Tiny Salutations

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Tuesday, May 26, 2015

Love & Marriage- April's Moment's III



In April I took wedding photos for my little brother.  His family is pretty stinking cute.  I've always been close to my brother.  I had a lot of fun building forts, reading books, telling stories, comforting and pretending with him.  When my mother was pregnant, they didn't know if he was a boy or a girl until he was born.  Everyone said they guessed she would have another girl, but I told everyone that no, I was having a brother.  It was something I wanted so much that I just presented it as a fact.  I love little boys.  The way they play is so much more in line with the way I think and play.

It is not simple to always be head over heels everyday.  That is just not real, but I think that my husband and I are quite happy almost all of the time.  Having a sick child, and being sick, puts a lot of pressure on relationships, and many people struggle to deal with that day to day.  So in honor of marriage, here are some of the things that my husband and I do to stay a happy couple- and a happy family in general. 

1.  Draw funny faces, cartoons, and stick figures.
2.  Make silly songs, noises, stories, and faces.
3.  Make backstories for things like a songs, strangers we see, characters in movies, etc.
4.  Read together so we can talk about the story together
5.  Picnics
6.  Watch silly scary movies
7.  Learn new things together
8.  Make simple traditions
9.  Learn how to talk to each other and listen to each other
10.  Family hugs

People have called us the 'perfect couple', and while I wouldn't say that by any means, I do know that to make our marriage work (and relationships in general, with anyone), we need to be willing to be silly, spend time with each other, and have real and meaningful conversations.

So here are my favorites of my little brother's wedding photos.  The wedding was at the courthouse, but I took pictures in the tulip fields (which by the way had a lot of trouble this year due to the weather).
















And of course, I had to get pictures of Layne in there too!






Tuesday, May 19, 2015

When the ER is not helpful & permission to break the rules


As I alluded to in the last post, I have gotten weaker and things have been a bit more difficult.  It gets better and worse.  I had another weakness "episode" this week.  I am always a bit weak and it is always a bit difficult to walk. At times, I can take a few steps and walk somewhat around the house, although I have a limp that makes me look drunk (since my left leg is too weak to bear weight fully). 

This week though, my weakness "episode", similar to the previous two "episodes", I was much weaker.  I had difficulty breathing, walking, holding myself upright, moving my mouth, and holding my bladder.  I am also having increasing trouble hearing and seeing.  I tried to go to the ER, but it was so busy I had to leave.  We chose the ER that I went to, because they can have access to neurologists, but the hospital itself is terrible.  The area of this ER doesn't have any urgent care clinics, so everyone goes to the ER, even if it is not an actual emergency.  Well, I waited there 3 hours before even seeing triage.  The triage nurse said that I absolutely need to be seen right away, but there were no available beds and it could be several more hours.  I had also been sitting there soaked (I lost control of my bladder remember?) and had not been helped at all to get dry or warm up.  After some more contemplation, we decided to leave.  I would not be able to see a doctor basically until the next morning, waiting with a 3 year old in the waiting room overnight, and then that doctor would not know me, find my situation complicated, and not be able to do anything until they talked to my doctors anyways.  So I decided to go home and sleep, which always helps, and see my own doctor the next day.

{As a side note, I went to this same ER once with my son, who was seriously struggling to breathe and only a year old.  He really needed medical assistance immediately.  We also had to wait over 3 hours before being seen and were just given oxygen to strap onto his face until then.  I kept bugging the nurses to let him see a doctor and they said 'if they thought he would die immediately they would let him', but since he was still alive although obviously struggling he was okay.  Obviously they have never had a baby of their own not breathing.}

So my doctor doesn't really know what to say either.  He is trying, but as a family doctor, it is a little out of his realm of expertise.  He is talking to my other specialists, trying to get an idea of where to go next.  I am getting a specialized MRI, after which, we can figure out what's next.  So far, the best guess is that on top of all of these other diseases, I have MS (multiple sclerosis).  When updating my hearing aids, my audiologist was shocked by how much my hearing had decreased.  My hearing aids had to be reprogrammed, but I still can't understand certain people. Some people just sound garbled and I just can't pick out words easily.  Some of those people happen to be people I love and want to talk to (so don't be offended if I don't want to talk on the phone, it's not you).  It seems that there is a problem affecting my nerves and also something separate with my phosphorus.  My phosphorus is a complete mystery.  I keep quickly losing phosphorus, then suddenly having enough, bouncing back and forth.  So far, we cannot tell where it is going.  My kidneys look like they are doing okay and, at least when testing, not dumping my phosphorus.  Gosh, who knows?

