Summer Boredom Hits….

My daughter hasn’t gotten out of her owl PJ’s since Monday.

My son hasn’t brushed his hair since Tuesday.

My Goddaughter has binge watched three shows on Netflix.

Yup, we’ve hit that part of summer where it’s not quite time to go back to school, but everyone is a bit bored. I’m in treatment, leaving them at home and me hooked to an IV.

So I’m devising a plan to get everyone OUT of the house and active lest the first day of school arrives and everyone begins to whine that we did nothing and went nowhere.

First of all, if they say we did nothing and went nowhere…they are big ‘ol liars. We were in Michigan for the start of the summer, where the kids took a side trip to West Virginia. The girls and I went up north to San Jose…and…ummm…we’ve done a ton of swimming in the pool.

Ok so the cross country trips were family oriented because of illnesses and very sad goodbyes, not exactly ‘vacations’… in fact the Michigan trip was such a blur to me and filled with so much emotion I don’t remember a lot of it unless reminded. It was hard. Certainly not a vacation, even if the kids were mostly shielded from it all and had some fun.

The San Jose trip was fun, but there were several incidents along the way (allergic reactions, car sickness, and my grandfather passing away) that pretty much shot that as a ‘real’ vacation as well.

So I’m putting in media requests for Disneyland and Universal Studios – and we’re looking at a trip to the Santa Barbara Zoo. ANYTHING to make it seem like we’ve had a ‘vacation’ this summer. I have some points I might be able to use for a hotel. Maybe we can find a suite, bring the dog, and hit the beach and everything. Who knows.

Kids in pjs

And these kids really need to get the heck out of their PJs.

Wish me luck. BTW I wish beaches rented scooters and they were all lined with cabanas. Adding my illness to the mix makes all of these things even more challenging but if there’s a will…there’s a way.

My Grandpa

Sigh.

To say it’s been the ‘summer of change’ could be the largest understatement ever around here. So much has happened in EVERY corner of our lives that I feel an upheaval like never before in my life.

As we drove to San Jose, a week ago today, I learned my beloved grandfather passed away.

It was one of those moments I knew had been coming for the past decade, it seems…yet I was almost unable to process it as I stared at the open road ahead.

I don’t have many words yet to describe how all of this is making me feel. I can say, in all honesty, my Grandfather has only wanted to be with my Grandmother since the second she passed away when I was a little girl. So I’m taking comfort in knowing he is now with my Grandmother. At least I like to pretend that’s where they are, regardless of my beliefs.

So I’m going to just pretend for awhile longer, because all of the reality heaped on us this summer is too much. Good or bad news, it’s all just too much.

Grandpa & Me

Now’s Normal

Caregiving isn’t easy.

I watched my parents take in my Grandfather years ago. Things changed dramatically.

I watched my Mom care for my father. Things changed dramatically.

I watched my cousins and uncle care for my aunt. Things changed dramatically.

I watch my husband care for me. Things continue to change dramatically.

Chronic illness has many different side effects. But I swear the very worst may be what it does to everyone around the person who is chronically ill. It’s not just the sick person who’s life changes. It is everyone in their family. It is everyone they know. And it’s not a ripple effect…it’s a tidal wave. The kind that pulls everyone put to sea and everyone has to work hard to paddle back to shore.

Sadly, not all make it to the sand.

Of course this adds to the stress of illness.I worry less about my own health and worry more about my family. You don’t want to be a burden and you don’t want their lives to changes, however everyone’s lives change dramatically.

My therapist calls it the ‘new’ normal. I loathe the term. Mainly because I don’t want a ‘new’ normal. I want my old normal back. I want everything the way it was before. Of course that’s impossible, however my goal is to at least get as close as I can to what life used to be like. Becoming healthy enough to return to work, to walk a theme park, to be able to take the kids wherever they need to go and actually participate in any activity a normal parent could engage in- from a walking field trip to just helping in a classroom, filled with all those kid germs.

I want to meet my husband for drinks after work, go out on the town. Attend a concert.

So many things that I could go ahead and do now but would require a ton of planning and accommodations for the ‘just in case’ scenarios that come with chronic illness.

In fact, later this week I’ll be attending BlogHer ’14 in San Jose- but I will have to very carefully plan my days and evenings. The drive alone will be tiring, and I won’t be able to medicate myself until we arrive. Then I will be attending an event at 3pm- which means I will most likely be exhausted and absolutely need rest- rendering any evening actives null and void. Then depending on how tired I am when I awake, we’ll see what we can do. But odds are it won’t be much.

