Saturday, December 31, 2011

Keep Moving Forward


It was New Years Eve 2010 when it all changed! Throughout this process of healing, I've seen many ups and downs. I was told by my Physical Therapist LeAnne while I was still in ICU, that Rehab would ebb and flow, and it's done just that! Flashback to a year ago... we (my Speech Therapist Anne & I) were trying various food options in an attempt to get swallowing started. I had begun to take sips of beverages, but they had to be cold or hot with lots of flavor. In having all these prerequisites, we hoped that my brain would receive all the messages sent and begin remembering what to do. My Mom had heard that I was trying slowly with small bites of ice cream and she stopped by with the miniature/single serve Haagen Dazs containers in some of my favorite flavors. On New Years Eve, with 2011 approaching, I gave one of these mini containers a whirl. I can't remember the flavor now, but knowing me, it was probably coffee (side note - they make the best coffee ice cream). I slowly took small bites and hoped it would go down. I was having luck and before I knew it, the entire mini carton was gone and I hadn't aspirated at all. It took me a long time to eat it (3o minutes), but I ate it. Praise God! I had renewed hope that I would eat again. I didn't know all the details, but I knew I was on my way!!!!

2011 will always been in my recollection as the year of eating and I've just done that. The picture above is the hot Mocha, Anne, my Speech Therapist, brought me for practicing. No problem, I can practice all day! This year, I have eaten so much great stuff. It has been nice to be part of the dining experience once again. Not being a part of the dining experience was incredibly difficult for me... I put on a happy face and just sat there while those around me ate. It was painful and at times I just wanted to leave, but I didn't. My family struggled with the issue with whether or not to set a plate for me. I'm not sure I would of liked it either way, it all served as a silent reminder of how different I was. When I did start eating again, the amount/type was fast but my process was so slow. Everyone else around me was done with their meal and had cleared their dishes and left the table and I was only on bite 4. This was harder at particular times too. At my Brain Party everyone was so encouraged I was eating that the pressure of it all was intense. Needless to say, I ate when everyone left. Still I only eat in front of certain people (family & very close friends), I almost never eat out and if I do, its a rare & special occasion. It all has to do with pressure & fear. I know myself well enough & I know my swallow and all its components intimately, I just worry about how people will handle my new swallow or me aspirating. I pray you never gain this in-depth insight for yourself and that it all remains mechanical for you, because the latter STINKS!

Current Update - Swallowing - I eat just about everything! I have the hardest time with beef so I tend to avoid it or I stick to hamburger. I love SALAD, which was one of the things Anne said to me that if I nailed that, I'd know I was healed. I took that as a challenge. Stuff still intimidates me and I usually try food at home before I'll even consider eating it out. I've gained all my weight back ;( boo hoo... so that sets up my 2012 goal of using my many gym trips to get myself toned.

Thanks again for the prayers you have covered me in 2011. Please keep them coming.

Happy New Year! May you feel God's incredible presence in your life in 2012. Keep tuned I'll be sharing His many ways He makes His presence known in my life.

Blessings

Wednesday, December 28, 2011

Blessings






Last week I was blessed to become an "auntie" again. She is the little girl I always wanted but couldn't/shouldn't have. I am so amazed at how precious she is. I'm in awe of my sister for sticking to her birth plan and enduring labor naturally to welcome this little angel into our family. I'm impressed at how both Kyle & Jaime have moved into parenthood. What a joyful spirit Lily is already.

It's been so cute to watch Zach's excitement for Lily. He anxiously awaited her arrival on her birth day. He couldn't wait to go to the hospital. When she cries, he sings her his own lullabies. He asks to hold herald when he can visit her. Kadin understands there is a baby, but doesn't seem to pay it much thought after that. The other day, Darren was nicknamed "baby whisperer" as she instantly calmed in hoist arms. I am just humbled & blessed to 'be there' for my sister. I am SO PROUD of her! The journey into Motherhood is hard. Sure it's full of joyful moments, but it's speckled with tinges of sadness, disappointment, confusion, and frustration. Despite these tough moments, she's hung on with excellent help from Kyle, and together they have persevered. True this is just the beginning, but it's a great stride in the right direction.

