Tiny Salutations

Tiny Salutations


Thursday, August 28, 2014

What is it like being a chronically ill mother of a chronically ill child?

Nearly every time that someone hears about our family's situation of illness, they don't really know what to say and the conversation just drops there.  I assume the reason is that no one really understands what it means to deal with illness day in and day out, unless they have been there.  The thing is, although I know they are out there, I have never met anyone else who has been sick with a sick child. 
It is hard to be a chronically ill mother.  It is hard to be the mother of a chronically ill or special needs child.  But I don't think it can get any harder than being a chronically ill mother of a chronically ill child. 
I think most difficult is when you are both going through things at the same time.  It is so tough when we are both sick.  Any mother knows how exhausting it is to take care of a child with a 106F fever.  They are very cranky, don't listen, won't do anything they should and do everything they shouldn't, don't want to communicate and would rather you read minds.  Now make that fever stretch out for a week.  At the same time, you are exhausted from being sick yourself.  You need to sleep badly, and could probably sleep for 40 hours straight if the world stopped for you, but you can't sleep much at all, because you need to make sure your child is breathing, since fevers are the most common time for him to stop breathing in his sleep.  Your body hurts so much that you just can't stand it, but still you need to get to doctor's appointments and therapies.
The world of doctors and specialists is a world all its own.  Between the two of us, we probably have about 10-15 doctors appointments a month.  The most frustrating parts of the medical world are when doctors give you conflicting information and when they don't listen to you.  Both happen a lot.  Just yesterday the children's cardiologist called.  He has an appointment with them next week.  Originally the appointment was made, because the day before his ear tube surgery the anesthesiologist decided he needed cardiac clearance to be able to be under anesthesia.  Well when they called yesterday, they told me that his last echocardiogram showed that he doesn't have a PDA (hole in the heart) anymore, but he still has a PFO (a different hole in the heart).  Well the last explanation of this that I got was that he still had a PDA and no ever even told me about a PFO.  When they ask if I see any symptoms I tell them that he tires easily during play and has to rest often.  They just act like I don't know what I am talking about.  His physical therapist today brought up that he tires easily and that she didn't think it was from weak muscles, but seemed more systemic.  So it is frustrating to try to tease out who is right.  As an advocate for your child and yourself, you learn a lot about medical conditions, but you still have to rely on doctors and accept what they tell you since you don't know enough to know if they are wrong.
Then there are the moments that tear at your heart, because everyone has to deal with this and you can't do anything about it.  Like when your husband is looking at you in a sad strange way and you ask why and he tells you that he just realized that he will probably have to live without you one day.  Or when he looks at your child with love and says that he wishes so much that you could have another.  Or you think of a beautiful dream for your future, but then you realize that there is no way that could happen in your situation. Or when you have to add one more specialist to the list, because one more system is starting to fail.  Or you have to take a dangerous medication that has the potential for terrible side effects, but there is no other option if you want to keep your body running.  Or when your child is too tired to play and has to lay down.  Or he sees another child doing something that he can't and he tries so hard, but just can't do it.  Or you have to explain to him that he can't do some things like other kids, because he has certain issues that make that unsafe while it is safe for other children, but he is only two and can't understand that. Or that you can't give your family a normal life, because being ill prevents you from doing so much.  That your child would not have special needs had he been born to someone else since it is your illness that caused him to be born so small and underdeveloped (I know there is nothing I could have done differently, but the fact that his disabilities are due to me is an undeniable fact of life). Or, the most heart breaking, when you think about the fact that it is real that you might not be there for your child someday when they need you.  What if he hasn't grown out of some of these challenges and needs your help, but God takes you back early? 
And everyone deals with this differently.  Some (more males I have noticed) decide to pretend this is not real.  Some get so stuck on it that they can't finish a conversation with you.  Some treat you like you are crazy.  But most just have no clue what it is like and can't relate to your life and you end up feeling alienated. 
Being ill, facing death, and having to build an acceptable life around so many barriers changes you.  Unexpectedly, it has made me more positive and more grateful.  I see my son and I see a beautiful miracle I have been given.  Every single day, complete with struggles, is one day I almost didn't have with him.  The day he was born, I was told there is a very large chance your son will not live past today and you may not make it either.  You are dying and if he is not born, at only one pound, you will both die.  This is such a huge, life changing conversation, that you will never be the same after.  You can take that change and become trapped or you can rise from the ashes.  I don't really know if you have a choice.  It just happens.  Most days I feel like I have risen from the ashes, but some days it just doesn't feel any better.  Some days I just need the world to turn off around me, because there are just too many things at once.  I have always had an insatiable thirst for freedom and adventure and creativity.  And at those moments I just need to lie on a beach with no thought to medications and therapies and doctors and how to make it on one income and heavy responsibilities and future and just be.  That is not real though, for if I ignore these things it will get worse.  So I just rock out to Pantera's Cemetery Gates as loud as possible and eat Junior Mints.  And cherish the good moments, like reading to my son and watching him accomplish things that he has struggled with and sharing beautiful simple things in nature.
I'm not sure if this really sums up what it is like being a chronically ill mother of a chronically ill child, but I think it gets one step closer to filling the gap.

