Sunday, June 30, 2013

Thursday, continued...

Okay, I was rushed when I was writing that last post.

One thing that struck me about most of my Thursday is how lucky I am.  I hear a lot of nice things about how I keep it together and that I do a good job.  But, really, I am lucky a lot.  Some times things just go the way they are supposed to - despite my efforts to force it a different way.

And it was a good day to illustrate the emotional roller coaster that is the life of raising a child with special needs.

I was SAD (and crying, something I rarely do) by 9 freaking am.  And just a few minutes later, I was THRILLED to hear that I shouldn't have taken her to that appointment anyway.  Then I was happy for a couple of hours.  Then when Terri reminded me of our next appointment, I was so relieved she reminded me!  Can you imagine if we totally forgot?  Then I panicked.  There was no way I was going to make it in time!  Then I was thrilled that I got lucky, yet again, that the appointment time had changed (that never happens)!

Not to mention that I'm already on emotional overdrive with this surgery (and at the time, the trip up here) totally on my mind.

We got home right at 3pm and Terri had to leave.  But I had some other errands to run.  So, I put the kids back in the car and we went back to the pediatrician's office to pick up more scripts I forgot.  With ADD meds you have to go and pick up a script each month and take it to the pharmacy.  Of course I totally forgot to get them when we were there earlier.  But, on a positive note, they are now on the same schedule.  So, that takes out one trip each month.

By the time all was done, it was late in the afternoon and I still had not packed the boy's stuff for their trip the next day.  On Friday morning Tom was driving them halfway to Pittsburgh to meet his Mom and Cal so they could take the boys home with them for the next week or so.

It was a hectic day!  I was looking SO forward to going out with some friends that night for some laughs and drinks.  We were supposed to meet at 7:30.  But, by the time I got the boys all packed up, it was 7pm and I was no where near ready.  So, I was about an hour (or so) late getting there.  Fitting for the day, I think.

The bottom line is that I have too much crap crammed in my day.  And the kicker is that 80-90% of it - most of the time - is crap I don't want to do.  But Harlie is worth it.  And she makes me happy, despite how miserable our schedules can be.

Anyway, I had a GREAT time out with my girl friends.

From left: Me, Lyndsey, Lynda, Bethany, Brandy and Mary Ruth
After, ahem, a few drinks, we actually danced.  I haven't danced in years.  We had a blast.  I keep looking at this picture, and smiling.  Another example of why I feel so lucky. I am so loved, by some wonderful people. Thank you so much for a great night, and great memories!

So, that was Thursday.

Friday was okay.  I wasn't feeling 100% well (not surprised, are you?)  So, it was a bit of a struggle.  At almost 11am, Tom came home and loaded up the boys to meet his mom.  I was definitely not looking forward to saying goodbye.  As much as they drive me crazy, I don't want to be away from them.  And Cooper seems to love me so much.  How's he going to survive without me?  He's only four!  But, they were SO freaking excited to go that I couldn't be but so sad.  Two nights without them in the house.  Weird.

Tom had a date night planned for that night.

I don't talk much about how much of a strain stress can be on our marriage.  We are happy, most of the time.  But this week was hell.  Seriously.  Monday night was Murphy's swim meet (we were both out, but not together).  Tuesday night I had my hair cut (I was gone).  Wednesday night was our special needs sibling night (I take Murphy to meet some other special moms and their kids who have special needs siblings, so I was gone).  Thursday night was girl's night (I was gone again).  So, we saw each other very little.  And that just makes it worse.

Plus we are in the middle of renovating our old playroom into my new office!  Woohoo!  We took out the carpet and had hardwoods installed.  Tom went and picked up the hardwood material and let it acclimate for a few days.  The installer was scheduled for Tuesday, I think.  Then Tom pulled out a piece of wood and saw that it wasn't the right material.  Of course.  So, he had to reload it in his truck and return it.  Then order the correct material.  Then bring it home, unload it and let it acclimate for a few days.  So, it was finally installed on Friday and Saturday.  And wouldn't you know that he ran out of wood before he could finish?  Just six more pieces is all we need.  Figures.

Anyway, back to what I was saying - it's just been a stressful week.  We are both super busy and we are both dealing with the anticipation of this surgery in our own way.  And our ways are different.  Mine is better, of course.  Just kidding.

So, we desperately needed some alone time so we could talk without getting angry with one another - before coming up for this hospital stay.

Tom surprised me by scheduling a couple's massage.  No doubt we were due for some relaxing!  Then we went to dinner at a Vietnamese restaurant.  It was so good!  And we were getting along great - we even got to walk the dog together when we got home.

Saturday came and Tom had his last bike ride before his big race on July 6th.  I don't know if I've mentioned it, but Tom is biking 200 miles on July 6th.  Two hundred miles!!!  Isn't that crazy?  It will take him ALL day (and into the night I'm guessing).  I am SO glad that his training is DONE.  Training on a bike is WAY more time consuming than training for a marathon.  It has not been easy the past six months.  I am looking forward to a less strenuous summer riding schedule.  With more running for me, I hope!

