1 year

525,600 minutes, 525000 moments so dear

525,600 minutes how do you measure, measure a year? 

In holidays, in family events, in sickness and car accidents. 

In birthdays, in vacations, in wondering why.   

In 525,600 minutes how do you celebrate after the end of a life?

Yes I just made up new lyrics to Seasons of Love from Rent.  I wanted to show that yes even though Mom isn't here the world still spins.  (Hamilton reference there)

I miss her every day.  I miss seeing her in the middle of the night when I had to get milk for Ana's low blood sugar.  I miss telling her I had to go to work and repeating at least 5 times when I got off work and if I planned to stop at Target after, because that would hinder me coming home on time.  

I miss commiserating about being a mom, and apologizing to her if I did half of what Ana that drives me crazy to her.  I miss her saying that silly things were poor excuses for whatever she was asking me. She would complain about so much and I even miss that.  Because even though at times she exasperated me, she was my number 1 fan.  

Before she died I was getting over Pneumonia.  I saw her March 12 and that was when I signed the orders for comfort care.  March 19th was the last day I saw Mom alive.  We had Pastor Kregg come and pray with her but the effects of morphine were starting.  She kept saying that someone was banging pots and pans around and that he had to go to the doctor.  I knew she was talking about Dad, because that was something he had done.  Then after Pastor left she kept saying that someone was in the bed with her.  I told her no, but if she wanted I would lay with her.  She said no with a laugh.  I told her that she could go and it was okay, and she was like where am I going?  She didn't understand I was giving her permission to leave us, even though I really didn't want to.  

Do I wish that was the last conversation I had with her?  No.  I wish I told her how much I loved her and how much she meant to me.  How grateful I was she gave Alex and I a home when she didn't have to.  How she didn't get mad at me for getting pregnant just as I became unemployed.  How she after many years of not seeing eye to eye accepted Alex as if he was her own.  How she always made ever problem better. 

 I miss Mommy hugs, I miss her making us go out to Perkins after driving for hours because she wanted to eat in one of her favorite restaurants.  I miss her saying be careful and I love you when I left the house.  I miss her leaving a voicemail on my phone and hearing, "It's your pain in the ass mother." I miss hearing her count down the days to her Cape Cod trip and then calling me to complain about everything Dad did that annoyed her.

I wish alot of my friends got to know my mom, she was so private and always seemed like a grumpy lady, but she had the biggest heart.  I would give anything to have one more moment on earth to see her to hug her, to tell her how much I loved her even though I may not have acted like it.  

I'm sorry for all the times I disappointed you Mom, I wish I had done alot of things differently.  I'll be honest there some things I wish I hadn't listened to you about, but I made the best of it.  

I'll love you forever, your baby I'll be.  I've made it through the first 525,600 minutes without you.  Hoping it gets easier, but I'm thinking it might not....

Send some butterflies and cardinals our way this week to check in on us all.  I know we love seeing them.

Happy Birthday in Heaven Mommy

 

This is going to be a hard day.  I'm writing this a week out so that I can try to collect my thoughts in time for me to post this for what would have been my mom's 82nd birthday.

When I was a kid I thought I had the strictest mom.  She always needed to know where I was and who I was hanging out with.  She hated that kids "hung out" at the mall so I wasn't allowed to do that (though my best friend Beth and I always found ways around it).  I could only spend a half hour talking to friends on the phone, I always had to be in bed earlier than my other friends.  Why were other people's moms so much cooler than mine??

But then I grew up, and our relationship changed.  Mom was my biggest fan, when I decided to change majors a year and a half into what was supposed to be a 2 year degree at DCC, she was there.  When I thought I wasn't going to graduate, she was there.  When I was unemployed for months at a time she helped me out.

When I worked in Middletown and had a 45 minute commute and I closed, she made sure I called her so she would know I got home safe.  My work families became her families.  The lists go on and on.  Anastasia mentioned the other day that even though Mom hasn't been in our home for 10 months now she misses seeing her on the couch.  

Every time I had to get up when Ana's BG was low I'd walk to the kitchen and I'd hear "who's that?"  I'd respond "It's me mom." To which she'd ask "What's wrong?" Then I'd say "It's a low blood sugar give me a minute and I'll talk to you."  It's so bizarre to get up in the middle of the night and not have that type of conversation.

To quote my sister "I miss my mom."  I miss that unwavering support she gave.  I miss her telling me that things would be okay no matter how bad they seemed.  I miss having someone to vent to when I'm just ultra frustrated.  She was so much more than my mom and it's so hard to not have her with us anymore.  