Recently I agreed to make an art project for the Anacortes Arts Festival to spread awareness about marine debris (aka trash in the ocean).  While in this meeting to discuss what they wanted, my phone died.  My husband couldn't get a hold of me (he was out in the parking lots with the little one), and I was taking longer than he expected.  He actually thought I might have died.  This is where we are at right now. (I am however, excited about having a piece in the Anacortes Arts Festival.  It's a pretty big festival.)

These are trying times.  It is tough to accept it when I am a young mother in control of so little of my body.  I want to play with my son.  I want to walk on the beach and teach him all I know about the ocean.  All of the things I looked forward to when he was tucked inside my belly, feeling like I was a superhero and he my sidekick, are not coming to pass.  I have recently asked God for mercy a few times when I felt like I could take no more, to be taken before given too much to handle.  I can handle pain or weakness, but both together feel insurmountable sometimes.

I am still in control of my mind though, so I have to find ways to make things okay.  I went through 10 years of deep depression in the past, and the one thing I have learned is that even when it does not feel like it, I am the only one in control of how I feel.  Even if I don't feel like anything can make me happy (which I am not there currently), I must do things that I like.  It is my responsibility and no one else's to make me happy.  I also learned how to cover the way I feel with a smile in those 10 long years of depression.  I have had people say I don't look that sick (aside from the wheelchair) and that is why.  I don't think I even have control of this upbeat cover, but I don't think I would want to either.  It is good to stay upbeat, whether you feel terrible or not, to keep yourself from falling into a dark place that is hard to climb out from.  I am never dishonest about being ill and talk about it openly, but I just choose (or reflexively) put on a happy face.  I have this place to be honest and open and hopefully to help others in a similar situation to feel less alone.

Part of making myself happy is letting myself break the rules of what a Mom should be.  I am a pretty harsh judge of myself and how well I am parenting.  I cringe inside when we stay inside all day and watch movies.  It is me who can't go out, not my son.  But being with my family is what holds us together and what makes us happy.  So if that means, sitting in bed watching movies, so be it.  It may be for several days, but at some point, I will feel well enough to go outside in the yard, then the woods (on paved trails, which are short in supply, I might add).  So, I would like to give all sick Moms or Moms of sick babies permission to break the rules.  These are rules you set for yourself and when you can, rules you can go back to.  And trust me, I know this is tough and something I am still learning.    

And because photos make me happy, here are some of my family in the yard a little while back....
(For those of you who have been wondering, he is wearing his compression suit here without a shirt on top.)















Such a happy dog!

Tuesday, May 12, 2015

Some days... & April's Big Moments-Part II


I have another mostly photography blog to share with you from when I sort of slacked off in April.  I was a bit tired and a bit blue in April.  I needed a bit of time to sort out how I felt about being in the wheelchair and try to come to terms with the fact that my future probably won't be what I had thought it would.  Before I get to the photography part though, I would like to share a health update.

