I was formulating a post in my head around midday Sunday of this past weekend.  And the super abridged version of what it was going to say went a bit like this:  I think my days of traveling overnight we the girl, are done.  Its just too difficult.  She has gained 10 pounds in the last year.  Grown 4 inches.  Changing diapers on the go and putting her on the portable potty, in the car, is difficult. Sitting on the aforementioned potty while the car is in motion, during long car rides to feed her her food or gtube feed her is extremely difficult.  Not to mention, a tad bit dangerous.  Eating out in restaurants due to her sensory issues is difficult.  Putting her to sleep in a hotel, is, yep, you guessed it, difficult.  It all, can be so, so very, very difficult.  And although I am not one to be known to shy away from difficulty, I think I am going to opt out.  Take the path of least resistance and forego family weekends to soccer tournaments or anything similar.  My husband can do the guy thing, take the boys on these weekends and me and the wee one, can hang back at home and yeah, I am out.

So that was the long and short of what I had in my head.  Post didn’t happen because around about time I was formulating it all in my head, I received a message from a friend, letting me know that a dear friend of hers, a fellow blogger and a mom who I had met once myself, had unexpectedly lost her beautiful daughter the night before.  Just like that.  Basically no warning.  One day, your child has what appears to be a simple cold.  A run of the mill virus and then, with no rhyme or reason, gone.  But here’s the thing.  If you are parent to a complicated and fragile child, no cold is simple and no virus is run of the mill.  Colds, viruses, and fevers can go south quickly.  Seemingly simple colds and viruses can kick up seizure activity.  They can bring about a whole host of other things that to the typical population, would be managed and gone in no time.  Not with our children.

And just as I was trying to process that heartbreaking news, more crappy news arrived on it’s heels.  Our good friends, Bill and Victoria, mom and dad to the amazing Gwendolyn, posted that after being admitted to PICU late last week, after roller coaster days and nights, the difficult decision to intubate Gwendolyn, had been made. Devastated.  I was completely devastated for them.  For sweet G.

Seems like my reality checks often comes at the expense of others.  I am certain there have been times when my own family has served as the reality check for people as well.  But I hate that it has to go down that way.  That the pause we take in our busy and hectic and yes, some of our difficult lives, comes in some of these heart wrenching moments.  I just hate it.

So while I am able, I am going to go on those weekends.  And be grateful that at the age of  nearly 7, I can still put her in the backpack.  That when I can’t bring her wheelchair along, that she still fits in the stroller.  That despite all the difficulty, the planning, the adapting environments and altering the norm and comfort and security I feel when I manage her at home, despite it all, I will just keeping moving.  I have been told many times over the years, “I just don’t know how you do it.”.  I have never much cared for that statement.  I am sure is was meant as some form of a compliment but honestly, what should I have done and what should I continue to do?  Curl up in a ball.  Not get out of bed on some days.  Drink heavily.  Give up.  I know people do.  I just can’t.  So we do what we do, because honestly, to most of us living in the trenches, there is no other way.  What a disservice and dishonor to our children, all of our children, typical and otherwise, the giving in and giving up would be.

Surrendering sounds appealing sometimes.  Easier to look for the open door.  The escape route.  But because the runaway scenario is not based in reality, surrender comes in other forms.  Surrender comes instead in our quiet and still moments.  when we are all alone.

Suck it up buttercup, is what I told myself after the events of the last few days. And suck it up I will.  Pray, if that is something you do.  Pray and send love and light to two families who sure could use it right now.  I know that they would truly appreciate it.

I have been using those three words a lot lately.  I think I will adopt it as my mantra in this, my 50th year.

I posted on FB and Instagram the other day, about having to give up contacts and return to wearing glasses.  I said that “my vanity” and I have to part ways with the contacts and actually, I think I may have misused the word “vanity”.  Which is not unusual for me.  The misuse of a word thing.  You see, I don’t think I am vain, as vain is defined:  ”having or showing an excessively high opinion of one’s appearance, abilities, or worth.”

I think for me its the opposite in many ways.  I actually lack a high opinion of myself.  I am often my own worse enemy and where my appearance is concerned, I was once accused by my oldest of have a body dysmorphic issue.  Of course she doesn’t think, or at least I don’t think she thinks, that I have that nifty disorder but it is the consensus of all that perhaps what I see when I look in the mirror may be different from what others see.  Maybe.  Hard to say.  I like to be right so I may just stick with my version.  However, I will acknowledge that after wearing contacts for 30 plus years, I am less than thrilled to be returning to glasses.  I might have thrown a little hissy fit for about 5 minutes.  Okay. Maybe a day or so before I came to my senses and realized I’d like to keep my corneas intact for the next 30 years.  But to understand my hang up with the glasses you need to understand where the insecurity started to begin with.

I started wearing glasses in second grade.  I was made fun of from the get go.  Being called “four eyes” was a daily occurrence.  I had a sister that wore glasses as well but that really didn’t help.  None of my friends wore glasses and as the years passed and I found that I enjoyed and excelled at sports, glasses became the bane of my existence.  As my vision worsened, there was no chance of going without them.  As it stands today, I need to put on my glasses to even step out of bed.  My parents rule back then was no contacts until high school   So I endured the taunting and envied the pretty girls and tried to be fashionable with some rose tinted lenses at one point.  Shall we look at how that worked out for me?

There is SO much to talk about when it comes to this photo, isn’t there?  Circa 1976.  As noted by the macramé choker.  I was 12.  Awkward age as it was.  I had, and you will be shocked by this, I had a very bad perm.  Another one of my hang ups back then was the fact that my 4 other siblings had beautiful curly hair, which was commented on all the time and me, my hair was stick straight.  Which was commented on all the time.  My brother often told me I was adopted and from time to time I went looking for evidence by rifling through my parents personal papers.  True story.  Will you please bring your attention to the bang area?  For some reason, I thought a few curls or fake curls as it were, had grown out and were oddly hanging on my forehead and I thought cutting them might be a good idea.  Not so much.  7th grade was hell.  Dog barking and the nickname “fro” were added to “four eyes” and yeah, not things that exactly boosts ones self esteem.

