Bucket List

Last summer, the Mad Scientist and I had a long weekend without the kids. I reveled in the luxury of extra time to myself. I vowed in this here spot on the web to take more time to myself. Shortly thereafter, DQ got sick and I remembered why I didn't schedule in time for myself. The problem with all of that is both were right. I deserve to do things for myself, yet I still have to take care of my family.  So, for a while now, I've been trying to figure out how to accomplish that goal.

Then one of my circle of pulmonary hypertension friend's daughter was placed on hospice. They created a bucket list for Molly. When it became evident that Molly wasn't going to live long enough to accomplish the vast majority of things on her bucket list, people from across the country and the globe printed off Molly's picture and took her places and gave her experiences so her bucket list could be completed. In Molly's final days, she laid in her bed with her mom, looking at her picture traveling the world. She did so many things. And she continues to do so.

Molly's story made me think. I can't continue to put off my life until tomorrow. While I spend so much time trying to give DQ a wonderful life, I've ignored that for myself. And even though I tell the kids all of the time that nobody knows when they are going to die, something in me keeps saying "wait until tomorrow." So, I decided to start my own bucket list.


The problem is . . . I don't know what things I want to accomplish. I don't want to run a marathon or climb Mt. Everest. If I never swim with the dolphins or learn to play the violin, I'm okay with that.  So, when I started this blog post last week, all I could think of was one thing--visit Iceland.  But, really, I'd rather sit on a beach closer to home, than jump on a plane for a really long flight. So I took Iceland off my list.  After all, a bucket list should be full of things you feel compelled to do and would regret not doing. While I think it would be fabulous to see Iceland, I'd rather be home relaxing with my family.

And so I continued to ponder what would be on my bucket list. Eventually, I came to the conclusion that there isn't any single thing I must do or I will regret not doing it . . . except spend time with my loved ones. I want time to enjoy my family. I want to be with them and see them enjoying life. I want to entertain in my home, inviting friends over, and make them lavish meals that I can watch them enjoy. Or even have a house that is convenient for just stopping by for coffee in the evening to chat. 

I don't want to miss my kids going to bed every night. I want to hug them and kiss them and tell them stories. But, I still want to get them off to school in the morning and kiss them goodbye.

All of these things are very difficult right now because our house is so small. In order for me to be home at night when the kids go to bed, I have to pack up my work for the night, bring it home and clean off the dining room table just to set my computer down. While it only takes about 15 minutes before and after I work, it is a hassle that I just don't want to deal with for an hour's worth of work, so I kiss my babies over the phone and then again when they are asleep. But, if I had an office at home dedicated to my work, it wouldn't take that long. We don't currently have the space for me to have my own office (my kids share a bedroom!).

If I want to cook for friends, we have to squeeze into my dining room/office. Six people fit, sometimes eight, but that requires some people sitting in the other room! This is not conducive to entertaining.

So, in order to make my "bucket list" a reality, the Mad Scientist and I are looking for a new house--our forever home. I am excited and petrified all at that same time. Please wish me luck and when we have some space, you'll all be invited over for coffee or a gluten free lasagna extravaganza! (Yes, I am feeling better gluten free. Can't imagine going back!)

Wishes Do Come True

The Dancing Queen's wish from the Michigan Chapter of Make A Wish was fulfilled last week!!! If you recall, DQ wished to meet the characters, especially Elmo and Mickey. So bright and early on Saturday, December 17, a limo picked us up and took us to the airport to fly to Orlando.

Make A Wish arranged for us to stay at Give Kids the World Village, an amazing resort for families on their child's wish trip. The Village is set up just for kids and was so amazing that we could have stayed there all week and had a wonderful time without any theme parks. Here is a picture of us as soon as we arrived at our villa.

We were at the Village from Saturday afternoon through Friday morning. We ate most of our meals in the Gingerbread House where all of the tables and chairs were kid-sized and ceilings were decorated with toys. The angels (volunteers) not only served us food, but carried our trays for us. Right outside the Gingerbread House was a carousel. The kids most have rode it a dozen or more times. Probably a couple of dozen times. They loved it!

