It's been crazy here the last few weeks cause Zach had spring break (2 weeks), Kadin got sick (asthma, double ear infection & sinus infection), and just life with two little active boys. I think we are over the hump... Or at least I hope! Zach is back in school and Kadin is on the mend.

I had my yearly MRI result appointment with Dr. Kralick this week and he again confirmed all is well. Yeah!!! Good to hear! Even at three years, I see changes still occurring. I am so thankful for Gods continual healing grace. I again brought in fun treats for Dr. Kralick. So much fun!

Celebration Coffee - A tradition for Darren & I after the appointment

MRI DVD and skull tumbler for Dr. Kralick

Brain cupcakes for Dr. Kralick

Thanks again for the continued prayers & support.

Blessings

my how time changes

Three years ago Tuesday, I moved from ICU to PCU. It made me nervous & scared, but Nurse Linda reminded me that they wouldn't move me unless I was ready. So here I was, another step closer to home. That first night in PCU was interesting. My Dad had his first sleepover which came with awkward moments like multiple assisted trips to the bathroom to make sure I was fine. We survived with limited sleep, my frequent bathroom breaks & the lady next door who wailed all night due to recovery from surgery.

Well here three years have passed and again it's a sleepless night. Kadin began sneezing Sunday and Monday the runny nose & coughing began. Tuesday was more of the coughing and congestion. He struggled with his breathing. I began using our at home nebulizer and was able to give him two doses before bed. He slept about 3 1/2 hours before he woke up and started crying and screaming. He was definitely struggling to breathe. I had to restrain him so Darren could hold the nebulizer mask on him. I know it sounds cruel & I will assure you it was torture but as any parent whose had to restrain their child for any health procedure it's horrible for all involved. I kept reassuring him that nice deep breaths would help him. He cried & screamed & thrashed. I tried to be strong emotionally and remember my job was to keep calm for him. After a few minutes, which seemed like eternity, he began to relax and I was able to release my hold. I finally could wipe away the tears and stroke his head. He broke my heart through those first moments as he screamed he did want to do it (the nebulizer) and through the mask it sounded like he said 'I'm dying." You never want to hear this come out of their mouth! I instantly flashed back to my many moments like this in ICU. I remember the panic & fear I had when I was unable to breathe. Thankfully those feelings have lessened and they're not as nearly as intense. I felt like I was reliving this through Kadin's struggle. At the end of the treatment, he was again ready to sleep, in fact he was nodding off in the final moments of the medicine. I accompanied him back to his room and Darren & I decided that I'd stay there & attempt to sleep on the floor. No luck! Three hours later, Kadin and I were back in my room, the conflict was that the medicine stated it could be given every four hours. We weighed Kadin's behavior, breathing, trip to the ER & what they'd do when we finally got in. From previous ER/Doctor visits, we decided that the course of treatment they'd render would be another nebulizer treatment, so that's what we did. Again, I restrained our precious son who responded to the treatment similar to the one 3 hours before. We decided that we'd see how he did the next few hours & call for a Doctors appointment first thing. If anything were to change for the worse we'd be heading to the ER. Darren's the ER escort because I'm not confident I'd be able to handle the situation. My boys are getting so big & physically carrying them is hard. I don't compartmentalize as I once did and situations that are emotionally charged or uncomfortable for me tend to overwhelm me. So an ER trip would be hard because all Kadin wanted was Mommy and if Darren tried to bring him to the ER, it could possibly make him more upset & further worsen his breathing. Thankfully we made it to 8:00 when we called the Doctors office & snagged an appointment for 8:30. We quickly dressed the boys and all four of us jumped in the car & headed toward the Doctors office. A few minutes after we arrived, we  were shown in to see the nurse who listened to Kadin and concluded that he'd need another nebulizer treatment and they'd check his oxygen levels before & after.  If that treatment did not open him up enough then they'd do another breathing treatment with a steroid.  Well, he got both.  He is such a polite & nice little boy despite the fact he feels terrible, good thing his lungs said the truth cause if you were going off his behavior they'd have just sent him home. So, we came home with instructions to continue the at home nebulizer treatments and a liquid steroid 2x daily for 5 days.  We have to bring him back this weekend for a listen assuming all continues on the right track.  Today, a day out, we have hope its getting better. He slept through the night last night and is somewhat back to his spunky self.  A few more days of treatments and he'll be back to new.... just in time for his April testing at the Allergenist office.  Will let you know how that goes....Thanks for listening