A couple weeks ago Hallmark's Countdown to Christmas started.  When I got pregnant and was unemployed Mom and I would watch what few Hallmark Christmas movies were on.  Now there are hundreds.  I sat on the couch crying at the movies, not because of their sappy predictable heartfelt endings, but because I missed sharing it with Mom.

There are so many things in my life than Mom influenced that just aren't the same without her.  Over the summer I was asked to come back as an on call associate at Hallmark.  Without my mom becoming friendly with the GM (who is now the DM), I probably would have never thought to apply there.  It was hard to go back at first.  Hallmark was her favorite store in the area.  We have so many ornaments and I'm a self proclaimed Christmas geek, probably because of her.  But as I've been back 3 times now I find it healing.  I find items that we don't necessarily need, but Mom would approve of for the house and then get them.  

I'm sorry if this seems to rambling.  There are still so many things I feel I need to share about my mom.  Yes she could be a pain in the ass, but she was such a wonderful person and I wish everyone could know how blessed I was to have her as my mom.  

She supported so many people, not just Jenn, Alex, Ana and I.  She gave so much of herself to her friends, her former co workers, her church.  But let's face it she didn't take good care of herself because she was busy taking care of everyone else.  A habit that Jenn & I have a hard time breaking ourselves.

So Mom I pray you have a blessed birthday in heaven.  I know you're with Grandma and Grandpa.  Maybe you're enjoying chicken parmigiana (but let's face it you won't enjoy it as much as you enjoy Alex's), You're surely playing with all our dogs who crossed over the rainbow bridge already.  Maybe you're watching Hallmark movies, or just doing your word puzzles you loved so much.  I honestly hope you send a ton of female cardinals to visit us because then we know you're checking in making sure are okay.  We are okay, just sadder than normal.

Happy Birthday Mommy, I love you and I'll miss you forever.

When Grief Hits You

 Mom has been gone almost 4 months now.  I have my good days and bad days dealing with it.  I think I was better when I had full days of school to work.  The past 2 weekends have been rough emotionally.  

Last weekend was Hallmark's Ornament Premiere and I was asked if I would come back to work as an on call associate.  Being that it's always been one of my favorite times to be at Hallmark I jumped at the chance.  

The first day I was back was okay, but Sunday came and that's when my grief hit.  Alex had called me at the store to let me know what the plan for dinner was.  When I got off the phone I realized that for the first time in almost 12 years my mom didn't call me when I was at the store.  

To be honest I got annoyed that she would do it, at first it was to ask how to care for Ana, then as she got older it was "well when will you be home?"  And there was one Debut event where I had to drive home because somehow the dog got out.  

But in that moment I missed it.  In fact it was at that point that I remembered that in 2012 during Premiere I had asked the (then) manager for an application (in my sweats because it was an early morning event).  The girls at Hallmark have been so supportive the past 4 months.  Listening to me cry and vent during mom's illness and passing.  Sending me cards expressing sympathy and even helping me get through the 1st mother's day without her.

Later in the week I got to thinking last year at this time we were planning our trip to PA.  Mom always wanted to make sure we got where we were intending to go safely so when we would go, I'd have to call her.  During our PA trips she would get a little confused because we'd make multiple stops.  For example last year we went to Steamtown, followed by the hotel where we stayed and then Hersheypark.  

This year we're planning a couple short trips, but it won't be the same not being able to check in with her.  I will check in with Jenn but it won't be the same at all.

But anyways I just wanted to share how things have hit me this week, as I try to manage this thing called grief.

But Wait There's More....

 

Well when I blogged last month I was hoping that my gallbladder surgery would have been the last of the hits that 2024 was going to give to my family.  I was wrong.  This past weekend Anastasia wasn't feeling well.  I attributed it to the heatwave we had and the fact that we were outside for a good portion of the morning on Saturday.  I thought she was dehydrated, which with her diabetes is never a good thing.  Throughout the weekend she had good and bad moments.  When she really didn't improve by Monday I had told Alex to make a doctors appointment while I was at work.

Anastasia had a different idea, she told Alex that she needed to go to the hospital.  So he took her to the ER, turns out she had some sort of infection which caused her to go into DKA (Diabetic ketoacedosis).  We haven't seen her in DKA for 10 years (her initial T1D diagnosis).  Needless to say we were transported to Westchester Medical Center where we spent the next 2 days in PICU.  

She is tons better now, however now I'm back to being a hovering T1D mom (did you check your blood? did you correct your blood sugar?  Did you cover your snack?).  I'm so thankful for the pediatric ER that we have nearby, and for the nurses at WMC who got Ana back to health as quick as they could.  I'm also super grateful for the job I have, who even though I didn't want to allowed me to have the rest of the week off to take care of Ana and myself as well.  

