been a big challenge for me spiritually. Thus far my solution has been not to attend any Sangha events.  I won't go where Alex can't.

Christianity on the other hand, can be very inclusive of people with disabilities.  It provides a lot of comfort and satisfying answers for many families in the special needs community, and that is one of many reasons I have come to respect it a great deal, but it just isn't completely what I believe. I very much believe in the power of community, and to that end I think that many churches have that down in spades, such as the church my husband works for.  They are completely in line with my beliefs as they reject no one and seek to make their community both immediate and greater, a better and more loving place! 

As for me,  I continue to just try to live by the principles and philosophy that I have come to believe in as a Buddhist. That is the way we intend to raise our children.... Basically Buddhist.  We want them to listen to their hearts, not someone else's. We want them to have the gift of a strong conscience, so that they can do what is the most beneficial for others and themselves, not because they fear what will happen to them if they don't, but because they want to. That is a big one for us, taking orders from a fellow human being about what is right and what is wrong, who is good and who is bad, is a slippery slope.  We aim to teach them that THEIR thoughts lead to THEIR actions, and THEIR actions have consequences, no one can issue a free pass when those consequences cause harm, and nothing is ever black and white. We have to try to do our best all the time, so that this endless wheel of thoughts, actions, and consequences will hopefully spin in a positive direction (until we reach enlightenment of course, LOL). 

Now back to the statue. When Alex received this Padmasambhava statue, I started thinking about him and his place in Buddhism again.  In Tibetan Buddhism having a single teacher to guide your practice is very important.  My teacher Khenchen Palden Sherab Rinpoche passed away a few years ago but his brother has continued to teach in his place. I have been to several teachings here in the Boulder area since Khenchen Palden's death but have not had the same kind of special relationship with them that I did with him. I don't imagine I ever will.

However, I realize now that Alex has really been and will continue to be my Buddhist practice. This isn't because he is a holy person or a saint, he's just a boy who also has special needs, but the experience of caring for him is what is so transformative. He brings out the best and the worst in me, and forces me to examine it each and every day.  For his own safety, he demands a space of constant, vigilant, compassionate, patient, presence.  On retreat in the past I may have wished to cultivate these qualities, but now I have the profound opportunity to practice them every day for the rest of my lifetime.  It's hard, sometimes I feel too small or unprepared to handle the experience of truly living in the moment with Alex.  I want to retreat, day dream, watch TV, eat a cookie... anything to escape just being totally present. When he is aggressive I become so acutely aware of my own anger, and to be honest that doesn't feel very good.  When he is suffering and I can't help him, I have my own inadequacy as his parent jammed right in my face.  If I didn't have Alex I would probably still be completely rejecting those parts of me. I'd push them to the furthest reaches of my mind, but alas he is like a bright light in a mirrored room.  He leaves no corner for me to hide in.  It's vulnerable, raw, and intense, just like he is.  He further teaches me by exemplifying what it is to live in basic joy.  He is so pleased by the smallest non-conceptual things.  To him, play or "fun" is the way water feels on his tongue, or dirt feels in his hand. Despite the many frustrations he has to deal with in his life, he loves to smile and laugh, and insists that everyone else should too.  His heart is full and that inspires me to fill mine. 

Our Garden is a Rabbit Hole

Ryan and I were super pumped to finally be able to garden.  Prior to this year we were confined to container gardening, so this is new and exciting. So far we have two big beds and some giant planters that actually came with the house.  We have a massive slope in our back yard, and since I refuse to water grass in Colorado just on principle, I'd like to scrape the money together to install some tiered beds on that slope. Alas, one day!

Here's some pics of our adorable seedlings, as well as the latest home of one of our many, many, many, neighborhood rabbits.  I just discovered it freshly made this morning. Apparently she wanted a room with a view of her favorite restaurant and she's been hard at work on it all day. We are super bummed about this since she can easily dig her way into the garden bed and we are totally out of money for more elaborate bunny security measures. Though they are the enemy of lettuce these little boogers have at least given us a freakishly healthy lawn.  I don't water it, but they spread their little kibbles of fertilizer all over and reseed the lawn for us all day every day, then they nibble the tips off of every last blade. We're about one bunny away from not needing to mow it! Our neighbors went all out and bunny-proofed their yard and in spite of expensive sprinklers, their grass is far from happy.  I'm just saying mother nature knows a thing or two about gardening.

