Picture Parade!

I'm not going to apologize (again) for not writing as often as I promised I would.  Instead, I'll give you some photographic peace offerings.

I have an amazingly talented friend who has been taking pictures for us since our wedding.  He's done all of Aidan's photos since his newborn shoot and we are so lucky to know him.  He even manages to make us look presentable - not the easiest task.

Anyway, Kingston came over a couple of weekends ago to take some pictures for our Christmas cards.  Aidan wasn't massively cooperative, and it doesn't exactly look wintery out, but what can you do?  Here are some favorites.

Of course it's Christmastime.  See my snowman socks?

Little Boys + Sticks = True Love

I think this thing has some "outside" on it...

Obligatory "Child-In-Leaves" picture

Explaining the finer points of pinecones

Here Mommy, you can have it...

RUN!

And a gratuitous shot of The Mama, just because she looked pretty that day.

For what it's worth, we did eventually get one for the Christmas card, which I'm not posting here in case you're getting one in the mail (which would require me to address them, stamp them, and mail them - so don't hold your breath).  

Head, Meet Sand

You haven't heard from me much.  Maybe you've been looking for blog updates.  Maybe you've called and I haven't answered.  Maybe you emailed or texted, and I never got back to you.  Please trust me when I tell you that It's not you, it's me.

Things have been really difficult lately.  People ask how we're holding up, and I say we're fine, because that's what I'm supposed to say.  Fine.

Fine.

It's the biggest lie I'll ever tell, and I tell it ten times a day.  Twenty.  Thirty, if I venture out in public.  The conversation goes something like this:

Well-meaning friend/family member/loved one: So, how are you?
Me: We're fine/hanging in there/doing great/pretty darn good/really can't complain/<insert other upbeat yet completely vague response here>
Well-meaning person: That's great!

And then, we all move along with our lives. 

Note a few things about this exchange.
a) I rarely, if ever, reciprocate by asking how you're doing.  It's not (entirely) because I'm a selfish wench.  It's because I'm too busy panicking to remember social graces (see point B below)

b) If you listen carefully, you will likely hear panicky undertones that belie my casual words.  I am obviously neither fine nor hanging in there.  I'm certainly not great.  I really can complain, actually, but once I start I cannot promise that I'll stop, and nobody really wants to hear it.

c) These conversations last roughly 4.2 seconds (though they feel like an eternity to the poor suffering soul (me) in point B above).  The "Well-meaner" wants to get back to their happy-clappy life, and the "Me" wants to exit this terrifying interaction ASAP.  Nobody really wants to be here.  Society demands that we exchange these words, so we do.

d) "How are you" is not actually a question insofar as questions are requests for information.  It is a phrase meant to cue another phrase, in this case, something like "We are great!"  In deference to this fact, I do not complicate these conversations with facts or information related to how we are actually doing.  (Seriously, when's the last time you asked "How are you?" and hoped to hear "Well, my hemorrhoids are acting up, and boy is that anal itching ever bothersome!" - never.)


The thing is though, you have stumbled across MY blog.  I'm not sure how.  Maybe you clicked something accidentally on facebook.  Maybe I slipped a blog business card into a package of gently loved diapers that I swapped with you online.  Maybe another blog linked you to me.  Whatever the case, you're here, and this is where I get to be honest.  Avert your eyes if you're not into that sort of thing, though I do assure you, nobody's pooper is in trouble.  Well, not really.


I am not okay.

Do you know how hard it is to say that?  To type it out for everyone and their mother to see?  Maybe not everyone's mother, but certainly MY mother, who does in fact read this blog (Hi Mommy!) and might (but hopefully doesn't) then feel really bad for not being here (Please don't.  There are way more important places for you to be.).  But it's the truth.  I am not okay.

I am trying really hard to find a job, but I haven't found anything even vaguely promising yet.  Nor have I figured out how to have time to have a job while still getting my son the medical care he *constantly* needs.  But I can't even worry about that part right now, because priority one is that I need a job so that my family can keep this house we worked so hard for.

My family is hurting.  They are there.  I am here.  My CT family has lost an amazing, beautiful member.  Their hearts are broken and mine is too.  Instead of there with them, I am here, working through health issues as usual.  Mine, as usual.  His, as usual.  Knowing where I would rather be, but also knowing that I need to do what's right and responsible for the tiny dictator.  At the same time, my FL family is facing the unthinkable unknown that is Cancer for the first time.  We are all afraid as we hold our breath and wait to see what the prognosis is.  We know that it won't be good.  We just don't know how bad it will be.  I want to be there for Grandma the way she's been there for me ALWAYS, but I can't.  I have to be here.

My phone has been ringing, and I haven't been answering.  Voicemails have been left, and I don't have the heart to even listen to them.  Blog posts sit half-written.  Projects half-started.  I've been selfishly hurting alone, even while I know that my loves ones are hurting too.

I almost don't have enough left to be Aidan's mom.  Almost.  We're pushing forward, preparing for Christmas, planning a birthday, managing an EGID flare, and taking life as it comes.

I am hoping that writing this is enough to at least point me in the direction of reaching back out.  I will answer your emails.  I will call you back.  Don't give up on me yet.  I really need you - all of you.

This Mom's Christmas List

Christmas Approaches!  What's on your list this year?  I'm going to pretend that I don't feel like life's falling apart, and instead, I'll write a post all about me and what I'm lusting after this year.

Mama's wishlist:

Feeding Tube Awareness I <3 A Tubie Hoodie - I want this really badly.  It's too cold out to really sport my I <3 A Tubie T-Shirt while we're out and about, so this is a must-have and I am really hoping that Santa comes through.  My kid hates Santa though, so he might be passing our house by this year.

