One Helluva Lesson For Christmas

10:45pm on Christmas Eve and tears were streaming down my face as I helplessly drove around our neighborhood trying to WILL a major store to be open.

Every single emotion leading up to 12/24/2012 at nearly 11pm was pouring out of me. The illness. The pain. The toll on my family. The issues going on in my life unrelated to Lupus, my inability to work, my Aunt being sick, an Aunt I was missing terribly who I lost the year before, other family being too far away…every emotion just exploded and I had to pull over into an empty parking lot to cry.

The lights of the Toys R Us sign in a dark parking lot are depressing as hell when you are the only Mom sitting under them.

Only a few moments before, as my husband and I unpacked the sea of boxes delivered to our door, did I realize the NUMBER ONE gift my daughter asked for was missing. The tracking for said package showed it was ‘in transit’ and ‘should be at your door.’ Yet there was no confirmation it was delivered and no trace of it once it entered the shipping facility on December 12th and was scanned.

The one thing she asked Santa for. The one thing I knew I ordered well in advance and OF COURSE was in one of the gazillion boxes sitting there. Because why would I check? That would be way too smart. This was NOT HAPPENING.

It was also the one thing I totally OVERPAID to get because she wanted a very specific color.

I opened the door to my car and threw up under the Toys R Us sign, which was now turned off. Leading me to believe there was an employee lurking somewhere. And I was entirely prepared to bribe this magic employee with everything in my checking account to let me in to buy a Furby.

A glimmer of hope sprang forth as the puke came out- my brain realizing the lights clicked off means SOMEONE IS THERE but not reaching my stomach in time, which was convinced that after months of shopping online (so as not to setback my recovery) and planning and planning (so as not to overdo it and setback my recovery) I had failed to orchestrate the perfect Christmas for my kids.

Now understand this about my kids and read this with every bit of heart I am going to tell you with: they do not deserve an ounce of whatever God or Goddess I pissed off to turn my life into this series of now comical and always tragic events. The karma or payback or whatever it is that is messing with Aaron and I can not and WILL NOT be bequeathed unto them.

They are too kind. They are too good. They have been through too, too much for small kids.

I would shake hands with the devil himself to ensure they never have to endure another day of the hell chronic illness and hospitals and treatment and surgeries have given me. Sign me up. Send over my soul.

When I realized that toy was missing something in me cracked. And it was not pretty. Life can fuck with me but it will not fuck with my kids. Sure they will have their own experiences that will be successes and failures but it will sure as hell NOT be tied to this life I juggle so they don’t even see the cotton ball and bandage when they walk in the door from school and I have had treatment. I won’t allow it.

Of course there was no employee magically turning on and off lights at the toy store, and I then spent the next 20 minutes driving in a circle around our town crying more but plotting how to GIVE HER that #1 Santa gift without a shred of disappointment.

After a few harebrained ideas I came home, puffy eyed, with a plan where she gets to pick out the color of her toy via her Uncle and Aunt’s gift card – who live on an extremely remote island and can’t possibly find the very rare one she wants – the very moment the stores open. I changed the gift card to read ‘FOR YOUR FURBY’ and shot an email off to my brother and sister-in-law to warn them and then tried like hell to let it go. I had to.

This had to work and it would work because as my son keeps reminding me, ‘Nothing is perfect, ever…and that is a good thing.’

I probably sound insane as you read this. Putting so much stock in a gift from Santa. Wanting everything to be just right when I know it never is. But understand chronic illness is a lifetime of hoping you are doing enough for those you love despite your shortcomings. What I wouldn’t have given to be one of those Moms or Dads who can just go from store to store to store until you find just what you needed on your list and then off you go to another for that other thing.

I’m lucky if I can handle two stores in one day and when I do, don’t expect dinner to be cooked or laundry done or dishes cleaned. There will be take-out and me sniffing shirts before school hoping for a clean pile while nursing swollen ankles and bruises from toes to knee because I dared manage to get groceries and medication on the same day.

Don’t feel sorry for me though, that’s also not the point of this post. This is my life and I am very happy to be LIVING it…I’m throwing this all down in words because I realized that Lupus or no Lupus I wasn’t the only parent or sibling or partner or what not frantic over something this holiday season, knowing FULL WELL we need not be.

Which I could tell was on the tip of both my husband and my father’s tongues as I left the house Monday night but neither dare speak or try and stop me. I was in that non-rational, can not be talked to or reasoned with, get the hell out of my way I will throw a brick through a window and jump through cut glass and sell my body to come home with this fucking toy mode. Know that mode? Been there? Maybe not over a toy but maybe something else? Yeah…you know what I mean.

Of course they were right. Of course I have the most optimistic, sensitive, and sweetest children on the planet who agonized over what they should give each other as siblings so very much it took my son an hour and 27 minutes to pick out three charms. Three charms that he knew his sister would love and that meant something to both of them. Yes, my son spent that long to make sure his sister would be happy and to show his love in charm form to her. And my sweet daughter? Months ago bought her brother a meteorite from a museum she couldn’t afford and has been giving me $1 per week for months to pay me back. Because ‘Mom he just has to have this, it came from space and I can be the one to give him something from space.’