The Village also had a giant sleeping tree that snored at us, a water park complete with pirate ship, dino putt putt, a train station with toy trains and a kid train, a life-sized Candy Land Game playground, and lots of other fun things for kids. And every day, when we returned to our villa, there were gifts for the kids! They got stuffed animals (lots and lots of stuffed animals). They got board games, videos, music, and other toys. It was all magical. A special place was the Castle of Miracles, where the kids could play and everyone can see the ceiling covered in over 140,000 stars. Each wish child who had stayed at the Village had a star on the ceiling. Here is a picture of DQ writing her name on her star for the Star Fairy to put in on the ceiling of the Star Tower (an addition built on to fit more stars!)

Both kids also got magic pillows in the Castle of Miracles to have magic dreams during our trip and at home.

One of DQ's favorite things was the ice cream parlor, which was open all day long. We had ice cream every day and we even had ice cream for breakfast! Sometimes, she needed two spoons to eat the ice cream cause it was just so good!

We had so much fun in the Village. The kids smiled whenever we were there and skipped as they walked about! 

We also got passes to Disney World, Sea World, and Universal Studios, so we spent three days at Disney World seeing Hollywood Studios, the Magic Kingdom, and Animal Kingdom. We also took the kids to Sea World. The Mad Scientist and I spent an evening at Universal. Everything was so amazing. We got to the front of the line for everything we wanted to do. DQ was given royal treatment. She had a button from Give Kids the World that told people in the park she was a wish kid, so when we went places, the people knew. We watched lots and lots of parades and in each one, at least one dancer stopped to talk to DQ. Simply amazing. Here is a picture of DQ waiting for the Pixar Parade.

We watched lots and lots of shows.DQ' s favorite was the Mickey Christmas Show in front of Cinderella's castle. Below are some pictures. I tried to capture the pure joy she was showing. These are close, but not true enough. I guess you had to be there to see the utter joy of her being able to sing carols with Mickey and Minnie.

We also did awesome things like eat lunch with sharks, take a safari where a giraffe walked in front of our bus, and see Darth Vadar in person! A highlight was feeding and petting dolphins at Sea World.

But, the main wish for DQ was meeting the characters. And we did that. A lot. We met Jake (from Jake & the Neverland Pirates), Lightening McQueen, Mater, Phineas & Ferb, a green soldier from Toy Story, Buzz, Woody, Pluto, Goofy, Minnie, Mickey, Squidword, Belle (from Beauty and the Beast), Ariel (the Little Mermaid) and Prince Eric, Shamu, and Tinkerbell. There were probably more as well, but I can't remember right now!

TRex's favorite was probably meeting Jake! 

One of my favorite moments was DQ meeting Lightening for the second time. We were about to leave after taking all kinds of pictures. DQ ran back and hugged Lightening as only a three year old could do. She just stood there, hugging his headlight, knowing she might not see him again, just like he was a much-loved friend.  The moment was magical (yes, that word again.) Lightening is one of her all time favorites. She sleeps with him every night.

Meeting Mickey and Minnie was pretty awesome too. They came to visit us at the Village, so we got a little more time with them.

DQ was all smiles when she met Tinkerbell. 

But the most emotional moment of the week was meeting Elmo. DQ's initial wish was for Elmo and at Sea World, that wish came true. I was a blubbering mess as Elmo and all of the Sesame Street friends came to meet with us individually after their Christmas show.

This trip has proven that sometimes, wishes do come true. Seeing my baby's wish come true has done so much to help us all. The happiness that has been brought to our family because of DQ's wish being granted is magical. I know, I've used that word a lot, but there is no other way to describe what was the trip of a lifetime and memories I will cherish forever. I've never seen my girl as happy as she was last week. Thank you so much to the Michigan Chapter of Make a Wish and Give Kids the World Village!!!!!!