Tuesday, August 19, 2014

Surgery Postponed

We were supposed to be having my son's ear tube surgery tomorrow morning and I should be crossing my Ts and dotting my Is getting ready for it.  BUT at the last minute, they informed us that the anesthesiologist is requesting clearance from a cardiologist.  There is fear that anesthesia would not be safe if he still has his PDA (small hole in the heart).  So I have been running around trying to get referrals and appointments and an echo in time for his surgery, but we didn't make it so now we have to reschedule everything.  In a way it is a good thing, because I have been wondering about it and why we haven't had any cardiac follow up for the last 2 years.  He does get tired easily and needs to rest often when playing, but I figured it was his weak muscles or maybe his asthma, but it could be his PDA. 
On a positive note, he has successfully used the potty ONCE.  A valiant effort though.
Not that much progress on the tiny house.  I have been finding ways to cut back on the budget and energy consumption.  Some of these things I took for granted that all houses would have, but I guess we don't really need.  Like a refrigerator.  We are vegan so we don't need to be super careful keeping meats and dairy cold.  We just want some things to stay cold out of preference and to keep them fresh longer.  So we are going to use an ice box.  No electricity needed and cheaper.  Another one, and you may think this is weird, is a toilet.  Yes a toilet.  In a this type of house, we won't have sewage hook up.  So I assumed we would get a fancy manufactured composting toilet, which run over $1000.  They look like a toilet, but the waste stays in the bottom and you empty it.  Some of these claim to do the composting inside, but I don't really think that is accurate.  So you have to deal with it one way or another.  So we will have a very nice bucket system.  No, you will not have to sit directly on a bucket, but it will be there will be a bucket below you.  Just some small ways to lessen the impact on our wallet and on the planet. 
Also, I absolutely love downsizing.  I have always loved the feeling of donating huge loads of stuff to Goodwill.  I have sold some stuff, but usually that takes too long for me and I end up donating it.  I hate holding stuff in my house just waiting for it to leave.  Today when L was throwing a tantrum- he refused to nap today, which was no fun for anyone in the evening- I de-stressed by finding things to put in the Goodwill pile.
I also just wanted to give some advice on making bread.  I have been baking all of our family's bread for a few months now.  I have been playing around with the recipe and have just this week finally made a masterpiece.  My bread had been turning out too dense.  I wanted fluffy bread!  So, some tips....
          Use bread flour, not all purpose
          Use milk substitute in place of water- except when softening the yeast
          Use super fresh active yeast and make sure you let it soak in very warm water for a good  amount of time
          Make sure you actually let the bread rise to double- recipes usually say an hour or so to rise, but mine always takes longer, so alas I must wait the extra time to reap the benefit of soft bread
These first ones are of my son and his cousin together.  They got to see each other this weekend, which is always a lot of fun.  You can see how hard he wants to do the things she can (she is only 2 months older), and he gets close, but he is just not strong enough yet.  He falls constantly while they play, and he gets tired and has to rest (but only for a minute!).  He has so much fun with her though.  They danced and chased each other and tried to climb the cat tower (to the dismay of the cat).
The other ones are us on a walk that we do often.  I love the colors and the landscape there.