Blessings

Kadin & I in his bed - tough night

Zach being a goof in the Doctors office while Kadin's doing a breathing treatment

Sitting on Daddy's lap to do breathing treatments

heart matters

I'm not sure how to start this! My brain feels discombobulated! Two many things pulling my thoughts, energy, attention & focus too many ways. Like this is no different from anyone else, right???

So, in an effort to get them more organized, I thought I'd share them.

First is the one the really pulls my heart strings. My friend Jitana, also my Nurse Case Manager through my recovery, contacted me Friday afternoon & told me that her friend was at the ER for a brain bleed. She also told me that this was a young woman (28) has a four month old. My heart instantly started pounding & my brain spun into a whirlwind, what can I do? From here? Answer: Pray and so I did. I contacted some close family and shared the request with them as I knew they'd know how to specifically pray for this woman & her family. On Saturday, Jitana told me that they had found a large tumor in the middle of her brain. Surgery was plausible, but Doctors weren't estimating they could get the entire tumor. Even so she'd be left with speech & cognitive deficits. I did the only thing I could do, I updated the prayer request & continued praying. I haven't heard anything in a few days, but I expect to today. Throughout the day my mind has been consumed with thoughts & prayers for this young woman & her family. Prayers would be appreciated! I know My God is powerful and capable of much more than we can ask for. I know He is a Mighty Healer and is present with this young lady & her family now. May His glory be evident in all things that transpire.

The other huge thing rattling around my brain is harder for me to express. Yesterday was a day full of highs & lows for me. We took Kadin to his first theater movie. He did fabulous! The only bummer was because of his allergies, he didn't get to fully enjoy the theater experience (popcorn). Thankfully they did have junior mints!!! After the movie, we decided to go sledding. When I say 'we' it's the boys & Darren and I'm there to watch & take pictures cause I can't maneuver up &down the big slippery hill. I got up to the top of the hill & down again without falling. Thank you Darren for your ever present help. But then as we walked across the playground, I met my match. I was trying to navigate the deceptively slippery terrains with my no traction fake Ugg's so that Darren could pull both boys behind him in the sled. I got about half way across the playground and fell down. In an attempt to pick myself off, brush off the snow and move on, I forgot to allow my brain a second to process what happened. Instead of proceeding with caution or grabbing a hold of Darren's outstretched hand, I plowed forward.  Can we say PRIDE issue???? Yep! I was only able to make it a step or two before my legs became entangled again and tossed me back to the snowy ground like a wet rag. I felt so many emotions boil up in me. Anger, annoyance, frustration, disappointment, fear and sadness. Instead of focusing on the good that'd happened so far in the day, I was instantly plagued by my failure. Hindsight bias is always 20/20 and I know now that anyone could have fallen on this slippery playground, in fact Darren almost fell when we first arrived. The act of failing didn't shout out to everyone that I couldn't walk very well or that years earlier I had to relearn to walk. No one stared, gawked, pointed or ridiculed me. The only judgement passed about the situation was by me. Swallow. I think I need to learn to give myself some grace, finally. It won't be easy, but I'm going to try and remember we all fall from time to time or we may sound different, but I don't need to always be so focused about expecting someone to point out what makes me different. I need to accept we are all different and without accepting myself wholly, how can I expect anyone else to? Like I've heard & repeated many times : God doesn't make mistakes.

Blessings.