I had thought that my legs were getting stronger recently.  It seemed that I didn't need my wheelchair that often inside the house, as long as I stayed in the front part of the house (about 300 sqft or so), but still needed it outside of the house.  Last Saturday, I had a little more trouble walking, which escalated into pretty serious difficulty breathing.  I decided not to go to the hospital.  Now most people roll their eyes and wag their fingers when they hear me make these kinds of decisions, but I do have reasons.  I would never take this sort of risk with my son, but I tend to feel a little different about myself for several reasons. I am on chemotherapy, which means that it is harder for me to fight it off if I get the flu from someone else hacking in the waiting room.  It has been a few months we have been trying to find answers, so I doubt anyone will figure it out that night.  Sometimes rest does indeed help.  In the ER, they don't tend to treat you all that nicely unless you are in critical condition.  Mostly though, I'm tired.  It is exhausting to go to the ER.  It takes at least a day, disrupts our family life for about a week (Layne doesn't like the change in routine and reacts accordingly), I get even more doctors appointments, and generally makes life suck.  How many more times am I going to have to call my Dad in the middle of the night to tell him I am seriously ill in the ER?  Considering how often I have serious situations, I would like to only go to the ER if I am in the middle of dying or something new and serious happens.  
Anyways, Sunday I felt a tad better, although still a little harder to walk.  Then, Monday.  Today.  I can't walk on my own again, at all.  I get news that I could be having nerve-related issues in my digestive system and my ears and need to talk to more of my specialists about the potential impact to my eyes and other areas. It has been a bit more difficult to see and hear (in fact, this was very difficult to write, even with my glasses on, which are less than 6 months old).  I had to bring my family in to my weekly blood work session, because last time I could not give a urine sample, because I fell while trying to pee in that dang cup (it takes a bit of balance) and needed my husband to hold me up.  So even with him holding me up, I still manage to pee all over myself.  When we get home, Layne is lying flat out, limbs sprawled, screaming as loud as he can, because we had to wake him up from his nap to bring him inside, while I have fallen in the driveway and can't walk myself inside either, and of course the dog can't get left out, so she runs outside.  Well, my husband is left to try to get all three of us into the house.  He is a one of a kind, I tell you.  Some new neighbors have been looking at us and shaking their heads, recently, not knowing that we do try, a lot, just some things are harder for us- like getting inside the house. So my husband has to scream at our pretty much deaf ancient dog to get her inside the house, while Layne is screaming something unintelligible, and literally dragging me inside, since we cannot get my wheelchair to the front door with me in it.  Finally, we all got inside, but I think it took a lot out of our morale.  Jonathan was worn out from doing all the work; Layne was tired from being woken up from his nap; the dog is always tired from being 17 years old; and I felt like life had beaten us.  I thought, I am 26, can't walk, stand, carry my son into the house, move inside the house at my own will since the wheelchair doesn't fit, get to the bathroom by myself, cook dinner, and I'm covered in pee.  You know when you are where you belong though, when you feel like life has beaten you, and then your whole family crowds around you in a hug and says it's okay.  Even if you don't believe at that moment that it is okay, when a tiny baby voice says it, it's hard to argue.  That little voice tells me between the lines that I have not failed.


So remember that one of a kind guy that I said managed to get us all inside the house?  Another big moment in this past April was our fifth wedding anniversary.  So much has happened in that short time span.  We have had adventures and learned new things.  We made a family jut perfect for us.  We have been through sickness.  We have laughed and cried.  We have built a tiny house.  We have fallen short, and we have exceeded.  We have grown into adults.  I mean, the amount we have aged is beyond the physical amount of time.  I am always amazed when I see what we looked like when we got married compared to now, and even more so compared to when we met nearly 11 years ago.  So are photographs from our anniversary in April.  We were married in the Skagit tulip fields, so we go back there every year.  Layne has come with us every year since we was born, except his first since he was in the NICU.




This may be my favorite family photo




He wanted to kiss all of the flowers...

...and he succeeded in kissing quite a few of them


Aren't these ones neat shaped?

These ones remind me of the Evil Queen in fairy




I am a huge fan of picnics.  Doesn't the sky look awesome? (I always leave my photos unedited, with the exception of rare cropping here and there)







I love this one.  He has come so far- look how much air he has in that jump?  And we thought he may not jump for a few more years.  When they set their minds to it, kids can accomplish a lot of things you didn't expect from them.


Since we got married on Earth Day and for your 5th anniversary the traditional gift is something wood, I gave Jonathan berry bushes (you know, made of living wood) and we all planted them together.