Turning back on the trail, the face of disappointment

Friday, August 15, 2014

Rain safari, health update, and sentiments

Rain Safari

Wednesday was the first day in quite a while that it was cloudy and rainy, instead of sunny and hot.  This was a welcome change.  Normally, L would have a fever, so staying inside the house in that weather would make perfect sense.  L has been well for so long now though (hallelujah!).... 

Being out in the rain has always been one of my favorite things.  As soon as I could drive, I used to drive to the beach and sit in my car in the rain and just watch and listen to the rain or read.  I prefer hiking in light rain too.  There is something magical about the rain to me.  It is renewing and expansive.  My favorite part is that I have the world to myself.  Everyone else stays inside.  The world is a little different, a little more real and a little more surreal at the same time, in the rain.  And I am the only one experiencing it. 

So L and I went on a "rain safari".  We went exploring, just in our yard, in the rain.  We found lots of beautiful things that wouldn't have seen in the sun.  Here are some pictures...

This last picture is L reading me the letters on the steps into our tiny "house".
(As I type this, he is practically dog piling me to be able to point out the Y in this picture to me.)

Health update
Yesterday was a LONG day of doctor's appointments.  I had an appointment in Bellingham at 8:30 am.  That is early for us to be doing something substantial.  We are always awake that early, but to actually get ready for the day and out of the house... well that stinks.  Then L had an appointment in Seattle at Children's later.  Poor L was in the car seat just about all day.
My kidneys are still showing abnormalities so I am going to a nephrologist.  This may be the beginning of the long journey of lupus nephritis.  So I am keeping mental notes on everyone's habits so that I can be an informed shopper when looking for a kidney in the future.  Just kidding.  Kind of.  (Brother, you are at the top of my list, just so you know).  No, really though, it is not bad yet.  Far from needing a kidney.  This first visit with the nephrologist is more to establish a relationship, since with my health conditions, this is expected to get worse eventually, so if we can be proactive and stay on top of it, maybe all will be well (and you may be off the hook Brother). 
Also I continue to lose weight.  There are mixed feelings there.  I put on more weight than I was comfortable with during pregnancy.  I have been sensitive about being overweight previously due to being debased in the past (while already being underweight).  So I am proud to say I am almost back to pre-pregnancy weight.  An interesting aside is that I look different despite being the same weight, because my body insisted I have birthing hips regardless of the fact I did not use them for birth.  Hmm.  Anyway, I feel happy about being a normal weight, but the down side is that it is due to the fact that I am sick.  My doctors have brought this up recently and told me to stop losing weight.  Well I wasn't particularly trying anyway, but okay.  I will say that if I have to pick something I like about being sick, it would be losing weight. 
L's appointment was to meet the surgeon for his ear tubes.  His surgery is for this Wednesday!  I hope this will fix a lot of issues with development.  Particularly, clear speech and imbalance.  I am not too worried, since it is a simple surgery, but every mother is a little worried anytime their little one is going under anesthesia.  I hope he handles the anesthesia as well as the last surgery. 
Interestingly, I also found out that L's PDA is likely still open.  A PDA is, very simply put, a hole in the heart that is supposed to close right before birth.  That is, if you are born on time.  So he was born with one open and seems to be functioning well with it.  If he continues to have breathing problems or they get worse, we may have to look at closing it.  Dang, I thought we had escaped the idea of heart surgery!  It seems like he is doing well with it and we won't have to worry about it, but these types of things are what plagues the worries of micro-preemie mommies when you are supposed to be relaxing.
Just about every day I see L do something that makes me stop and say "we are doing something right".  Whether it be him picking up his breakfast that he scattered all over the floor, or him reading me letters, or "reading" me a book he memorized, or saying three words in a row clearly.  But I can't quite take the credit for his growth.  When I do things right, I know that it is not something that I came up with, but something that L taught me.  I think that L has taught me more in these short years than I could have ever learned myself in a lifetime.  I believe the smallest things can have the biggest impact.  Obviously, I am a lover of all things small (except ear wigs- blech). 

Sunday, August 10, 2014

County Fair, Health and House updates

Health updates

I will get these out of the way first.