3 years.... Already

Wow! I can hardly believe it. Three years ago Sunday, I was being ushered to the hospital to find out what was wrong. I walked to the awaiting ambulance (w/fireman help), no sirens and no lights. I talked with the EMT the whole way to the hospital about my husband Darren who had been his patient a few months before when he broke his leg during a men's league hockey game. I apologized for wasting their time in picking me up cause I'm sure others needed their aide more than I. I arrived at the ER minutes later & I think I walked into the ER. I was escorted to a hospital bed and I got on and the last thing I remember is one of the EMT's asking if I felt alright and I responded with 'no, I don't feel so good.' Boom! Grand Mal Seizure and then blank until bits from a few days later. I relive the moments before & in the days that follow rarely. I'm not sure if that's a coping mechanism or because of the time passed and I've begun to feel somewhat removed. I do know that this years it's presence is affecting me and I'm not sure why. Every time I hear a reference to Fur Rondy, the Winter Celebration that occurs this time of year, every year, I'm instantly transported to my ICU room (#2) that Nurse Shamese moved me in so that we (my family, cause I was still immobile) could enjoy the Fur Rondy dog races (mushing). In the years before, I hadn't particularly paid attention to Fur Rondy other than to note that the Empty Bowl took place the week after it, now, I feel strangely connected to it. Saturday night after Zach's hockey game, we loaded our family into the car and rushed down to Ship Creek to catch the Fur Rondy Fireworks. Things did not go as I hoped which made an even deeper impact to my wounded heart. I won't bore you with the details, it was just stupid stuff, but it impacted me still. You see, I'm trying hard to make positive memories out of a life shattering time.  I'm not willing to let the tumor win!  Sure things won't always turn out as I plan or hope, but I want my boys, my husband, me to have great memories of something fun we did together during this time, not to relive the fear, anxiety, sadness and uncertainty that my sickness covered us with. I win/ WE WIN! Ha! Take that Hemangioblastoma!

In all of it, I'm sure of a few things:

God is in complete control!
He was present through it all and He saved me!
My husband is incredible & he loves me so much (the feeling is mutual Babe ;) - I'm so thankful for you!
My boys are angels. (True they don't always act that way but, they warm my heart)
My family is amazing! Your sacrifices on my behalf are not forgotten. Thank you for loving me that much!
My prayer warriors are a complete blessing. I know He was listening.
My friends have been outstanding, supportive & encouraging.
My Doctors, Nurses & Therapists were hand picked.

Thank you for being part of this journey with me. May God be glorified in it all!!!!!

Blessings

Happy Valentine's Day

This post wont be gushy or filled with flowery remarks.  I'm really not that big on Valentine's Day. Maybe it is because my birthday is a few days later or that everything is hyped up and overpriced. I don't know, I would rather my husband surprise me with flowers on another day that isn't earmarked for couples.  In fact, this year we decided to do a dinner out some other day and no gifts.  Well I fudged it a bit... I got him a buy 2 get 2 Snickers (his favorite) at the store this morning and quickly jotted something about his many wonderful qualities  I especially love him for all the SNICKERS he gets out of me.  I do truly love my husband, I just don't need a special day to tell me so.  I will tell you it was quite comical this morning at the grocery store watching all the men frantically looking for the right card, chocolate & flowers.  It was great people watching for sure!

I did however grab something small for the boys (books ;) and some donut holes that I attached a note to that said DONUT you know I love you a HOLE bunch! Thank you Google Search!

I also did some fun valentine's for Zach to take to school for each of his classmates.  Its a glow in the dark bouncy ball that says - It's been a BALL getting to know you this year.  Oh fun!

I hope you have a great day today! May you take the time each day to tell those you love just that.

Blessings.

My baby is 3!

Happy 3rd Birthday Kadin!

This past weekend, we celebrated Kadin turning 3! I can hardly believe he is already that old, but it's undeniable. He is really into superheroes now, so what a perfect theme. We all dressed with our superhero shirts and got ready to party. It was great to see others donning their superhero garb as well. We had a build your own 'hero' sandwich, chips, watermelon, veggies & dip, punch & of course cake. I had planned to do Thor's hammer & the symbol for Green Lantern, but that just didn't work out. The night before the party, my Mom baked a vanilla bundt cake for me to decorate. It was great to see friends & family, but we missed those who couldn't be there. Kadin was blessed with great gifts that he is already enjoying. Enjoy the pictures.