Both frequently checked on the gifts they bought to make sure everything was still in order and when they finally unveiled…well….

Our children just gave each other the gifts they bought for one another. I'm trying not to sob #mykidsrock

…and here I was agonizing and making myself sick over a gift my daughter would receive, just not on the day she expected. She bought the gift card tale with gusto and can’t wait to get the exact one she wants. Her Uncle and Aunt are now heroes (you are welcome) and I am reminded once again that YES life has changed, but life is NOT over. LIFE is not DONE with me and I’m going to still screw up and kick ass and even learn that no matter how much I plan, SHIT STILL HAPPENS. And MOST of it has NOTHING to do with LUPUS! Imagine the hell out of that?!

I need to stop putting so much pressure on myself to ‘make up’ for these imaginary things I swear my kids and husband go through because I am getting an IV all day or because all the pills on the counter scare them. This is now LIFE. For better or for worse- and the guilt needs to leave as do the constant coddling and freak outs because I can’t make that field trip or I can’t volunteer in class or I can’t have that playdate at our house because I’m just too tired today.

It ends now. Before I take what is wonderful about everything that has happened and the bonds growing tighter and the love growing even stronger and I ruin it with trying to make everything ‘perfect.’

Because nothing is perfect. And that really is a good thing. It means we just need to be us, and I need not try to make things happier or more active or anything other than what we can handle and what we WANT to handle and do.

And you know what? I employed that outlook all day and had the best damn Christmas with my family. It was us. It was casual and laid back and odd and silly and surprising and filled with the one thing I know we get right every single time: love. That part has not changed and that part requires me to only be me. Filled with heart for this little family of mine that teaches me more and more every day about what it means to love and what it means to truly be a family.

Happy Holidays to you all. May you love hard and enjoy the pure magic in every moment of life. It won’t ever, ever be perfect, but it sure as hell will be real.


  1. I love this so much. You are kicking ass every second. : )

  2. How can I not with my family and you all as friends?

  3. Love you Erin. Needed to read this. Your kids are amazing. All 3 of you helped me figure out my own internal dilemma. I can only say that sometimes? Missing the moon and landing amidst the stars is a far better end to a day.

  4. What an amazing photo.
    Much love to you and your family Erin.x

  5. Awesome! Nothing easy about that lesson and I wouldn’t be surprised if you end up learning it again and again. I firmly believe that we all have something that can mess up our kids’ worlds (from our perspective) really badly, and we try desperately hard to keep that from happening. For me it’s the fact that we had triplets and 2 have autism. I can (and too often do) slather a huge layer of guilt all over myself and try hard every day to make up for this lifestyle we have to lead that isn’t like everyone else’s. In the end, you have to let go and keep letting go. Thanks for your post – really thought provoking.

  6. Oh, Erin. Of course you know it wasn’t about the Furby. It was about feelings and steroids, lady, and way more of either than anyone ought to have on board. Such is life with chronic illness, and damn if the holidays don’t bring it all to a head.

    You want to hear my Xmas Eve freakout? My oldest wanted Minecraft for the holiday, and I had bought the gifts for the other two months in advance, but Minecraft is freely available online and I didn’t look into whether one had to install it immediately upon purchase/purchase it from the computer on which one planned to use it and figured I’d sneak his laptop out of his room while I wrapped the other gifts, install the game, and wrap the laptop or something. Then my second job screwed up and couldn’t produce my paycheck on payday, or for two days after that, and an auto-payment hit and set off a chain of overdrafts, and MERRY EFFING HO HO HO we were overdrawn and I don’t get paid again until Friday.

    I don’t know if I’m a lesser mom, not on as MUCH prednisone, or both of those things AND just freaking beat-down by life, but I gave up on the plotting and scheming to MAKE IT HAPPEN almost immediately and instead taped a note to the bottom of an empty box that said “OMG A BOX! YOU LUCKY GUY! THIS BOX IS FULL OF 100% AIR*” and then in tiny letters at the bottom “*and by air I mean air that represents MINECRAFT, which will be on your computer when you get back from visiting your dad.” Then I wrapped the box. And it was fine. My kid has a sense of humor, and roared with laughter, and thanked me, and all was good.

    Lately my mantra is “it’ll all be okay in the end, and if it’s not okay, it’s not the end.”

  7. Thank you so, so very much for being able to put into words what I have been feeling the past several years, dragging my two younger sisters and a sick mother through two knee surgeries, being diagnosed with severe fibro at 15 (probably started when I was 10 to 12) and now what looks more and more like lupus now at 23. My mother died of breast cancer in June after fighting it (and beating it multiple times) for almost five years. Christmas has just exhausted me so much, doing all or there w without her and knowing how I disappointed her… I’m so sorry for leaving such a heavy comment but I have felt so … alone for so long now, it’s just such a relief to know that I’m not.

    I found this link from @chronicbabe (I’m from the Chicago area too)
    Thank you both so very, very much.


  8. The post is great and that photo is amazing! What sweet kids.

  9. Perfection is overrated. Being real is way more interesting and entertaining. =)

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