Monday, April 25, 2011

It's been a great day!

This past Saturday one of our neighbors put on a garage sale in support of Bevin…and raised $206.46!  It was such a thoughtful and generous thing to do for our family and I am so grateful!  We also received 2 more $25 donations from family which put us over our $1500 goal (we are at $1521 to be exact)!  I am SO ecstatic!  And there’s still 3 weeks to race day!

I picked up the race shirts on the 22nd, John and crew at Echo Shirts in Sacramento did a great job!  I LOVE how they turned out and can’t wait to see Bevin’s team wearing them in support of Bevin on walk day!

I went down the Arthritis Foundation today to get caught up on where things were with the walk (with everything going on I had to miss the meeting in February and then the last two were cancelled due to so many people not being able to make it) and turn in the cash recycling and garage sale donations and they asked me to think about letting Bevin be the 2012 Arthritis Walk Juvenile Honoree!!!  How exciting!  Of course I told them YES!!! J

About a week and a half ago a girl I went to high school with, Rebecca, contacted me and offered to make (and donate) car window decals for Bevin’s walk team!  Such a great idea and of course I loved it!  On the way to the foundation office I had to run by the house to pick up the donations, etc and saw the mail had come and in it was a priority envelope from Becca.  In 11 days she had made and cut 55 car window decals for us to sell for “donations” to Bevin’s walk team!  I brought them with me to show to the foundation and they loved them as well.  I can’t wait to get the decal on my rear car window tomorrow morning!

I am so honored at all the support we have gotten for Bevin, it really means so much to me and my family.

This coming Saturday we are ordering the GSP/Shields UFC fight and having a support Bevin event…the last fundraising event before the walk.  I will still be collecting recyclables until bank day.  I have to say, I’ve loved the support we’ve gotten for the recycle drive and I plan to do it every year to raise money for the walk, but let me say it is a DIRTY job!  And once the race is over I would be happy to never see another recyclable until next year when I start the recycle drive up again! J

Friday, April 15, 2011

Let's see, what's new...

Well let’s see, where to begin…

Bevin went in for labs this past Wednesday and as soon as we pulled into the Kaiser parking lot she started screaming “HURTS HURTS!  Go Bye Bye!”…my heart just broke.  Hayden was with us and couldn’t get enough of watching the lab techs draw his little sister’s blood.  The labs came back good; her Sed Rate is down to 13!  Her platelets were slightly elevated, but not enough to be worrisome.

This morning she had an eye appointment.  They still can’t do the slit test because she won’t cooperate, but so far everything still looks good.  Because she’s ANA positive, this is an exam that she will have to do every 3 months.  I do love the doctor, Dr. Ruben; he is constantly telling me how cute Bevin is…every mom LOVES to hear how cute their kids are J

Less than a month to go until Walk Day and the fundraising seems to be going really well.  Total we have raised $1,264!  The past two weeks I’ve had to bring in a jeep load full of recyclables, last week bringing in $45.10 and today bringing in $57.54.  Total we have gotten $285.35 in recycling donations.  I guess technically it’s more like $485.35; the Facilities Dept at my mom’s office donated $200 and we later found out the money was from the recyclables they had collected from conference rooms, etc after they were used for meetings and events.  They were going to plan a nice dept lunch, but when we put up the recycle bins they decided to donate it to a good cause.  I’m so happy with the cooperation we have gotten with this recycle drive.  I really thought we’d maybe get $200 from it, but we’ve almost hit $300 and we still have 4 weeks until the walk.

Bevin helping me take in the recyclables

We have a method to recycle sorting…I line them up…

I crush them all…

And the kids put them in the bags J

Team T-shirts have been ordered and are currently being made.  They should be ready soon.  I had some extras made for anyone who wants one.  Here’s what they will look like. 

I’m so honored at all of the people that have shown their support for Bevin!  It really means so much to me that there are so many people out there thinking of her.

Monday, April 4, 2011

Walk a mile in my shoes

My mom has always told me don’t judge anyone until you’ve walked in their shoes.  Lately I’ve been getting judged a lot, by a lot of different people for different reasons and all I can say is don’t judge me until you’ve lived my life.
I by no means have a horrible or terribly hard life, in fact I’ve been pretty fortunate and I am very thankful for that.  I’m not perfect and have definitely done things I regret, things I knew I shouldn’t have and things I’ve learned from.  I’ve also done good things and generally been a good person.  But in November of last year part of my life got turned upside down and then things with my grandparents went downhill and I guess it’s my turn to feel like I am constantly climbing uphill.  And like clockwork, whenever someone has a crisis in their lives that seems to be about the same time people decide to start judging you.