Blessings

Our Family - Superhero Squad

Captain America bundt cake

Thor Hammer cake

'Hero' Sandwich makings & other food

Favors

Decorations

Super Kadin

Spiderman

Batman & Robyn (Robin)

The full Superhero Squad

Humbled

Since my last post, I've been given an incredible gift. My last post titled Ugh!!!! talked about my feelings regarding the deficits I still have and how I felt recently at a preschool advisory committee meeting. This meeting occurred Monday night and since then I've been overwhelmed with kind, caring, loving, encouraging & supportive words from some wonderful friends, but a whole host of strangers (Thank You Rachel)!

Each time I post a blog entry, I link it on my Facebook page. Over the last few years, I've questioned whether or not I'd continue doing so. I decided to and I'm thankful I did. Yesterday, I posted my last blog entry about the Monday night meeting. While I was doing it, I questioned whether or not to link it on Facebook. In the end, I did share it while thinking 'no one reads this, so it won't make me appear to be having a pity party.' I was wrong about someone reading it! A friend since Junior High read it and gave me a humbling gift. Rachel took the time to pay honor to me on her Facebook page & to encourage people to read about my story. Her words were beyond gracious and over flowing with love & support. I never imagined that anyone would respond to her post and to me directly. What beautiful words that certainly refreshed my spirit and nourished my soul. I recognize Gods steadfast hand in this as was apparent in which people shared scripture, faith, love & kindness with a complete stranger (me)! What a gift! I so appreciate the insight, advice, encouragement, support & kindness shared.

Below is Rachel beautiful tribute that brought me to tears:

This is long – I know, but please take the time to read. ♥ Rachel

Today I am honoring not only a friend, but a woman of God, and inspiration and someone who continually leaves me in awe. She is the mother of two sweet boys.. shortly after having her second she found out she had a brain tumor. Her journey has been incredible… I challenge you to read her blog (.http://bussjessica.blogspot.com/2010_07_01_archive.html).

My questions to you is – what would you do? I’ve asked myself the same question…and I don’t know. Her courage, her faith and her love for her family and God is a true inspiration. I hope her story touches your heart and lays upon your heart that life is too short. Live, love and try to find the good in life even in the midst of challenges. Below is just one blog of many Jessica shared that touched me. Jessica Boyd Buss, as a mom, a wife…tears come to my eyes when thinking of you. I'm humbled by your strength and faith.

Jessica's blog - Thursday, July 08, 2010 Exhausted
I am exhausted. No one told me that having a major operation would still continue to wipe me out months later. I shouldn't complain because I have less problems than many of the people I see at therapy. I am just grateful to be ALIVE! I was thinking about that today and how blessed my family and I are because I am here. Sorry for the morbid talk, it's just things like that hit you every once in a while, and they are better to confront than not. I am so glad that my parents didn't have to pull together a funeral service, that my boys didn't have to whisper goodbye to me one final time, and that my husband didn't have to imagine life without me. I of course am grateful for my second chance at life and I intend to use it for good. I started this blog so that I could share my thoughts and feelings with those that I care about and invite them to respond back how my experience in turn made them feel. I have been beyond blessed to have my family and friends around me during this time and for their constant love, support, encouragement, and prayers. I will never forget what I felt in that hospital and how desperately I wanted to come home and be with my family. I look forward to family dinners and events where I can finally feel 'normal' again. Toodles for now, I have to make some of my own creation chicken enchiladas. Some day I will explain the food obsession... but for now - God Bless! — with Jessica Boyd Buss.

I'm including some of the comments too as they certainly made my heart swell and the tears flow freely.