Halloween

We celebrated Halloween like most people do--went out trick or treating with the kids at least a gazillion times before Halloween and then topped it all off with a nice jaunt around our neighborhood, collecting more candy. We have so much candy now that it will not be eaten until next Halloween (not that I will allow it be in this house that long).

The kids had an absolute blast though. They loved every minute of it.

DQ dressed as Thomas the Train for the second year in a row. And for the second year in a row, I purchased a different costume that she didn't wear.

Cap'n Hook! I bet you never guessed that was coming.

What's not to love about Halloween? You get to pretend to be something else and people give you candy.

Yes, she was eating a Snickers.

Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)

Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.

Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.

I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.

Feeling Blessed

I should really be showering and packing since I planned on leaving my house over an hour ago for a fabulous 4 day weekend away with my girlfriends. Instead, I've been reveling in a morning to myself. I enjoyed a leisurely breakfast, good coffee, and playing with pictures of my beautiful children. I figure my friends would understand. I have an entire weekend with them and never get time alone, so I'm taking this morning.

This time alone and my ultimate decision to take the weekend away, has led me to one conclusion: my life is wonderful. I am lucky beyond lucky. I have an amazing husband, fabulous kids, a great family, wonderful friends, a great job, and so much more.

Today, I'm grateful that I can take a weekend away with friends for the first time in 7 years (I think). I'm grateful that my children are alive and able to hug me and goof around. I'm mean look at those faces.

I'm so lucky to have these precious children call me mommy.

I'm grateful for a husband who is my best friend and my life. I'm grateful for my mom who watched the Dancing Queen all week because she was sick and unable to go to school. I'm grateful that I have a job where I can go away for a couple of days and people can appreciate how much I need it.

I'm grateful for so many more things and this morning, I can see it all. But mostly, at this moment, I'm grateful for these smiles.

What are you grateful for today?

Fraud

I haven't been posting because I feel like a fraud.

In my last real post, Thursday night, I wrote how I intended to make "me time", how I was just going to plan it and make it happen because I am worth it.  Unfortunately, I was quickly reminded the next morning of why I don't normally have me time: the Dancing Queen's precarious health.  We spend so much time on doctor's appointments, therapy, procedures, etc, that "me time" is swallowed up by being a "normal" family, work, and sleep. And I can't just make "me time" happen unless I forgo sleep (much like I am doing right at this moment).

That is why I feel like a fraud. I promised to myself only a couple of days ago that I was going to make time for me and the very next morning, the promise was broken. I don't know how to rectify this or if rectification is necessary, but I do know that I don't feel right.  I feel guilty for declaring that I enjoyed the time away from my kids because for a moment I didn't realize that the Dancing Queen wasn't doing well (because I didn't see her for a couple of days). I feel guilty for making myself a promise (that was told to the world no less) and know it can't be kept (not with DQ home from school two days, three appointments this week alone, then school starting next week).

And maybe "guilt" isn't even the right word. But I don't feel right about my "me" post, but I also feel like I was right in the sentiment behind it. I am worth "me time". I am more than just my family and work, but in order to keep it all going, I have to continue putting myself further behind.

I also don't feel right about wanting to take time away from my kids and taking care of them because it is not their fault either. As much as I didn't ask to be the parent of a special need's child, the Dancing Queen didn't ask to be born with a horrific set of conditions that threaten her life and make everything more difficult, even the easy stuff like, breathing and eating.

And so I feel like a fraud. My statements on this blog last Thursday, while heart-felt at the time, were not quite right. And this blog is merely an extension of me, so I have felt not quite right. I am not that together. It is not as easy as scheduling "me time".

Wordless Wednesday: Wish A Mile

The end of last week was the Wish A Mile 300 Mile bike tour for Make A Wish Michigan. There was a team riding for the Dancing Queen (well one rider, but she was considered an official team). We went to greet the rider at the end of the tour and enjoyed the day.

 

 

 

 

 

You know the day had to be good since the kids crashed out immediately after.

Celebration Time!

