Wednesday, November 9, 2011

Reality Check

Let's just say I got smacked in the head with reality today. I had the honor and privilege to accompany Suzi & Megan to the hospital today as Megan needed some blood platelets and I wanted to be there to give my friends a little support.  I've been saying to myself all this time that I can't imagine what I would do if I were in Suzi's shoes and if I would even be able to handle all of the decisions and heartbreak she has had to endure the past 7 years while fighting this horrible disease that is about to rip her daughter out of her arms and her life.

 Walking into the "Hot Unit" at Children's Hospital today as Megan held onto my arm and her mother's arm for support, we walked across the skywalk and came up to the check point where you have to get a visitors badge, it was then I realized that Megan was no stranger here at Children's Hospital and proved me right every stop we made along the way as "everyone" knew who Megan was.  Megan brought a smile to every one's face as they all greeted her with a warm embrace and a compliment on how great she looked with her long red hair, in which her response was a sexy raspy "Why, thank you"(in her most Mae West voice), and a sassy tug at her long red locks!  We then were escorted to a room to check vital signs and then brought to the "procedure room"  where they got the transfusion started .  As we were getting settled for our next few hours there, Susie, a P.A who has been working with Megan for the past 7 years was able to pop in a sit with us for a while and chat in great length with Megan and her Mom about how things are going, her pain management and what to expect at this stage in the disease. This is what hit home for me...hearing this woman explain to Megan that there wasn't much more they could do for her and that they needed to consider not prolonging the inevitable.  Now don't get me wrong, this woman was a saint and had a wonderful, calm reassuring bedside manner, she was as gentle with her conversation as anyone could ever ask for.  She explained to us, some pain management solutions and what to expect at the end of this journey and let me tell you, there was not a dry eye in that room, including the P.A.  Watching Megan react to all that she was hearing was wrenching at my heart and completely smacking me in the face and telling me OMG this is really going to happen and there is nothing anyone can do about it and then I felt this sense of panic come over me at that point and then realised how my girlfriend of 30 years must be feeling as a Mom...I lost it, and found my friend supporting me at this point. (which was clearly not what was supposed to happen)

 How does a single mom of 3 do this alone....completely alone?  How do you get up day in and day out knowing your daughter is dying and face the fact that it's only a matter of time that you have left with her? How do you manage caring for the other 2 children who desperately need you and your guidance too?  How do you find the strength to take a shower, eat, work out, clean the house, feed the dog, do the laundry & shopping, pay the bills and to top it all off, fight with insurance companies while taking care of a terminally ill daughter?  I can't imagine, because I, thankfully, have never had to do it.  But I do see my friend day in and day out doing all of the above that I am questioning and now after today I have to say that she is so  A-M-A-Z-I-N-G and has more courage, grace and strength then I could ever dream of and I now have a whole new respect for. 

(This is Suzi holding onto Megan's leg as we were listening to the P.A explain to Megan)
I came home a bit blue after the hospital visit and talked to my daughter Krysta about my day and about Megan, while shedding some more tears she asked me if I ever thank God that my kids are healthy and my reply to that was....Absolutely, as a matter of fact, I thanked God several times on my way home today for the healthy family I was blessed with.  And Krysta said, don't you feel guilty saying that? and I said, no...I feel thankful, because I truly am thankful and this experience along with today's hospital visit has put things in a whole new light for me and put me in check. 

So tonight I'm going to hug my kids a little tighter and a bit longer than usual and never take for granted any of the gifts that I have been given. And vow to be there for my friend with all the love and support she needs.  Like the Martina McBride song says "I'm gonna Love you through it".....I promise I am.   

Friday, November 4, 2011


Tonight was the scheduled night to take Malissa to Potowotomi Casino to play Bingo for the first time!  Krysta thought it would be a fun memorable belated birthday gift to give her sister. Malissa was excited to go and she even got carded by the security guard as we were headed towards the Bingo Ballroom and she gladly pulled out her ID card to prove she was 18 and can legally play Bingo now!
Boy, let me tell you if you have never played Bingo at this place do not go alone.... There is definitely a lot to know about the whole process, if you have been there then you know exactly what I'm talking about!  When we first got started it was a bit stressful because you have all these papers and bingo cards and tickets to fill out and then they start calling numbers and you have
to know what color card your supposed
to be playing on and what the design shape your supposed to be achieving and then they are calling "buddy" numbers and it's so confusing, you feel like.... OMG, what am I doing?  Thank God we were with a couple of veterans who helped us through this overwhelming experience because Malissa and I decided that if we weren't with the vets tonight that we were sure we would still be at the casino trying to figure it all out!!So thank you Krysta and Anna for your guidance tonight and I guess that's why you are both in the "Firekeepers Club" and we're not!!
This top photo was how messy my table was when I first got there and the bottom photo is Malissa first legitimate photo of her in an actual Casino!  The two of us managed to get are groove on the whole ordeal somewhere after the intermission and then we were good to go!! These photos were taken with my cellphone so I apologize for the poor quality!  I have a feeling it will be a while before I go back again because the more I think about it the more I'm convinced that I don't even need to leave my house to be that stressed out! LoL, just kidding, I will go back for sure!  Maybe next time I will leave as a winner.

Thursday, November 3, 2011


Okay, so I have to admit I am a wee bit nervous about having to have the long over due, dreaded MRI and MRA tests done tomorrow.  I never really got any special instructions regarding any prep before the tests so I will just go about my day tomorrow until its time to go! 

According to what people are telling me, these MRI machines are very big and extremely loud and that they actually give you ear plugs to put in because its so loud and sounds a lot like a Jack hammer.  I guess I have to put my head in a cage like Hannibal Lecter and it kinda locks you in place.  Now I don't have any claustrophobia issues but this might become a problem for me if I have to stay in this position for over 45 minutes! And not to mention I have to have an IV for the contrasting imaging stuff they need to pump me with to get the images.

For those of you who don't know why I am having this done, it was recommended by my mothers Neuro-Surgeon for myself and my siblings to be tested for Aneursyms because they are hereditary and it could easily happen to one of us.  Just being preventative because I certainly don't wanna go through any of what my mom has experienced this last year.
Maybe I should just stop whinning and be thankful for many things about this whole experience, for example: 
1. Thankful for having the insurance and the ability to have a very important test done. 2. Thankful for my Doctor who has pushed me into getting this done sooner than later. 
 3. Thankful that my Mom is still here to encourage me and tell me that all will be fine and that it's better to find out now before something bad happens to me like it did with her.
4. Thankful my older sister had her MRI done when she did and caught her MS before it was really really out of hand.

Although I'm pretty confident that everything will be ok tomorrow but still nervous about the whole thing none the less as well as results because you just never know.
I will say my prayers tonight and ask for everything to be ok with my test and trust that he will see me through! 
I will keep you all posted~ Nighty Night friends