When I think about this ‘new’ normal I do get a bit upset for all those times I never considered how lucky I truly was to not have to be able to worry about a thing- to travel at a moment’s notice and not have to worry about making sure I was rested, making sure all of my medications were packed and ready…making sure I hadn’t just been released from the hospital for the 4th time this year. However I’ve learned over the years to not get angry.

I’m not in control of this disease, all I can control are my habits. So my new normal has meant pool exercise. Eating well. And making sure I’m on top of all my medication.

Of course just when I can see a difference and FEEL a difference, I get thrown a curve by ball an urgent care doctor who is adamant I be sent to the hospital for migraine symptoms that could be a mini stroke. It’s times like these I feel like I’ve failed my family and myself. What did I do wrong? What should I have done after getting a classic migraine, like I’ve been getting since puberty…especially headed to treatment where I knew I might get a little queasy?

Apparently spend the night in the hospital just to be sure all was well.

Sigh

Every test came back fine…minus my cholesterol which is now high, apparently. Oh, and my potassium which was low, apparently. But the MRI, the CT, the PT, OT, Speech Therapist…all fine fine fine.

So with nothing you can do, you sit in a hospital bed and try not to worry or be upset and accept the ‘new’ normal that disrupts everyone’s lives. The husband that once again has to take off time from work to help you. The kids who will once again act out in some way because Mom was back in the hospital.

If I could make a deal with the devil to rid my life of this…I would. But not for me, all I did was lay in a bed and injected with good drugs. I would, however, take this away from all those around me.

Now I know full well I would go to the ends of the earth for my husband and kids. For my entire family. I’d let them disrupt every day if they had a ‘new’ normal we couldn’t control. It is a no brainer. I just want to acknowledge everything they go through for me…I love them beyond words.

And I hope we settle into this NOW normal and eventually just think of it as normal, with or without Satan.

My Daughter’s Digital Duel, I Vote DISLIKE

Digital parenting can #suckit.

As many of you know, both of my kids are rather plugged in. I mean…PLUGGED IN. They game, they blog, they game, they do their homework online, they game, they watch tv online, they do EVERYTHING on their iPads or computers. So it should come as zero surprise that any discipline in this house tends to be a direct ‘take away’ of said plugged-in-ed-ness.

My 9-year old plays Animal Jam. She chats. She makes videos. She trades. All of these things are done under my watchful eye-I check her chats, I watch her videos, she tells me about her trades. I hear all the drama when someone makes a bad trade. I hear all the drama when someone wants to make a video and records her and her friends. Up until now we haven’t had a single issue.

Notice I said… until now.

The other day said 9-year old came down the stairs in tears and hysterical. She made a friend on Animal Jam she thought she could trust. He asked if he could borrow her rare spike collar to make a video. She agreed. He took the spike and bolted. She reported him, drama ensued. She asked if I could ask for help from Animal Jam support.

No problem.

H and abucka

I dutifully sent my Motherly email and asked them to check out her story and his and hopefully get her item back. If not, lesson learned. In the meantime he was blocked from her den and her chats so he couldn’t bother her any longer.

Or so I thought.

She unblocked him without me knowing and attempted to retrieve her spike herself. Continuing the drama with him calling names and her demanding her item. Yup. This is what goes on in the digital 9-year old world. HIGH DRAMA.

I found out by accident, as she casually mentioned in a Skype chat with her girlfriend that he was calling her names. Busted. So I wrote another email to Animal Jam support apologizing for my daughter having unblocked the alleged thief and taking matters into her own hands, when we had clearly handed it over to their authority. And then grounded her from the game for a week.

You’d think I’d have killed a gazillion kittens and bunnies. There was door slamming and tears. There was moping. There is currently, next to me, many sighs of boredom.

We’ve been very careful about allowing the kids their own digital spaces without invading their privacy, but also making sure they are in safe places online and are only exposed to what we feel they can handle. But I have to admit, the kids are both playing in worlds that are essentially Second Life or online playdates. With that comes real life disputes and real life hurt feelings and real life everything.

Of course we had a very long talk about her online habits. Trusting someone she had only met the day before (believe me, I worked the Frozen angle on that one into the ground) and making videos about other players, respecting privacy, and informing parents of any activity that isn’t right.

I suppose something like this could just as easily happen in the bike-riding, come home when the street lights turn on, childhoods of our past. The boy down the street might have asked to borrow her shiny, rare, Garbage Pail Kid card to make a video and promise to give it back after. Then runs off into his house and shuts the doors and pulls the window shades. I mean…I suppose that could happen. And I suppose this Mom would have then gotten on the phone with his Mom where she needed to investigate if he committed the accusations. Then I suppose my daughter could have snuck out to go see said boy and fight with him again to get her card back. That’s all very childhood and kid-like….right? Right?