Last night, my lucky kids had several firsts. They both went to their first carnival. They both went to their first concert. They both saw fireworks for the first time.

The night began with us meeting the Editor, Car Guy, Little Car Guy, the Chef, Ma, and Papa in the parking lot of Ma and Papa's church (actually the Dancing Queen and TRex came with them and the Mad Scientist and I arrived separately since I had to work later than planned). The ten of us then joined the throngs of people heading to the river front. The walk was filled with interesting people to see, lots of offers to purchase glow necklaces, and of course passing the carnival midway. TRex wasn't impressed. He found the walk boring. I enjoyed it though and DQ was pushed the entire way by the Chef, so she had fun.

After a difficult search for the tarp Ma laid out early in the morning, we settled into the side of a hill right by the river. The hill had about a 30 degree incline, so sitting was not easy. We arrived right when the band started to play. DQ thought it was awesome.

The boys looked a little bored with the music though, so the Mad Scientist and the Car Guy took them to the midway for some fun. DQ was jealous and wanted to go to, so Ma decided to take her with the boys.  The midway was full of all your street carnival games and rides. Lots of people to see and things to do. Neither of our kids had seen such frivolity before and it was very exciting.

DQ only lasted about 5 minutes though before she wanted her mommy. Ma brought her back to the blanket and immediately DQ asked to go to sleep. (It was 45 minutes past bed time, the temp was high 80s, very humid, and she hadn't really eaten, so she was plain tuckered out.)  We made her a nice little spot on the side of the hill, took her glasses off (did I mention DQ got glasses?), and gave her a pacifier.

DQ in her glasses with her pacifier last night.

DQ was ready to sleep, but the music was playing. And wouldn't you know it? That Dancing Queen couldn't help herself. She was laying on her back on the hill, covered in a blanket, sucking a paci, and dancing. She had her arms swinging and body swaying as she laid down. But when you dance while laying down on a 30 degree angle, on top of tarp, you slide right down the hill. So, every couple of minutes, we had to pull DQ back up again. That upset her, so she decided to cease sleeping and go with the fun. She spent the rest of the "concert" dancing.

(I say "concert" because the band wasn't that good and despite being on the opposite side of the river, the base was up so high that it vibrated everything and made it uncomfortable to listen and for the Editor, hard to breathe.  There was a point between songs that an entire flock of geese swam up the river in triangle formation, all Canadian geese gray and black, led by one white goose at the tip of the triangle.  They got up to the band stand right when the band started to play again. The geese immediately turned around and quickly headed back where they came from. The band definitely deserved the snub.)

DQ didn't care about the quality of the band. She heard a beat and music, so she danced and loved every minute of it. Each time a song ended, she'd clap. (Many times, she was the only one.) We had everyone around us watching her. It was so much fun. She spent a good 20 minutes alone dancing with the Editor and having a blast. Here she is dancing with her Ma.

The boys came back right as the band stopped playing. TRex went on a tilt-a-whirl and bumper cars. He had a blast. This is a huge deal for him because we couldn't even get him to ride the toddler train when he visited Santa. He was too scared. So the idea that he actually got on the tilt-a-whirl is huge. He loved it! Maybe next time it will be easier for him to move past his fears.

As twilight gave way to darkness, DQ grew anxious. She wanted to see the colors in the sky.  And finally, the fireworks started. DQ was enthralled. She was laying in her aunt's lap, looking directly at the sky while the fireworks were directly above us.  (We literally had the best seats available.) I don't think DQ closed her eyes once for the entire twenty minutes. Simply put, she was in awe. (This morning, she inundated us with questions about when she was going to see the fireworks again.) DQ's reaction was magical for me. And, I have to admit, last night's display was probably the best I'd ever seen in person.

Unfortunately, TRex did not have the same reaction. At the first boom, he screamed and cried. He wanted his puppy dog. Mommy and Daddy were not adequate.  Puppy dog was the only one he wanted. I thought we were going to have to leave early, but then inspiration hit and I promised TRex we'd go straight to the car as soon as the fireworks ended to get puppy dog. He stopped screaming and crying at that point, but he is adamant that he will never see fireworks again.