What an inspiration. Thank you to Jessica for a huge reminder of how wonderful life is and how much we all have to be grateful for. -AR

I am truly inspired by Jessica. Her story is a reminder to us all how special life is and all of the things we should be thankful for. I am truly thankful for my health and the health of my loved ones (family and friends). I will try to keep Jessica's story in mind when life throws me curve balls. -AH

What a truly inspirational story. God works in incredible ways. He knows how strong we are and what we can overcome. Thank you for reminding me to never give up on life and to put our lives in his hands. Remember God is behind you everyday of your life! -KTH

Jessica Boyd Buss I know that I have never met you, but your life is truly inspirational to me and I hope to those mothers out there who find themselves in days where they just don't feel like they can take another cry, whine, whimper, tear, or scream. There are those times in our lives, some of course having larger challenges than others, that we need to seek the guidance and glory and the one who is truly in charge...GOD Himself. He really does know what he is doing when he gives us triumphs, struggles, glory, and sadness. He never gives us anything we cannot handle. You have come out on top! I am sure there must be a million thoughts that race through your mind on a daily basis of "what ifs" but now you are at that pivotal point...you need to look ahead to the future and all the glorious things you get to wake up and see, smell, feel, think, kiss, hold, hug, snuggle, tell you love, and watch grow. You do get that amazing second chance to make an impact not only in the lives of your children, but in the lives of others. Who know what you will do, where you will go, who you will touch, but when you do it will be truly amazing, encouraging and captivating! Thank you for allowing others to journey with you through this process...I will be listening and reading. God Bless. -BW

I'm reminded everyday that I wake up to breath and take a moment.... One of my dearest friends has had a major Hand delt to him and his family and it had shook me to the core. I have never Lost anyone close to me or been to a funeral. This last year has put me to my knees and I find encouragement everyday through finding words of Love and God for my dear friend.. It's opened my eyes so wide there's not one minute that goes by that I don't think the next minute might not be here.. OMG what would everyone do what would my family do what about all the material Shyt I have collected.. 
Yep I'm done Memories are what I want to collect Love Joy and a Happy Heart.. 
So Jessica I have found this for YOU 
 Shared For you Through Him

To one who has faith, no explanation is necessary. To one without faith, no explanation is possible. Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart. God promises a safe landing but not a calm passage. Let Gods promises shine on you.... One Day One Breath at a Time, One foot forward... The people you need are the ones who fight to be with you, the ones who show love and support no matter what...... Fight Your Fight and Fight it Hard - JM

This reminds me of something I recently read - 
It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had. Elisabeth kubler-Ross 
Xoxo - JC

Jessica your story is truly humbling. As a mom, friend, co-worker, parent at a daycare I would be truly honored to have someone with your knowledge, creativity and strength as a part of our advisory committee, I really hope you stay. I pray you continue to see God's glory in your journey.
Be strong and Courageous ~ Deuteronomy 31:6 - AMP

Rach, I not only read what you posted, but I'm in such awe of your strong beautiful friend that I read some of her blog. What an inspiration! Jess, I am sure you have had many days behind the scenes when you had no other response than to cry. But the courage and faith in which you handled the situation are truly amazing. The fact that while dealing with your own situation you can set your worries aside to take a moment to think about other people's sicknesses and misfortunes is amazing. It's something that can't be taught, as it comes from the bottom of your heart. I wish you and your family the best of times, because you clearly deserve it! 
Thank you for sharing Rach! Love you! Xoxo -CM

What a beautiful soul. I have always believed that people like Jessica go through incredibly difficult trials for exactly what she is doing, she is sharing her inspirational story with others so that they have the strength to keep going through their own trials and tribulations. Such an amazing gift from God! Thank you so much for sharing, I am grateful for Jessica's message and you Rachel, for sharing her message. You've helped reinforce my faith that God has a purpose for each person he brings into your life! I can't thank you enough, I am inspired! -JM

 Not very often - not often enough - we all probably see something, read something or somebody will recount something that lends perspective. I think perspective is what we all lack most of the time, at least I know I do. I think I have bad days, but really, do I? Do I? What I've read here gives me some real perspective, and tells me my bad day is absolutely nothing. I like to think I have a positive attitude most of the time, but its nothing compared to Jessica's determination, belief, faith, love and will to live. I'm grateful for the chance to read your story, and for the gift of perspective it's given me and the inspiration to be a better person. -CM