So for you people who judge me, let me give you a play by play of the last 19 weeks, 5 days of my life:

When we finally realized that Bevin’s limp wasn’t a fluke and wasn’t going to go away, that day I took her into see her pediatrician was probably the scariest day of my life.  I LOVE my kid’s pediatrician and he is the BEST at easing my mind, but that day, the way he was talking to me wasn’t his normal calming self.  He wasn’t necessarily saying anything to scare me, but he wasn’t fully reassuring me either.  And as he told me not to, just as any parent would, I looked up things on the internet and put myself even more into a panic that night waiting for her test results to come in.  As they started coming in (at 3am) I started looking the results up online and got even more panicked…everything I found pertaining to the one test result that had come thru was pointing at cancer.  I remember dropping Hayden off at preschool and just crying as I gave him a hugged worried sick while I was waiting for the Doctor’s office to open so I could call.  I remember coming into the office, my boss seeing the look on my face, asking me if I was okay and me just bawling telling him that Bevin’s Platelets where really elevated.  Finally all the test results came thru and Dr. Cutts called me and diagnosed Bevin with her JRA.  I remember this rush of relief coming over me, she didn’t have cancer, she was going to be okay!

Little did I know what all JRA would entail.  Now, Bevin is nowhere as bad as some kids who have JRA and her treatment is actually quite low compared to some of these brave kids I have read about, but the fact still remains, she has to have treatment.  She started on twice daily Naproxen and when that didn’t help got a weekly injection of Methotrexate added to the mix.  Now I know she could be on more meds, but having to give your 2 year old baby girl a shot every week is horrible.  Yes were getting used to it and yes it helps her, that doesn’t change the fact that no parent should have to have a child that needs constant meds.  There’s kids out there that have diabetes and get daily (sometimes numerous times a day) shots and there’s kids out there with cancer that have to go thru chemo and radiation.  And I feel for those kids and am thankful that Bevin doesn’t have to go thru all of that, but that doesn’t change the fact that my sweet little girl has to have a weekly shot.  This may sound wrong, but hearing over and over it could be worse, doesn’t make it easier.  Every parent wants their child to be healthy and when your child is diagnosed with something you constantly hear “it could be worse, it could be this or could be that” and of course I don’t want it to be anything worse, but that still doesn’t make her diagnosis any easier on us.

We were almost three months into her diagnosis and starting to get used to the idea, I had gotten involved with my local Arthritis Foundation and joined the Arthritis Walk and we even started fundraising.  I was going to embrace her JRA the best way I knew how, Bevin was not going to be her disease!  Then in February, my grandparents were admitted to the hospital a day apart.  Anyone who knows me knows how close I am to my Omi and Opa.  They watched me when I was little…when my parents were divorced and I would come out here to see my dad, they would watch me while he worked.  Omi was the BEST grandma anyone could ever have, she did EVERYTHING with me (and when I say everything, I mean it)…Omi is TERRIFIED of thunderstorms and hides in her hall closet when there is one, but when she took me to Disneyland when I was about 10 years old she road EVERY ride with me…Indiana Jones, everything…my mom wouldn’t even do that!  Omi rode an elephant with me with I was about 5 or 6…anything I could’ve ever wanted to do, she was right there next to me holding my hand.  And then there’s my Opa…when I was growing up he was still working so I didn’t get to spend as much time with him, but as I got older and had Hayden and Bevin he couldn’t have loved any of us more.  Hayden was his little Dude and Bevin his little Sweetheart.  I always remember thinking how lucky they were to be able to see their great grandchildren…now I know it was really how lucky my kids were to be able to know their great grandparents.  Omi and Opa watched Hayden and Bevin two days a week up until the week they went to the hospital…my grandparents were a part of my day to day life.