The night ended with the long walk back to the car in the crowds. A fight broke out right next to us and scared the heck out of the Editor and I, afraid for our babies. And the car ride home was an entire story onto itself. Let me just say that the entire world seemed to be leaving down the one road we were heading to, but nobody moved an inch for 15 minutes, then an ambulance came. And then another. And then another. We were eventually able to turn around. But it took us an hour to go a mile. I held my phone up so the melting down kids (awake 4 hours after bedtime) could watch "The Cat in the Hat" and we didn't get home until after midnight.

Overall, the day was a total success. My kids had a blast. I can't wait to do it again and can only hope TRex's fear subsides with time.

Did any of you see fireworks this weekend?

Father's Day

For practically my entire life, Father's Day was celebrated the same way. We'd wake up early, excited to be on vacation. It was always the first morning of vacation. We'd eagerly wait for the bell to ring that it was breakfast time and leave a present at Dad's seat at the table. We'd all eat together: Dad, Mom, the Editor, myself, my paternal grandparents, friends if they were with us, eventually our spouses, and even our kids. All of us at the same table, enjoying a Father's Day breakfast.

After breakfast, the dads would play golf and the girls would go shopping.  By late afternoon, we'd all be back, sitting out at the beach, swimming, reading, enjoying our day together. Dinner would be shared around the same table again. After dinner, we'd mosey out to the porch and sit and talk over coffee, the lake a beautiful backdrop. The night would inevitably end with a bonfire.

That was Father's Day.

This year is different. We no longer take that same vacation and not all of us are together. But at least I will get to share a meal with my dad. It will be lunch instead of breakfast and dinner, but the water will be near (just not quite as close or accessible). I know that having all of us together is what matters, but part of me is crying inside that it's not at Fireside Inn, not the same. Perhaps, deep down, the real problem is that I'm only getting 2 hours with those I love rather than an entire week.

I hope all of you have a wonderful Father's Day and are able to spend it with those you love. For those fathers out there whose children have left them too soon, my heart goes out to you especially. For those children whose fathers are no longer here to celebrate, extra hugs to you as well.

Take Me Back Tuesdays

A new feature is born today: "Take Me Back Tuesdays". I will endeavor to blog about something from the past on Tuesdays. To make myself stick with it, I've even created a button for "Take Me Back Tuesdays". I hope you enjoy my peeks into the past.

 The first installment of "Take Me Back Tuesdays" is inspired by my paternal grandfather's birthday this past Saturday. I believe he would have been 88, but I could be wrong. I know he was older than my grandma and she born in 1925, but don't recall the year he was born. My grandpa died over 14 years ago in February 1997 from complications due to congestive heart failure.

Before that, he was born, I believe, in the south, and raised an only child. He went to military school, but never entered the military despite being the perfect age to join during World War II. I believe it was his health that prevented him from joining.

I'm not sure when, but he moved to Michigan. He lived with his best friend, a reverend for whom my father was named. The day my grandpa died, his best friend paid us a visit and told us a story of those early days. First, you must understand that my grandpa never liked cheese at all. He hated the smell, the taste, the thought of cheese. Back in the 1940s when he lived with his best friend, the best friend came home so excited to share a new experience he had with my grandpa. The friend regaled this story of going out to eat and having the best food ever. Actually, when he told the story, the good reverend in his late 70s, described the food as an orgasm in his mouth. He had never tried it until that day and he wanted to share the experience with grandpa, so he had my grandpa close his eyes and open his mouth to taste this new food: PIZZA. My grandpa did so and quickly spit it out, shocked that his friend would be so cruel! I imagine this is how he looked around that time (although this picture is a couple of years older as it was taken by my grandma).

 

I never remember my grandpa smoking, but apparently he did well until the end of his life. He hid it well.

My grandparents met in the late 1940s and married in February 1951.