Highschool could not come soon enough.  And when it came, and contacts were brought on board, a new found confidence emerged as well.  I never, ever felt pretty, but I felt, for the first time, at the very least, average looking.  And that was good enough.

This picture, my high school graduation picture in 1982, was, I can honestly say, probably the last photograph I liked of myself.  And there lies the reason  you will find very few photos of me.  I just do not do pictures.  Jessica’s wedding was mandatory and let me tell you, a source of stress for me.  I know, I know, even you all are telling me to get over myself at this point.  I get it.  I really do.

And now, the glasses I loathed, are back.

I am stocking up.  Hoping with a variety to choose from that it might ease the sting of it all.  I chose to buy from a company by the name of Warby Parker.  In conjunction with their partnership with the non-profit Visionspring, Warby Parker pledges to donate a pair of glasses for every pair purchased, in a effort to provide glasses to someone who otherwise could not afford them.  Pretty cool, uh?

I must practice what I preach when it comes to gratitude in ones life, even despite circumstance, and I must start by acknowledging that I am extremely grateful that I have vision that can be corrected.  I have a little love who’s stroke has left her with partial vision in one eye and peripheral vision loss in the other.  Neither which can ever be corrected.  I am fortunate to have a wonderful ophthalmologist who is stubborn, much like myself and she is adamant in finding answers and solutions so my corneas can be as healthy as possible.  Those two reasons for gratitude are enough to keep me in check and help me to keep the whining to a minimal.

Slowly but surely, I think finally, just maybe, I am beginning to get over myself.  About time.  A couple dozen years in the making.

Well, ” have problems” is a given. Let’s just start with that. Acknowledge it. And move on.

It appears to be, after blogging elsewhere for over 5 years and then taking a 6 months hiatus, I have decided to return to writing. Well, I use that term “writing”, loosely as I hardly call what I do writing. Venting, purging, sharing. Maybe those things. But hardly a writer am I. What will you find here in this new space of mine you ask? What makes  ”here” rather than “there” different?

By the way, did you happen to  notice how many times I have placed things in “quotations” already? Not sure what is up with that.

Anyway, let’s start with what may perhaps be the same. For sure, straight out of the gate, my posts will be filled with a crap load of grammatical errors. Just the fact that I had to google the word “grammatical” because I thought it was “grammarical”, should tell you something! I will misspell, Even with spell check. I will place far too many unnecessary commas in sentences. I will hardly ever use the proper spaces between said sentences and the list goes on and on and on.  I am nothing if not consistent. So if those things bother you, this is really not the place for you.

This blog, will more than likely, have a ton of posts having to do with raising a child with multiple disabilities. And although I have a plethora of other children, as evident from my header picture, our lives, right or wrong, center around the life of a tiny but fierce little fighter girl. It does not mean I love her any more than my other children but if you have a child that is 100% dependent on you for their survival, that child will become the axis by which your world spins. Just the truth. And that is not a bad thing. In fact, here is a quote from my other blog that tells you how I feel about her entrance into my life:

“Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have got it
you may be smart enough to see
it is what you would have wanted
had you known….
~ Garrison Keillor

What might be different here? Well first of all, more than likely, not a whole lot of pictures and details about my other children and their families. Unless I clear it with them first. You see, part of the reason I left blogging over “there” was that people can be so freaking cruel sometimes and I just had to stop putting my family out there as easy targets for mean people. It just was not fair to those that I love the most.

I am going to try and also lighting up the mood here a bit. Let’s face it, those 5 years years kinda sucked sometimes. I could not, for the life of me, dodge the hard and heavy posts. Not an easy task as we navigated through catastrophic seizure disorders,  7 months of leukemia treatment, the loss of too many of our little buddies from cancer, the wreckage left by a stroke, the sudden death of a parent and the heartbreaking loss of a precious grandchild. No way to sugar coat that stuff. And all of that, the journey through some unimaginable times, has made me who I am today. Better in some ways. And not so much in others. Sharing of what I learned or what I am still grappling with, might be of value to others newly traveling one of those roads. Or not. Hard to say. But it has only been through all of my sorrow, that I am able to embrace the abundant joy. So I’ll try to let joy predominantly shine.

I will also try to keep it real here. As real and as transparent as I can when I am opening myself up to the masses. One thing I want to touch on is what life is like as I stand on the cusp of 50.  Yep, the big 5-0. Boy did that come quickly. I want to find humor in the absurd, and share it, for humor has been one of  only a few things that has seen me through the last 7 years. It is sometimes dark humor. Humor that only some will understand. but I have been grateful for it, as well as grateful for a family who has to remind me from time to time to laugh and loosen up a bit.

And so we come to the other two things that have sustained me through some of my darkest days, and that has been hope and faith. Those two words mean so much to me that I have them permanently inked on me. Proudly inked on me. I have a deep belief that this place here is just a stopping ground, a station until we reach where we are meant to be. And I have great hope, that one day all the questions that I have struggled with, because of all that I have seen and experienced, that one day I have hope I will have those answers. Or actually, I have hope that the answers won’t really matter anymore.

So there it is. If you want to stay, welcome. I am so glad to have you here. Feel free to introduce yourself. Ask a question. Play nice and be kind in the comment section and yeah, still learning my way around this new venue. Be patient with me. As I like to say, as with many areas of my life,  I am a continual work in progress.

Best get progressing though cuz as I said, almost 50. Yikes.