Even though we had our date night the night before, we didn't discuss Saturday's schedule.  Clearly, we both had visions of how the day would go.  Unfortunately, they were very different.  My younger brother and his girlfriend were having the family over to their house for crabs at noon.  Tom couldn't even go with us.  I tried VERY hard to get there close to noon.  I promise.  But Harlie was high maintenance that morning and I was alone with her, while still having to go to the bank and back to freaking CVS (I go there WAY too often for my liking).  Plus there was some other stuff I had to do (like start the laundry - I still had to pack for us to leave the next day).  And I had to get some stuff for the cookout at the grocery store.

So, again, despite working my guts out, we showed up at 1:30.  And we had another party to go to that started at 2pm.  Clearly, our day was going to be off.  Typical.  Except I still had four loads of laundry and I had to pack!  Ugh.

After that party, I went home and picked up Tom and we headed to Brandy's party.  I think we got there a little after 3:30.  We were having so much fun, that we ended up staying till 8pm or so.  ACK!

So I did laundry till 1am.  And Sunday morning was a mad dash to get out of the door.  It was awful.  But, somehow, we got it done (for the most part).  We left some things.  And we had to scale back a bit because everything wouldn't fit in our luggage.  I've now determined that we need one more large suitcase.  We do have to do this all over again in August sometime.  And then a few months after that, I'm guessing.  It's not worth the stress of having to decide what you can live with or without when you're packing for a special needs child.  I mean, we had to pack almost a case of formula for crying out loud!

Anyway, we were stressed leaving the house.  And we didn't have time to take Rooney to Brandy's house (she's keeping him for us) so we packed his stuff and she said she would come and get him.  Leaving him behind was brutal.  He just looked at me with his big sad eyes and he tried so hard to get me to play with him.  I couldn't help it, but I cried all the way to the airport.  He is so healing for me every day.  I hate that I won't get that until I get home and I don't even know when that will be!

So, after we got through security, we went to sit down to eat.  Tom ordered a turkey sandwich and I ordered a mozzarella/tomato sandwich.  To tell you the truth, I wasn't really hungry.  I've been more nervous than usual this time around, so eating wasn't sounding so good.  The waitress comes to get our drink order and brings us our beers.  She said she was coming right back for our food order.  She never returned.  So, Tom went to the bar to order.

Just a few minutes later, she brought out Tom's sandwich, but she held it up at the bar, and said, "turkey!" instead of bringing it to our table.  Weird.  So, Tom got up to get it and asked about my sandwich and she said, "She already ate it."  What?  So, Tom brought his sandwich to the table.  And a couple at the bar said that when they ordered a turkey sandwich - just a few minutes prior - the same waitress said, "We haven't had turkey in years."  What?  Clearly, this waitress has a problem.

So, we share the turkey sandwich.  It was pretty apparent that I was never going to get my sandwich.  Luckily one of the other employees called for some management and he had to take care of some messed up checks.  Tom said a guy at the bar who ordered one beer paid for our order.  Tom went to pay our bill and told the guy that the waitress is confused.  And he said, "Oh yeah! She has full on dementia!  Sadly, it came on very suddenly."

Then we got on the plane.  And flew to Boston.  The second we landed in Boston, I felt better.  At least some of the stressors are behind us (saying goodbye, packing, traveling, etc.) and now we can start to focus on just being here.

Our wonderful neighbor, John Hudson, has again taken care of our hotel bill for us.  He got us a room at the Marriot in Coolidge Corner.  It is a wonderful area!  And we had fun taking a walk and just looking around. By the time we checked into our hotel (around 3, I think) I was starving!  So we went to a great pizza place for an early dinner.  Then after we let Harlie play in the room for a little while, we took another walk and got some frozen yogurt for dessert.

Tomorrow we have appointments at the hospital with cardiology (9:30), pre-op (11ish) and our surgeon (2:30).  So, it will be a long day.  Then Tuesday is our day off and we are going to take Harlie to the aquarium and where ever else the day takes us.  Then Wednesday is surgery day.  And thinking about it makes my stomach sink.

It is now late, and this post is long enough.  Thank you for being there for us.  Thank you for reading this.  It really helps me.  And I appreciate it.

Much love,
Christy xo


Christy said...

I rarely post on your updates, but I just wanted to let you know you all are ALWAYS in my thoughts and prayers. Aaron and I can relate to some of what you all are going through....It is so very hard to have a child with health problems and/or special needs. Your love for one another will help get you through these tough times. I always say Aaron was sent to me to be my rock...I know he will be there for me know matter what...It seems like that is how it is with you and Tom. I know the coming days aren't going to be easy for you all... I hope you all can lean on each other. Sweet Harlie is always on my well as the boys. Hugs to all of you!!!

B-Mama said...

So glad you all made it safely! We are thinking of you constantly!! Xoxo

Heather said...

such a newsy update and you are right, you are crazy busy! sending all my prayers to Boston this week. thinking about you the whole time. xoxo

Susan said...

Pre-surgery is always an emotional time especially for the higher stakes surgeries. I'm glad that it all worked out and you made it to Boston. You'll be in my thoughts all week. I hope Harlie does really well with this surgery and that it does great things for her. Even though it's tough you are doing the right thing and soon it will just be a memory like the other surgeries. You WILL get through it. (((((HUGS)))))