L has now been without an infection for a whole month!  Woohoo!  That is such a huge thing for our family.  He has a consultation scheduled with Children's for his ear surgery next week.  He had a follow up with the eye doctor this week.  His eye surgery is still holding well.  He has blepheritis, which is a swelling of the eye lids, which is most likely from his dairy allergy.  Hopefully this will get better over time with a vegan diet.  It seems like he may have some vision troubles, but it is too hard to tell at this point/age.  Some awesome news is that he has been learning to "read".  By this, I mean, he can recognize/label letters and numbers.  He also is starting to memorize his favorite books, which is super cute. 

I am getting hearing aids.  Yes, you read that right.  I have been hard of hearing for so long that I cope with it well, so most people wouldn't know if I didn't say something.  It is particularly low tones, like men with deeper voices or bass in music, that I can't hear.  I have been feeling so well for weeks, but my body is saying to slow down again.  I am getting very weak, tired, and painful, plus my kidneys have been hurting and lab work is less than perfect.  Time to reel it in a little.  I am so grateful for the weeks I had of feeling a little better though.

House updates

Not that much progress on the home front, because progress requires money, which we are saving, but it is slow going.  We have found where we are potentially going to put our tiny house- Pacific City/Ocean Shores area.  There are lots where it is legal to live in an RV year round there, which is important.  It seems that the majority of tiny house folks have to live sort of secretly so that they don't get kicked off their own land or land they are renting, because it is illegal to live in an RV in most places.  We plan to buy a cheaper lot just off the beach and then save up for a lot right on the ocean.  Can you imagine waking up to the Pacific Ocean every morning?  That would be a dream come true for this marine biologist!

I have redesigned our floor plan.  I tried to make the construction simpler and sturdier.  Since we have never build more than a treehouse, I want to make it as simple as possible.  I also took out the loft to put in only semi-lofted beds.  So about 4 feet off the ground will be our beds, and below we will have libraries (and toy storage for Layne).  Now our house will be one level and not so tall, which will be easier to build and easier to transport.  The couch will stretch the length of the house and our kitchen and bathroom are both small, which is ideal for us.

The County Fair

There are two big occasions in our family every year- pumpkin picking and the county fair.  This week was the county fair.  The last two years I took a break from entering stuff in the fair, since I had my hands full, but this year I entered some again.  I won a Best in Show, two first places, and two second places!  Two were for paintings and two were for photography. 

Some of you may remember I had a very very small art business a few years ago, but didn't have the time to put into it.  I am starting that back up.  I will be selling my photography again!  It is something that I can do when I feel well.

Edit: I do a lot of photography, but over time became much more ill and was unable to create my business. I am legally disabled now.

L is obsessed with farm animals, so he was sort of crazy at the fair.  He was super excited about the pigs, cows, and chickens.  I tried to get some good pictures of him with the animals, but he was a little too crazy to get good ones, so here are some mediocre ones.

First place & Best in Show- top left pregnancy painting
Second place- bottom pregnancy painting

Second place- L in the tulips photo

First place- caterpillar photo

 Petting a baby cow

He was a bit too much for the baby chicks.  He wanted to hold one so badly like the other kids, but was not quite gentle enough.  He really really loved them.

Other summer pictures- hiking, the beach, etc.

L didn't like the feeling of this muddy sand, so we didn't go far.

Sunday, August 3, 2014

Our week and growing up

Our week was full of summer adventures!  Baseball, tall ships, berry picking, and hikes!  There is a flood of pictures to share. 

This week was also a sign that our baby is now a little boy.  Lots of growing up *sigh*.  L moved from a high chair to a booster chair, and we started potty training.  He's in pull ups, and although he hasn't quite figured out what he needs to do on the toilet, he is agreeable.  I feel like potty training is the last step in having a baby.  From there, they just become more and more independent and the kisses and hand-holding wane.  He is already trying to be independent, entering the terrible twos.  Everything is "no" and how far can I push it?  I have a feeling after all the medical stuff he has been forced to cooperate with, he may be a little more difficult through this stage, feeling like he needs a little more control over himself.  We are trying to give him some independence, but two year olds don't have very good judgment and need a little guidance. 

We have taken a break from isolation.  It is an experiment.   Now that his body has been recovered for nearly a month without illness, we will see if he catches anything.  L went to church, in the toddler room with the other kids, today, and we have been in crowds this week.

Enjoy the photos!