I also had the weirdest, emotional and comforting dream while I was there.  Monday night during my broken sleep I had a dream that Mom was in the room, she was at the foot of Ana's hospital bed, her back toward her.  I started crying in my sleep and ended up waking myself up.  But I know without a doubt that she was watching over her.  

What's been going on

So it's been a while, almost 3 years honestly.  In that time Ana has been on a new medication for her crohn's which is actually working!  She lost her hair again (but not fully).  She joined a bunch of clubs at school and is just a couple days from moving up to Junior High.

2024 is a year I would love to forget.  My parents have been in and out of hospitals and rehabs.  I came down with Pneumonia in March.  The end of March sucked, my mom ended up passing away.  She was very sick and tired of feeling miserable.  

There are many things I wish I could have done differently preceding the passing of Mom, but I can't change it.

Saturday was the memorial for Mom and it was lovely.  Lots of friends and some family came to share time with us, but getting there well that was a trip in itself.

It started with me not feeling the greatest on Monday.  I woke up with bad vertigo which didn't go away until mid day.  Later on I had what I thought was gas.  This pain got worse as it came to Tuesday.

Tuesday evening I couldn't not sleep for the life of me, I kept crying God please just lessen the pain so I can rest.  I was convicned to go to urgent care.  They told me I needed to go to the ER.  So yes I drove myself there, and I was taken very quickly.

After lots of bloodwork, a chest x-ray and an ultrasound I had a visit from the surgical team at the hospital who told me it was my gallbladder.  

That put me into panic mode.  It was Wednesday, when would surgery be?  Would I be home in time for Mom's memorial?  I agreed to surgery, but the whole time I was worried.  

Originally surgery was supposed to be Thursday morning, then they said early afternoon, then they said Thursday evening.  I ended up being taken around 2:30 (after having a 2 hour potassium drip which was torture).

I think they started surgery around 4 ish, and then was wake by 8ish. 

I was still in alot of pain, but it was not the gas pain.  And I was super thankful that the headache I had all day Thursday from the lack of food and drink was finally gone.  

I rested and slept really well on Thursday night and then Friday morning despite me vomiting right before having breakfast I was told I was going home!  I rested alot on Friday and then ended up (to the surprise of many) at the memorial.

It's a week out from that ordeal and I can say I'm recovering well.  I got back to the surgeon's office tomorrow to hopefully have my drain taken out. 

I'm still tired and resting alot and the pain is lessening.  Hopefully this is the last medical crisis for a while.

A Bright Day for my Superhero.

 It's been a whirlwind of a few months.  Anastasia started her Remicade treatments at the end of March and it seemed to be working well, until we got to her dose that was 8 weeks apart. Then I noticed a regression.  

Guess what...according to her bloodwork she had no trace of the medication left.  So her next dose will be upped.  She is starting to lose her hair again.  Which means after 3 years we are going back to dermatology.  It was a fight to get an appointment but thanks to Dr. B they fit her in.

But this is going to be a happy post, Yesterday we all took a trip to the new Legoland theme park that just opened up in Goshen.  The best thing is that we totally surprised her!  

I had bought our tickets last month, got a bit of a discount thanks to Hallmark perks, but I didn't tell her at all.  The main reason is if I told her when we were going I would have heard her counting down or not sleeping until we went.

My plan to keep it a secret was simple.  I lied and told her we had a fun day planned with my friend Amanda and her son (sorry Amanda lol).  When we turned in she goes um...why are we turning into Legoland?  I was like oh we're at Legoland?  She says yes and Alex and I go, well we aren't meeting up with my friend we are going to Legoland!   

She was so happy!  We had a blast!

And yes it is a theme park so it is expensive but it honestly was worth it to have my daughter be able to be an excited kid for a day instead of having to worry about all the medical crap going on in her life. 

Tired of Waiting, but I will Wait Anyway

 3 weeks ago we got the bad news that Humira is not the answer to Anastasia's GI problems.  She is such a unique girl that her body is rejecting it.  So now we had to make the decision to start her on Remicade.  

The first step of this process was to see if she needed anymore bloodwork, she did.  So we took care of that on Monday.  Now we just wait to see if insurance will approve it.

Then more waiting.  Once we start treatment she will have a 2 hr infusion.  Then 2 weeks later another.  After that we wait 4 more weeks for another, then after that she ideally will have infusions every 8 weeks.  I pray it works.  I am tired of this issue.  I am tired of my child feeling so sick because her body is not right.

The only thing that makes me okay with starting this treatment is that Ana told Alex and I point blank (when asked) that she knew Humira wasn't making her better.

So now I ask anyone who reads this just say a prayer or send us positive thoughts, karma, or pixie dust (or whatever you believe in).

Ana has been through so much in her almost 9 years of life, I just want her to be well.