When Opa went to the hospital this last time, yes I was scared, but not as scared as I should’ve been…this last year he went to the hospital 3 times…so it was becoming more common.  But when my mom told me Omi went to the hospital the next day I got a little more panicked…we were going to Monterey Bay Aquarium that day and my mom told me to go anyway because there wasn’t anything we could do.  Then on our way home from Monterey, my mom called to tell me that Omi did have a heart attack.  In the next few days she was moved to ICU and we found out she had to have triple bypass.  Meanwhile Opa was at a different hospital and after one too many dying jokes with a “spiritual advisor” ended up with a Safety Attendant (nice name for suicide watch) in his room 24/7.  Of course we all knew Opa would NEVER kill himself, but he has a very dry sense of humor and when you don’t find him as funny as he thinks he’s being, he tells you what he thinks you want to hear, so you can imagine what he told the spiritual advisor.  Now knowing how hard it is having one family member in the hospital, imagine what it’s like having two family members in the hospital, let alone two DIFFERENT hospitals.  Just going back and forth to visit them and the stress of whether or not they were going to be okay took a toll on me and my family.  Finally the day before Omi’s bypass surgery Opa was released and we were so happy to have him home, FINALLY we could calm down a little bit.  Then Omi had her surgery and she went into cardiac arrest a total of three times, came out of the surgery on a ventilator and we were pretty much told she may not make it.  We couldn’t tell Opa how bad Omi was because we didn’t want him to have that kind of stress when he was already so sick.  In the meantime Opa started to go downhill and we were contacting his doctor to know what to do next and had to consider the fact he was very likely not going to make it to the end of 2011.

After over a week on the ventilator we were told Omi may have to have a tracheotomy and we finally told Opa how bad she was…and he just went even further downhill.  Finally Monday, Feb 28th, they took Omi’s ventilator out (and I will take just a tiny bit of credit for that…I got a little pushy with a nurse), but by that point it was clear Opa would not make it thru the week.  And considering Omi had literally just been taken off a ventilator we couldn’t tell her how bad Opa had gotten.  And the next day, March 1st, Omi’s birthday, Hospice came in and let us know Opa “won’t make it to see the end of tomorrow”, and she was right, he didn’t see the end of the next day.  He died the morning of March 2nd, making sure to make it past Omi’s birthday as only a gentleman would.  March 2nd was the HARDEST day of my life.  After I literally watched my Opa die (and I will say if I could do it over again, I would still have been there), we had to wait for them to pick up his body and watched them drive away, knowing he would never return.  Then I had to go get gas so my mom and I could do to their bank to get the POA set up so my mom could pay their bills…such normal things to do, get gas and go to the bank and my Opa had just died hours before.  After the bank my mom, aunt and I had to go to the hospital, get permission from Omi’s heart surgeon to break the news to her that her husband of 52 years had died that morning when she had no clue he was even that bad.  I can still see in my head my mom holding her hand, me sitting by her legs and Aunt Mannie at her feet while my mom told Omi everything that happened since she had been on the ventilator leading up to Opa dying.  Because Omi was still in the hospital we quickly had to switch gears from mourning Opa to being there for Omi.  And at that point start taking care of their accounts, bills, etc.  Opa had sat down with me and explained all their accounts to me so I felt that I was the one he had trusted with that job to make sure everything would be taken care of.  So I contacted every account and found out what I needed to do and had paperwork sent out so I could file the claim forms.  In the mean time we were called and told his ashes were ready to be picked up, so I left early the next day to pick him up and take him home for the last time.  I will just say, picking up a family members ashes is not something that should be done alone.  When they bring you that box all of the sudden it’s like a huge, red, final stamp  is being stamped on his life.  I buckled him into the passenger seat and drove him home, telling him he had to listen to my music because it was my car and telling him I drive like his wife (fast and brake hard) so this shouldn’t be new to him.  Then I brought him home and let him sit in his chair for the last time.
All the while this is going on I came down with bronchitis and pneumonia and I still have a job I need to go to and two kids that need to be taken care of.  Luckily I do have an understanding boss who was well aware what a big part of my life Omi and Opa were and was more than accommodating.  Finally around mid-March, things were finally settling down and that’s when everything starts hitting me, HARD.  I can’t sleep because every time I close my eyes I see Omi and Opa.  I tossed and turned so much it woke Rich up.  I would cry randomly (we went to Costco and the lady in front of us had a case on Ensure and I fully broke down over the Ensure, that was one of the only things Opa would and could drink at the end) and I couldn’t function during the day.  When you have two small kids, they come first, any feelings, sadness, mourning has to go away when they’re around, so constantly I was having to bottle up my feelings so they weren’t worried.  Because of all the bottling of emotions, as soon as I wasn’t with them (which was at work), I became completely useless.  The stress of getting all their accounts and utility bills moved into Omi’s name started to get to me, meeting with SSN to apply for survivor benefits on Omi’s behalf and then working on the slide show for his service, it all became too much and I didn’t feel like I could ask anyone to help me, Opa had entrusted me with handling their accounts, I couldn’t let him down.  I know that sounds stupid, but that was/is the last thing I could do for him and he entrusted me to do it.  Whether he choose me because he truly felt like I was the best person or if it was out of convience, I will never know, but that aside, it was me he explained everything to.