I'm trying to plant a lot of redundancy into the yard so that some food might be left when they're done, but I think under the circumstances we're going to have to get creative. I'm going to mount some extra shelves we have out in the garage onto our garden shed's exterior and do lots of back-up containers just in case.  There's a chance the bunnies will leave the garden alone since they have ample food already, but only time will tell, this our first time living in a rabbit hole......

Play Kitchen!

As a joint birthday gift this year, Ryan and I decided to get Lyra and Alex a play kitchen.  We are so excited to watch them grow with it.  Right now they are in the "take things out, put things in," phase, but Lyra especially will soon be playing with it in more creative ways and we can't wait to watch.... 

Sustaining

SO in my previous post I mentioned that Ryan and I were redoubling our efforts to be a more sustainable family.  That means so many different things to different folks, so I guess I better explain what it means to us.

As an adolescent my family converted to Buddhism.  I spent a lot of time traveling to hear our Tibetan teachers speak and to go on religious retreat.  It was a huge part of my teen years and development as a person. I'm no longer a formal practitioner (with a special needs kid I never ever go on retreat), but the basic teachings have become central to my values and outlook on life.  I don't believe in shortcuts and carry deep-rooted feelings for taking personal responsibility.  I need to know at the end of the day that I did everything I could to make choices that were the most beneficial and least harmful to everyone and everything around me.  If I didn't it eats away at me like crazy.  I'm still a curmudgeon, but at least I'm a conscientious one.

Of course the first thing that comes to most minds about sustainability, is the idea of "environmental sustainability."  We agree. We want to make sure we are doing everything we can to preserve what's left of this planet.  For us that means not using an air conditioner even though it's often in the 90's here.  It means hanging the laundry to dry whenever possible, not using paper towels (oh yeah, we seriously don't own a single roll of paper towels and haven't for the last four years!), using cloth diapers on little Lyra, and using as little electricity as possible. You get the picture.

 But it's more to us than those basic steps families can take.  It's being healthy and well-rounded.  It's eating well! We're growing our own food and buying local when we can. We cook as much as we possibly can from scratch.  A bag of flour carries your pennies a long way! We walk instead of drive (I walk 3 miles round trip with the kids to make a basic grocery run). Basically sustainability can mean doing things that take a little longer, but make us all healthier in the long run, not just the planet so we see it as worth the time and energy.

Lots of folks these days avoid these kinds of measures because they think they don't have time and or can't afford it. Well for us the third leg of sustainability is in fact financial sustainability. Ryan and I are in the "lower" lower middle class financially, so if doing these things didn't help us pinch pennies we wouldn't be able to do them.  Walking saves gas money, and it keeps away nasty doctor bills as it keeps us healthy. Using less electricity lowers our energy bill and growing food lowers our food bill.

Now time, time is another matter.  Time is something Americans are always running out of. There are never enough hours in the day but we make some sacrifices so that we can do all of these time consuming things.  We get up VERY early, and we drink a lot of coffee.  I also work from home and Ryan works odd hours.  I wanted to be able to be at home to take care of my kids and live more "slowly," so I developed a business model that matched my sustainable principles and made it happen. Obviously as a business owner I have to work a lot, but if I need to water the yard in the middle of the day I can do that as a "lunch break."  That is the best decision I could have made for my family and I feel really fortunate to be able to do that. A big part of making it all work however, is redefining your activities and how you plan for them.  I make my weekly plans around the fact that going to the store is going to take 2 hours.  At first it is inconvenient but after awhile it just becomes a part of your life. I actually enjoy it a lot because I like to be outside!

 Another Leg-up we've had for this lifestyle is our area's infrastructure.  We don't live downtown, but the entire Denver area of Colorado has worked hard to create open space trails, bike lanes, and sidewalks that make leaving the car at home possible.  I hope that the rest of the country starts to create this option for its citizens. 

I've expressed our ideals here, but living sustainably isn't always easy and we fail/make mistakes all the time, but that's life. Overall it is my hope that living this way will teach my children that the quickest, shortest, easiest, way from point A to point B isn't always the best way.  Fast does not = best.  We want them to relish life not sprint through it (at the cost of their own health and the planet's), and that's what we're attempting to do ourselves!