Ugh. All I know is I’m exhausted from having moderated her first digital feud and our first digital foul. And her first digital grounding.

Who knew grounding a kid from an online world could be just as devastating as grounding them from real life?

 

Just One More

I’m back at the place I started.

My Aunt and Uncle live closest to the airport and have plenty of room…and the kids and I are again occupying the downstairs, but this time my Mom is upstairs in the room I was meant to sleep in when we arrived over ten days ago. Two weeks? Twelve days? I’ve lost count.

The nights ran into days, the days into nights and too many things happened to even write about.

I came here to allow my kids a chance to run around the family mountain in West Virginia while I helped my Mom help the rest of my family deal with my ailing Aunt. I knew she rushed here quickly to be by her side, but I think for those first 24 hours or so we all had some hope.

I moved from relative to relative’s home, while the kids spent time with their grandparents, and just did as I was told. Mostly what I was told entailed being near my Mom, or cousins. Running errands that seemed like half an errand to keep me busy and half an errand to keep me out of the way and mostly just giving all of us something to do while we waited and watched and wondered.

The kids and I left California on June 16th. I handed them off to their grandmother at the airport we flew into on June 17th. On June 20th, after telling my Aunt I was really enjoying spending time with my God-daughter, and then going about feeling useless near the kitchen as we tried to keep things tidy…I watched as my Mom forcefully asked family friends to leave quickly out the back door and my Uncle rushed to  his wife’s side. Her daughters already next to her, her grandchildren having just left moments before, as if she knew they were too young and it would be too much to see her pass. There was so much movement, yet…barely any. A controlled chaos where all you could hear were hearts breaking and tears falling.

The rest is a blur. I know it’s June 27th and this morning we entered my grandfather’s nursing home, not far from where I’m typing this, and my son said hello and then wanted to leave the room. My Mom took him out in the hall and they sat on a couch. My daughter, loud and brave, sang “Let it Go” to my 96-year-old grandfather and he smiled and attempted to conduct her with his frail hand. He clapped when she finished. I held her and thanked her and escorted her out to my Mom waiting in the hall.

My brother and I talked to our grandfather and he proudly showed one of the aid’s my photo with President Obama that he has displayed in what seems like poster type size on his bulletin board, next to which is a photo of my two kids, the ones still a bit uncomfortable in the hallway. I dug through my purse as I wanted to show him I carry the locket he gave my grandmother everywhere I go…always in my purse.

At first he didn’t recognize it, then you could see the lightbulb go off.

She brings you luck, doesn’t she?

Yes, Grandpa, she does.

Earlier, I had given all I could emotionally after one night at the funeral home, then had to spend a day in bed from pure stress induced exhaustion/migraine, and then came the day that included the funeral mass and wake. On this day I broke my grandfather’s rule of no kisses (he’s afraid he’ll give me germs) and kissed him goodbye and told him I loved him and went into the hall while my brother talked to him a bit more.

Knowing what it took to get my body healthy enough to handle this trip to be there for my Mom and my brother and my family and for myself, and seeing the way my grandfather looked as we entered the room, sleeping. I knew I had said my goodbye for the last time.

I put on my sunglasses in the front of the car, kids playing with each other in the way back of the car and paying no attention to me. Again the tears streaming down my face as they had for a straight week. My Mom somehow always with tissue in her purse. No matter how good of a mother I think I am, and how prepared I think I may be, there’s my Mom with even more tissue because no matter how much I searched through my own purse I couldn’t find the pack I knew I had in there.

Somewhere in there we had driven to Toledo to pick up the kids after sitting in traffic dazed, unmoving, phones constantly buzzing and ringing with arrangements to be made and my Mom’s help needed. Somewhere in there I offered to take communion at mass so my cousin didn’t have to worry which row would walk up first. Somewhere in there I hugged childhood friends and college friends and family friends I’ve known since I was born. Somewhere in there I had to remind the kids not to worry if they saw Nana or their Uncle cry every once in awhile. Somewhere in there I called my husband wishing he were closer so I could just collapse in his arms. Somewhere in there I called my doctor and explained that unless he thought it was detrimental to my health I needed to stay where I was to be with my family. Somewhere in there I felt as though I was entirely useless, as no one wanted to worry about my health in the midst of all this, so I was never given a job or anything to do, I was just simply there. Somewhere in there I stood on a dock and watched fireworks, both kids in my arms, as we “ooooh’d” and “aaaaaah’d” while they boomed overhead and over the river. Somewhere in there we managed to get the kids Red Wings, Michigan State, and Tigers t-shirts and Coney Island loose hamburgers and Vernor’s floats. Somewhere in there I told them it really was fish fly season, the mythical time of summer I had told them about their entire lives, yet we still haven’t seen one so they may never believe me. Somewhere in there my entire childhood and adolescence flashed before me and my heart broke over and over again because nothing will ever be the same for anyone I love.