I contacted my doctor regarding what was going on and my lack of sleep and how I had to keep leaving work because I couldn’t function and she offered to write me out of work for two weeks on disability.  At first I wasn’t going to take it…Opa had already died, how was that going to help?  But after talking it over with Rich we decided that it might be a good thing for me so I took what the doctor offered and started my two weeks off.  I made use of the time, finished up stuff with their accounts, made a dental cleaning appointment and annual appointment for myself as well as a psychologist appointment, also for myself.  After talking to the psychologist she told me that a lot of what I was feeling was normal, especially because we haven’t had a service yet (which can help with closure).  She did tell me I needed to learn to ask for help and that I can’t take everything on all by myself, especially with all I had going on.  She told me this is the time to utilize friends and family.  She told me to delegate out what I was working on for Omi and Opa and let other people help.  As some of that stuff was relieved from me, the stress would ease as well and I would probably be able to sleep better.  I told her I wasn’t really sure I could pass off some of this stuff as my family was mourning his loss as well…she told me that it seemed like I may be the “hold it together” or “paperwork” person in my family and that’s all okay, but I was mourning just as much as everyone else and it wasn’t fair for me to do all of that by myself, but no one would know I needed help unless I asked.  I again told her I wasn’t sure I could ask anyone to help me (one of my worst traits is it is REALLY hard for me to ask for help, whether the help be helping me clean up or helping me by being there for me, I hate the thought of burdening other people with my problems) she told me if I didn’t start asking people to help me, not only with this, but in everyday life I was going to end up back in the mental health department, but because of an actual mental issue.  She told me I would eventually give myself a mental breakdown.  Needless to say I didn’t ask for anyone to help me with this stuff (and after I’d mentioned how much I’ve had on my plate and the reaction I received, I don’t think I can ask for help with this), but because I had the 2 weeks off at least the kids were at daycare/preschool all day and I had time to relax a little and get some of the stuff down without the other stresses of day to day life.

I went back to work today, 3 days earlier than I had to, I didn’t want to abuse the time off if I didn’t fully need it for the reason I original took it, plus the longer your off the harder it is to go back.  I am feeling a little more under control and figured I needed to get back to “normal” life sooner than later anyway.  First day was hard, which is weird because I’ve worked at the same place for almost 4 years, I can do the job in my sleep, but after everything that has happened the last 2 months I really realized how out of it I had gotten.

Now to the “moral” of this novel of a post.  I’ve gotten judged and commented to and behind my back from people, some of who I thought were friends, because of the “excessive” amount of time I’ve taken to deal with this because “hello, it was just her grandpa that died” and taking “disability to help cope with the loss of someone is a joke (especially after all the time she’s already had off)”, but don’t judge what I did or didn’t do or what I needed to do until you lived the last 4 months, 2 weeks and 4 days in my shoes (I’ll even let you do it in my super comfy pig slippers) because I didn’t just lose my Opa.  My daughter was newly diagnosed with a chronic illness that we were just getting a handle on, I was on the verge of losing both of my grandparents, but luckily Omi pulled thru, dealt with the stress of taking on all the after math of when someone dies (accounts, statements, bills, etc) on my own, trying to make a beautiful and meaningful slideshow for the service all while raising two kids who don’t care if I can’t get out of bed in the morning and have formed a stronger relationship with my aunt then we’ve ever had (the best thing that came out of all of this).  And Omi is still in the hospital, she will be in the hospital 8 weeks as of Saturday April 9th (which also happens to be the 3 year anniversary of when we received the keys to our first home).

Just because you see someone getting out of bed, getting dressed and what seems like they are going on with their life like normal doesn’t mean they are okay and doesn’t mean they don’t need a friend, it may just mean they have two kids who can’t wait for them to feel better and a job they can’t afford to lose.  And if definitely doesn’t mean they don’t need additional time to deal with the loss and stress of a family member.

So remember, when you see someone and think badly and immediately judge them for the stupid thing you think they are doing remember you don’t know all the details of the why, when and how, nor do you know what they are feeling.  We all handle things differently.  The same goes for our kids, when you see a child who seems a little behind for his age or a little girl who walks funny or is being held more than she probably should, remember you don’t know that families story, that the little girl has arthritis and it can be hard for her to walk sometimes or that little boy is on the spectrum and he may be a little behind, but he’s worked twice as hard to get where he is.

That person your judging may be having a harder time than you think.