My grandparents lived in Michigan most of their lives, but my grandpa was always southern boy at heart. Here is a picture with his cousins and maternal grandma taken during his honeymoon down south.

In February 1952, my grandparents had my dad. He was their only child due to the doctors wrongly typing my grandma's blood and not realizing she was Rh negative, while my dad was Rh positive. My grandparents' two children after my father never made it because of the Rh factor.

This is one of the only pictures I've seen of my grandpa and dad as a child. They were on a trip to the mountains. I presume Tennessee because that is where my grandpa's mom lived, but it could have been the Carolinas as well since most of the family lived there. I love this picture.

This picture was taken on my parents' wedding day in 1974.

This is a four generation picture, taken in Florida when I was 6 months old in 1977. It is my dad, my grandpa's paternal grandma, my grandpa, and I.
 
My grandpa loved cars and worked as a draftsman (although I have a memory of being told he was also an Arthur Murray dance instructor for a time). My grandpa loved cars so much, he never understood why I would go to school to be an engineer and not design cars (he never knew I didn't end up becoming an engineer at all, he died before I switched majors from engineering).

In the early 1980s, my grandpa was relocated to Virginia for work. That is where he ended his career. It was a good time for my grandparents. They were able to travel all over Virginia and Tennessee, down to the Carolinas and take many, many weekend trips in their huge RV. They spent a lot of time with family down south. Below is a picture of a visit we made to Virginia one Thanksgiving. It is me, my grandpa, his mom, who lived in Knoxville, and my dad.

My grandparents also spent a lot of time in the 1980s and early 1990s square dancing. I remember going into their Michigan basement and seeing tons of matching outfits just like this. They enjoyed it so much. These are the times I remember most, after they left Virginia and came back home. They spent a lot of time with us and they still traveled a lot. Eventually, the travel got to be too much, so they bought a place in Florida and wintered there.

The picture below was taken in Florida. This is exactly how I remember my grandpa. Well, like this, or sleeping in his comfy chair in his living room, with his hearing aid off and grandma yelling at him to come to dinner.

The last couple years of my grandpa's life were not easy. He was very sick. Below is one of the very the last pictures we have of him socializing before he died. It was only a couple of years after the picture above, but he had aged considerably.

My grandpa was not necessarily an easy man to know, which should be obvious since I didn't know where he was born, when he moved to Michigan, or much about his back story. (Grandma did most of the talking.) But what was important to me is that he loved me unconditionally.

At Christmas, Grandpa would buy each of us girls special gifts just from him. It was usually jewelry. And it was so special because he took his time to do this just for us.

Grandpa loved ice cream. I spent a lot of dinners at my grandparents house as a child and grandpa had to have ice cream after every dinner. If there wasn't any in the house, we'd go out for ice cream. I wonder if that is how my grandparents met. She worked in an ice cream shop. I will never know. While my grandma is still with us, she does not remember much. And while she lives much of her days in the past, it is a past even before knowing my grandpa usually.

We used to spend a lot of time in the summers with our grandparents as well, especially in their motor home. My grandparents camped with many friends, but the two sets I remember most were headed by firemen. Of the three men, the two firemen couldn't start the camp fires, so that was always my grandpa's job. The firemen, rightly, put out the fire at the end of the night. I have lots of memories sitting around campfires with my grandparents and their friends. Or taking my grandpa's binoculars down to the water to watch freighters go by. We'd take trips to Canada across the ferry. And I remember watching my grandparents play cards and my grandpa being the only man amongst the table of 6.

I was lucky, my grandpa lasted longer than most of the grandpas in my group of peers. It was still hard to say goodbye, especially since by the time I drove back from school to say goodbye, he was no longer with us even though he died the next day. For the last 14 years, Grandpa's ashes have been fertilizer in a memorial garden he planted and pruned and loved for years outside of the church my grandparents helped to build. He was a kind man, a thoughtful man, and his last years before he got sick, he did learn the love for pizza.

I miss you Grandpa and I love you. Happy Birthday!