 I love that stories like this come into my life when i start to doubt and question the nature of humanity. The media plays up horrors and feeds these fears that we are surround by evil, just waiting to step in and devastate us. But the real stories of life are not random acts of violence by a minority, but the pure beauty and truth of the strength of the human spirit, family, and most importantly love. Love of mothers and sisters and husbands and wives and children... And our wonderful friends that we are blessed with. Thank you for lifting me up with your strength and beauty, because you have restored my faith. Every person who battles cancer is an inspiration in determination... And a hero to me. -LB

What a true inspiration! Her story reminds us what is really important. Thank you for sharing and bring us all back to reality. Whenever I am holding on to something and struggling. I always remember Philippians 3:13 “Give no thought to what lies behind, but push to what lies ahead” We can not dwell on the past, but look to the future. These words have helped me push forward in so many situations. God Bless…. - LY

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. " 2 Cor 4:17 ...I read this today and it made me think of the life Jessica leads and how we should all react to any circumstances we are faced with. Thank you for that reminder. -ABJ

What a beautiful spirit she has. Every mother knows that this would be there worst nightmare. But Jessica is truly an example of strength, determination, and faith. It does bring tears to your eyes to know that a loving mother was so close to having to say goodbye to her sweet children and husband. Jessica, I don't know you but I will think of you every day. Your love for life has lifted my spirits, God isn't ready for you yet  Hug your munchkins for me, and I will hug mine a little bit longer and a lot more often. Thank you for sharing your story. You are beautiful! -NW

What an inspiration you are Jessica! Thank you for sharing your journey. Thank you to Rachel as well. As I read several entries of your blog, I was really touched by your loving spirit and your vulnerability. You are amazing. As for your most recent entry, it's okay to feel upset, challenged, frustrated, etc. It's ok not to be strong all the time. You are strong and you've proved it. You are capable and you're doing a great job. But that doesn't mean you don't wish it was different sometimes. By saying that and feeling those feelings you are actually honoring yourself, not being lost in self pity. You are grateful for what you do have and you live that every day. Through your blog and your life, you are sharing that with others. What a gift! Stay on the board. You were asked for a reason and you have a lot to give. Also, it might not have been as bad as you thought anyway. I get nervous with public speaking and I get really self critical about it. I realize your situation is different and I don't mean to minimize it in any way but the similarity is that most people are more focused on themselves and don't really notice what we think they do. And who cares if they did. You're there, you're making a difference and not being perfect is ok. That's being human. You've endured more than your fair share of difficulties and you are a gift, just as you are. Thank you again for putting yourself out there. Thank you for being you. - HGB


Today, I still don't know Gods plan for me, but I know He has one.

Today, I'm still not perfect (honestly I wasn't ever), but He doesn't ask me to be.

Today, I still may have deficits, but if I'm willing, I can ask God to use me, even in this state.

Beyond a doubt, I've learned:

Proverbs 31:8

Speak up for those who cannot speak for themselves, for the rights of all who are destitute.

(Doesn't say anything about whether you are able to speak or can do it eloquently)

James 1:2

Consider it pure joy, my brothers and sisters,^[a] whenever you face trials of many kinds,

Philippians 4:8

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Philippians 4:13

I can do all this through him who gives me strength.

Proverbs 3:5

Trust in the Lord with all your heart and lean not on your own understanding

My brain sister, Jessie, who I went to high school with also had brain hiccups and she had something to say to my initial posting of the Ugh!!!! blog

Any one who doesn't accept you for who you are, is missing out! Just because you talk and walk differently, doesn't make you any less capable of doing anything they can do (heck, you'd probably be better at it.) I know (from experience) that sometimes most of the fear and complication is in my head, and I can only assume that you are experiencing the same thing. I refuse to be babied because of my "medical history" and insist that I be treated like everyone else. I will decided when I can or can't do something. With that said, I think you should do what ever feels right to you. If you simply don't want to be PTA mom, then don't!!! But do not let those people make you feel any less of the amazing person that you are because of your "complications". Everyone battles with something, yours are all the more inspiring because your differences are on the surface for all to see and hear. You are an absolutely incredible person, don't ever let anyone make you feel anything less! They can learn a lot from you.

Thanks Jessie for always providing a listening ear on something that is often so foreign to others. 

Many Blessing to you all. Thank you again!