Because this is the final week of 2011, I've been thinking of what I want to focus on in 2012. I'm writing down my goals so that I can be reminded of them daily.

May you have a happy, healthy, and safe entrance into the new year!

Blessings!






Saturday, December 24, 2011

Reflections

I've tried many times to begin this post, but I always get stuck. This month has been so full. Full of activities and full of emotions. I've been busy with Christmas shopping, letter/card compiling, Christmas Preschool program, cookie baking & sharing, family basket gathering, AMI vendor basket stocking, and much more.

In light of all this fun, I also had the opportunity to be involved in more emotionally affecting activities. I did my yearly MRI this week and now am playing 'the waiting game' until I see my Neurosurgeon after the first of the year. I snuck a peak at the scans and with my minuscule knowledge of brain scans, I liked what I saw, but I've yet to get the definitive interpretation. so I'll wait to share pictures and such. I have an awesome baked goodies this time that I'm so excited about and I'll share pictures of that too.

Side note: About a week and a half before my scan, I had a very detailed dream. I dreamt that the whole (I call the Nile River) was healing up. At my last scan, this past January, my Neurosurgeon indicated that I would always have this whole. We will see what he says in a few weeks based on these new scans.

Honestly, I didn't think about this test much until the day before and then I allowed myself to hear the fears/concerns of others and internalize them. I thought a lot. Visions of my husband raising our boys without me were heartbreaking. I couldn't or didn't want to imagine those precious boys growing up without me. Selfishly, I plead with God that this wouldn't happen. In my attempt to handle this, I wrote a letter to my boys. I won't share it because it's too personal, but it's what I'd always want them to know if I wasn't around to tell them. The hard thing in looking at your own potential mortality is making such people REALLY know how you feel. Words cannot do an adequate job on relaying this information, but if something were to happen, I'd rather have something written than let them wonder. Let me tell you that this is not fun to think about at all. Before all this happened, I put the matter of dying out of my mind. I knew it would happen some day, but I assumed it was a long way off and didn't require much thought. God has placed examples of this fallacy in my path, especially lately. Just because your Christian, a Mom/Dad, nice person, hard worker, educated, giving, loyal, etc. you aren't guaranteed anything. My advice: Live life to the fullest! Above all, embrace God and the plan He has for you! Love your friends & family fully. Forgive & forget. Seek to be forgiven! Take care of others! Be the best you can be! In trying to do this, I've worked really hard the past few months, with Gods help on dealing with my anger about what happened and THANKS be to Him, it's getting better. Now I think, yes, it stinks that this happened to me, but how can I use it to help others? God has begun to answer this and placed incredible people in my life that have medical struggles as well, and it has been such a blessing to talk, listen, laugh, feed, and encourage them. What a blessing God has bestowed upon me! I think as I was growing up, I wanted to be a run of the mill Christian where I did what I felt I needed to do, but now, I'm open to how God is and will use my experience to glorify Him and hopefully provide comfort, support, love, and encouragement to those who need it.

I'm looking forward to the upcoming months. I get to help welcome a new baby into the family (she was born yesterday the 23rd :0), I have my follow up appointment on my MRI, I get to celebrate my son's second birthday and my second tumor free birthday! Oh life has changed so much and I'm so grateful to be part of it.

Blessings!

Saturday, December 10, 2011

Fabulously busy!

Life is GOOD!

I know that many have uttered how busy they are, especially during this time of year, but I'm thankful. I am grateful I have a lot of things pulling me in many directions because it makes me feel NORMAL. I am taking more commitments this year than before my brain tumor resection, who would've guessed? I'm so thankful for all those commitments and what it means to me. I've been blessed by each commitment in some form or fashion! So here's what I've been up to:


I've been able to cook Christmas goodies with one of my sisters to then share with my husband's company. Nothing better than homemade treats.