Now we will get back on a plane and go back to our lives. I’ll resume treatment and the kids will continue their summer vacation. However things will need to change.

I said goodbye to two people I love this week and I can’t do it again. I am tired of so many of those thoughts where we  think of someone yet don’t pick up the phone. Where we are reminded of a fun time yet fail to email those involved just to re-live the good times had by all. I refuse to be a slave to these tears and everything  I want to say, I’m saying it. Everyone who I  love will know it and hopefully feel my love.

My eyes swollen, my heart heavy, I leave with suitcases full, my mind still jumbled, and my thoughts all over this state in which I no longer live, but provides me with memories and heartache and family. A combination you can not take for granted and you must remember to honor or it will sneak up on you and steal your most precious memories and leaving you wanting, wishing for just one more.

 

 

 

When Faced With Memories

I’m in Michigan but not on vacation.

All the memories keep flooding back in waves and then are gone as quick as they came.

I feel fragmented. Pieces of me in California and West Virginia and at 9 Mile and Harper and in a living room on Yankee Rd.

All the reasons I left. All the reasons I love. All the reasons to come back. All the reasons to not look back. All the reasons a chunk of me will never feel at home anywhere else. All the reasons ‘…where the heart is…’ truly IS.

Pink peonies

I must have spent 20 minutes staring at these puffy, pale pink peonies wondering why they made my stomach do flip-flops. Thinking it was because I heard my cousin say they are one of my Aunt’s favorites. But knowing in my gut that wasn’t exactly right. Picturing them somewhere, but unable to place the ‘where.’

…and they had those huge ants on them, remember?

Just like that I was 10 and I could see them, with a huge, black carpenter ant crawling out from one of the petals. I could hear the slam of the back, screen door. They grew against my childhood home with that color and those ants visible even more against the red brick.

I wanted to be there again. To close the top of the sliver gate so the dog wouldn’t get out and to move my hand just so to avoid getting my fingers smashed as metal hit metal. I can hear the back door open and slam behind me and can see the back of my Mom’s head as she washes dishes and I fly past her and into my room.

The rainbow border looking down on me as I hit play on my favorite, totally worn out cassette and flopped on my stomach as the water in my bed sloshed around. The accordion door shut behind me, letting in just enough light and all of the noise of the house.

The phone ringing and not seconds later hearing the door slam shut again and listening to my Mom talk to my Aunt on the phone while listening to my cousin fill-in-the-blanks of the conversation simultaneously in person. She didn’t get her whole story out as quickly as my Aunt could call it in…my Mom mediating as always. The door slams shut again and I hear … yes, she’s on her way back…ok call me later or I’ll be over after dinner.

It would take only a minute to walk across the street to my Aunt’s house but you could make it in 14 seconds if you were running fast enough. Her side door was harder to open. Heavier. So it wouldn’t slam shut but almost slowly close and click itself locked behind you. Both of those doors had screens so you could easily yell inside instead of actually going inside.

But ours had the peonies with the big black ants.

Father’s Day 2014

My Dad is one of the reasons I am the way I am. Everyone says we’re a lot alike, and I can’t disagree.

From the earliest memories I have he would tell me ‘You do not need a man, you don’t need to get married, and you should always be independent’- in fact he said it so much when I made my Confirmation in 8th grade my special trait on my rock that we painted said ‘INDEPENDENT’ …

Then I met Aaron and thought for sure they wouldn’t want me to live with a boy – at least not yet, after a very violent and horrible relationship they helped me get out of. My Mom was skeptical… a story Aaron loves telling because she was so mean to him the first time they met. (Imagine my Mom being mean to anyone…it’s sort of funny) and I met my Dad on Amelia Island while he was away on business and stayed with him …with the intention of telling him I wanted to live with this boy and we were going to move in together and I really hoped he wouldn’t be mad.