Kristine's Keepsakes Hand Stamped Washer Necklace - I would totally personalize this, too.  I'd get our birthstones (mine, Tom's, and Aidan's), and have it engraved with "Amor Meae Vitae" - which means "Love of my Life" in Latin, and is engraved on my Wedding Ring.

Sodastream - This isn't happening.  I know this isn't happening.  It won't stop me from wanting one really badly.  I drink so much soda, I keep trying to convince myself/Tom/total strangers that it's actually the economical thing to do.

A Giftcard - I don't have a job, we all know this.  I'd love to be able to shop guiltlessly for myself and/or my baby boy.  Amazon, Babies R Us, it doesn't even matter. 

A really, really nice video monitor - This feels less like a luxury item and more like a necessity for a tubie mom.  I'd love to have a monitor that I can carry around my house so that at any given moment I can be assured that my child hasn't fashioned a noose from his feed set.  Instead, I have a consignment sale find that weighs like 20lbs and is semi-permanently anchored to my bedside table.

Fitbit - I love gadgets.  I'm working on losing weight and getting more active.  This seems like a no-brainer.


If on Christmas morning, I woke up to every single one of these things under our tree, I would trade them all without a moment's hesitation for Sherry to be alive and well again and for grandma to be happy, healthy, and cancer-free. 


On a lighter note - Tom, if you're reading this - buy that sweatshirt, okay?  The necklace would be nice too ;-)

Confessions of a Jealous Mom

Sometimes, it's cathartic to admit to the things that you keep deep down inside.  It keeps you sane, because you know what?  There's no way you're the only one who feels that way.

I confess that I'm jealous that you can bribe your child with a snack and I can't.  In a crowded restaurant, or a grocery store, or on a long car trip - I wish that I could make life easier/better/quieter with a goldfish or a cheerio, but I can't.  I wish that I could stop a tantrum mid-screech with a cookie, but I can't.  Lukewarm (to avoid clumping) neocate just doesn't hold the same appeal to a wayward toddler, and sometimes I can't help but feel like I have nothing he wants.

I confess that I'm jealous that as you head into the second year of parenthood, you no longer have any reason to know (or care about) your child's height and weight to the inch and ounce on a daily basis.  If I'm not worrying that he's too short, I'm concerned that he's gaining too much weight too quickly (I'm not even joking.  My child has always been underweight and I can't tell you how many times I've wondered if he's starting to look "fat" - thank you very much, society).

I confess that I'm jealous that you can find a babysitter that wants to come back more than once, and that you don't have to describe the laundry list of terrible things that *could* happen, including seizures, asthma attacks, and anaphylaxis.  I'm jealous that you don't have to demonstrate how to stick a large needle through your toddler's thigh in case he accidentally eats.

I confess that I'm jealous that you're living the life I thought I would be living.  I'm jealous that I'm so jealous of you.

But you know what I have that you don't have?

This...

Our Hearts are Heavy

I didn't have to be anything to her. 

I'm her ex-husband's daughter with his other ex-wife.

She didn't have to call.  She didn't have to write.  She didn't have to love me, or my brother.  She didn't have to keep in touch, or make sure we knew our younger siblings.  She didn't have to care about us, even when we moved thousands of miles away. 

My mom raised us to believe that "you don't divorce children." Obviously her mom raised her the same way.  Never, ever, did she treat us like anything less than one of her own.  That's just the woman she was.  And that's how it is that, while I have no grandparents, aunts, or uncles on my father's side - I have them on my Stepmom's side.

They are beautiful people - all of them.  Kind and loving.  Accepting.  But nobody more than Sherry.  I won't say that we loved her, because our love didn't stop Saturday morning as she took her last breath.  Our love won't ever stop. 

We love you, Sherry.  You were are the most amazing Stepmom I could have ever asked for, and I am so lucky to have had you in my life.  Aidan is just as proud to be your grandson as you are to be his Grandma - and I won't ever let him forget the time you two spent together.  When he snuggles that absurdly large sock monkey, he will *always* know that Grandma Sherry got it for him - carrying it in on her back, no less.

I wish I had more photos.

I wish we had more visits.

I wish there was more time.

I wish I had better words.

I am holding these memories safely in my heart.  Thank you so much for everything that you shared.  No fight was ever fought harder.  We love you so much.  Rest in peace.

Advocacy

Some time ago, another mother posted a link to an article in one of the Facebook support groups that I frequent.  It was called Advocacy: putting emotion aside.

I enjoyed the read, and did some further reading on the topic online.  So often, we proclaim that we are our child's best (only?) advocate.  But there's more that goes into advocacy than our maternal instincts and fierce hunt for answers.  How effective can you be as an advocate if you are driven by your emotions?

Advocacy is so much more than shouting from the rooftops as loudly as you can.  It's doing your research - finding out who makes the decisions that affect your child and how to connect with those people.  It's also about learning all there is to learn about your child's disorder - not just as it affects him, but also as it affects everyone around him! And once you've done the research, stay organized - binders work well for us - so that you can enter your next discussion armed with all of the information you've collected.

I think the biggest takeaway for me was that successful advocacy for your child requires that you know what your end goal is going to be.  Where do you see your child, and what needs to be done to get him there?  Instead of "My child has X disorder, what are you going to do about it?" - try "My child has X disorder, and needs Y and Z in order to receive an appropriate education."  Knowing what you're asking for at the outset leads to FAR more productive conversations.

It's hard to put the emotions aside when advocating for your child - but taking a calm approach will always pay off in the end.  

What tricks have you learned that have helped you advocate for your child?