I got the opportunity to stuff totes with my sisters and Dad/Mom 2 with the basic necessities one might need to set up their own place after receiving aide from social services. The past few years, we've selected someone or an organization to sponsor during the holidays and it has been a joy to do. It has been so rewarding & fulfilling to help those in need. It's what Jesus commands in his word, right?

I got the incredible privilege of bringing dinner to a friend's Dad who has Lou Gehrig's disease. It was so wonderful to hold his hand and chat. We laughed, cried, and just enjoyed the company. I even got to try my hand at making Gumbo for them, which was fun because they're originally from Louisiana. I am in awe of Mr. Glen & Ms. Toni! Life has handed them a terribly difficult path and they're facing it with courage, faith, strength, and love. Such incredible people and I'm blessed by them. I sure loved the big bear hug too!





I also have volunteered (via Darren) to do the Christmas baskets for AMI and they're almost done. It has been great to get creative again and to feel useful for more than just a Mom/Wife.


We also got to visit one Grandma at work where Santa and his helper had stopped for a quick rest. Zach was super excited but became shy when Santa pulled him to his lap, but he had practiced asking Santa for specific gifts, so he did great. Kadin could have cared less. He wasn't so sure about his Dad handing him off to a stranger, and this Momma's okay with that. Their cousin Morgan was there too so it was great to have them all together.


Praise: After almost two years, I'm starting to drink water. I know that sounds weird but if you've heard me or my speech therapist talk about it, you'd understand that water is the toughest for me to swallow because it moves so fast. I've had to chill/heat, flavor, or carbonate any drink in the past to successfully swallow it. but now, I'm reintroducing water. I remember when I first was home and able to swish water around my mouth and the incredible flavor it had. I wanted it so bad and now I can enjoy it. Sure, I'm still a little cautious, but another hurdle is being mounted. Thanks be to GOD!

This holiday season, I hope you get a chance to slow down and give of yourself, trust me, the reward is amazing!

Blessings!

Sunday, December 04, 2011

Randomness in my head

Soul Surfer - Inspiration

Have you seen this? I'm obsessed! What an amazing story. Bethany Hamilton is out surfing one day with some friends and a shark attacks her and rips off her left arm. She survives by Gods grace and goes on to show the world how strong, courageous, resilient, and determined one can be. Even though a teenager, she looks uncertainty in the eye and takes on the incredible journey of learning to surf with one arm. I am draw to her spirit, but mostly in her reliance on God. She displays a mindset that I've tried to embrace throughout my journey, acceptance not questioning. If you haven't seen it, watch it, it's definitely worth 1 1/2 hours of your time.

Nurse Linda


I went back to Alaska Regional this week for my final formalized speech therapy appointment. I was there at lunchtime and Nurses milled around the elevators with lunches in hands. One looked familiar to me, I recognized her clothing style. I remember bits & parts of my ICU time, some is crystal clear and some has a hazy glow. One such clear memory and one I believe I've spoken about before is my last interactions with Nurse Linda. It was life & soul changing, and I'm not being dramatic! Let me shine some light on it... I learned I'd soon be transferring out of ICU, but before I could go, they wanted to resolve my pain & discomfort with my peg tube. Because they were baffled why discomfort occurred every time they fed me, they wanted to make sure the food wasn't leaking out into someplace they didn't intend, so I got to have another CT Scan, lucky me. I think I should of had a punch card for all my MRI's , CT Scans & Swallow studies, with all those and the yearly MRI, I should be getting a free something or other, right? Anyways, upon hearing I was having another scan I was less than pleased. All I knew was that I didn't like the previous scans,the tumor discovery & Grand Mal Seizure episode during my scan, what would happen this time? I'll admit it, I let fear get the better of me and I was a mess. Enter Nurse Linda. She came into my room in her familiar attire, skirt & pants, hey it was winter time :) She came to check on me even though she wasn't my primary Nurse. As she prepared me physically (my bed, chart, & medical equipment) for the trip to the basement for the scan, she noticed my worried demeanor and asked how I was. It was clear I was scared.