Not only was he not mad, he told me I would marry him one day. And that he knew this was the right man for me. I was stunned. I had my Dad’s blessing and Aaron had his respect. When Aaron moved to California to take his first VFX job we broke up for a bit and I was devastated. I knew this was the man I was supposed to spend my life with and if this wasn’t ‘it’ then I have no idea what was. My Dad, as I cried and cried, said ‘stop being so upset, he’s going to marry you- mark my words’ … and sure enough he was right.
….
Then, year later, after the wedding and after life…we welcomed a son and Aaron went from being the guy who never wanted kids to being the most amazing father ever. Seriously. He’s the guy who should have had 20 kids because he’s just THAT GOOD with kids. A few more years later and we welcomed a daughter. Which scared the hell out of him, but he took it in stride, knowing full well he’d protect her and teach her how to handle boys like the teenageHIM.

Hala's gift to Dad
Our daughter’s gift to Aaron today…a snuggle blanket for the two of them

Jack's gift to Dad
Our son’s gift…a video game controller organizer so they can have even MORE game time together

I am so thankful every single day that I have a husband who isn’t just a father, he’s a damn good father. He might have to work his ass off daily to make sure we can eat and have a place to live and can afford nice things, but the moments and time he has with his children he’s like SuperDad. He makes them feel like they can do and be anything, while teaching them all he knows. Even if it’s something as simple as grilling a good piece of meat. He isn’t afraid to snuggle them and tell them stories of his childhood and all the things they should try and do and all the things they CAN do. They look at him with wonder and awe and they should. He’s their play friend, their disciplinarian when need be (but luckily not often) and their #1 hero.

He may not think he is, but I know two kids who find him to be the most amazing man on earth. They talk about him to their friends, they brag about THEIR Dad. And when other kids come over to play they giggle and laugh because he’s even awesome with their friends.

He adores his nieces and nephew. In fact, I remember him holding his newborn niece and thinking what a great Dad he was going to be someday…he was so natural.

I was right. If he does nothing else in this world, he will be forever known as one helluva a father. It is his most important job and role ever, and he’s knocking it out of the park.
I’m so thankful to have such great men in my life.

Team

I think most of us dreamt what our relationships with our children would be like before they actually came along…

I thought I would have a hockey playing son who was also a drummer in a rock band. He would be sensitive and respectful and love sports and animals.

I thought my daughter would be just like me. She would LOVE PINK, anything with a tutu, but also be able to debate fiercely about politics and current events and play every sport out there, preferably on the same hockey team as her brother. She too would be in a rock band, when she wasn’t at roller derby practice or campaigning for class President.

And then my two children were born, grew up a bit, and became their own, amazing, people.

Still holding hands

Everything I thought I wanted them to be was blown away by everything they are. I’ve never been more thankful to be entirely wrong about what I wanted.

My daughter loves to sing. And she’s good at it- really good. She is very independent and she is only nine. She pretends she’s a kitten instead of chases boys. She watches ‘Too Cute’ instead of listening to ‘One Direction.’ And she refuses to follow the crowd. If her friends like Minecraft, she will play Animal Jam. She wants to be different. She wants to be a leader. Today she’s asked if she can dye her hair turquoise … I said ‘sure!’ She makes sure everyone is included in the games she plays and won’t have it when others say ‘oh that girl can’t play with us.’ I’ve also shown up to school unannounced and found her having lunch with the ‘new kid’ … a boy… showing him around and hanging out with him because no one else would and she wanted to make sure he wasn’t alone and knew he would have a friend. She didn’t care that others were ‘oh, you’re talking to a boy’ teasing. I’m so proud of her.

My son is a self-proclaimed geek. He loves science more than anything and already has several ideas for companies. He wants to learn to be a pilot and has already taken his first flight lesson. He’s tested video games for Disney to earn money for additional flight lessons and can’t wait to get up in the air again. He has zero interest in sports and I don’t mind at all. He’s also found his voice this year…the one where he stands up to other kids at school for calling someone ‘gay’ as a slur. I couldn’t be more proud. I also couldn’t be more proud when others tell me how amazingly mature he is…he’s got a very old soul.

Both of them are nothing like I imagined they would be but so much more. SO SO much more.

My daughter has been finding new music lately and recently discovered Lorde. She loves the song ‘Team’ and I think it’s perfect for her…and us. There is nothing I love more than belting it out with her in the car, together. With her brother rolling his eyes at us. But we don’t care…so there.

We’re a team. We’re all learning to live with everyone’s characteristics and appreciate them. My son is learning his sister doesn’t want to play the same things he does…and he doesn’t want to play the same things she does. For the first time, that’s ok. Instead they hang out and play what they want, while sitting next to each other.

Still close.

Still near in case one wants to tell the other something.

All while I watch in awe at the amazing young people they are becoming. Half their father, half me..but so much different than I could have ever have imagined. But that’s fine…Because at the end of the day…we’re on each other’s team.