Lord, you know the hopes of the helpless. Surely you will hear their cries and comfort them.
--Psalm 10:17, NLT

While she busied herself with cleaning & wrapping up cords, entering data into my file, and checking my med cabinet, she told me that I probably didn't remember, but she met me in those few agonizing uncertain days following brain surgery, and she'd been praying for me ever since. She felt drawn to me because she knew I was a Mom to two little boys (3 y.o. and 3 week old). She said that as an ICU Nurse she 'should' pray for all of her patients, but she felt she needed to pray specifically for me. I was so touched and I now know why. God had placed her in my life for a reason. I have no doubt He orchestrated it all, especially the timing. Moments before I was to be wheeled off for my scan, I asked her to pray over me. She didn't have to, in fact her job probably said no, but she did it anyway. She prayed over me and I felt all the anger & fear melt away. Throughout this whole ordeal, I finally felt peace. She took me down for my scan & stayed by me throughout it and then brought me back to my room. I haven't seen her since then until this week. Flash forward to this week, I was standing at the elevator & I noticed the dress/pant combo of a Nurse at my side. I looked for the familiar face, but initially I was thrown off by her darker hair. My eyes searched for her name tag and I finally had my answer, Yes, it was her. I look up & said, "I don't know if you remember, but" before I could get it all out she said "I was wondering if that was you!". We only had 4 floors to chat, I wish we'd had a hour, but I'm thankful for that moment. Since I've been out of the hospital I've been sending cards, mostly Thank You's to many of the Doctors, Nurses, and Therapists I've had the pleasure of working with and from many of them I'm left wondering if they ever get them, well Nurse Linda, thanked me for them. I in return was able to Thank her for the gift she gave me. Words can never be enough to say Thank You to all those involved in my treatment & recovery. I'm so humbled & gracious for it all. Although I didn't or haven't enjoyed all of my journey, I'm grateful for what it's taught me & what I've yet to learn.

End of Speech Therapy - Now What?

I guess when your in recovery mode you lose sight of what you did prior to the event that sent you into recovery mode. Side note: I'm done with formalized speech therapy and I'm not sure how to feel - happy, sad or ambivalent. I'm choosing the later. I'm happy I've progressed well enough to not require such formalized instruction, but, is this it? I still don't like what I hear. I still get questions & looks. I think I had it set in my mind that God knew I loved to sing & I assumed he'd restore my voice to me. I guess that isn't the case, not part of the plan, and that's okay because I can still communicate, just a little different than before. I have to really take some time & wrap my mind around that one. You see I LOVED singing, in fact I still do, I still sing at home or in my car, when no one is around but my husband or kids. Most of the time, I have a song going in my head, in my old voice. I miss my old voice a lot and I'm grieving that loss. I was the girl who sang at church, sang in competitions, sang throughout high school and a year in college. I think secretly I wanted to be a professional Christian recording star, but not anymore, not with this voice. I'm trying to embrace that God can & will use my new voice if I allow. Now, I dream to one day feel comfortable singing in a pew at church. I dream of sharing my story publicly, so that all may hear the goodness of God. It's interesting how dreams change, or maybe it's perspective ;0)

New Speech Therapy Exercises vs Surgery

Since Speech Therapy is done, I'm interested in other venues available to me. I contacted OHSU about a surgery Dr.Flint mentioned last time I was there. I wrote to a great speech therapist Jana, who works in clinic with Dr. Flint and has seen me each time I've been there. She was quite helpful in recommending some exercises to try for 6 weeks before we address the surgical option. I'd love to decrease my nasal emissions without surgery, so I'm definitely going to give these exercises' a go. She also encouraged me by saying that just because I'm done with speech therapy doesn't mean I'm necessarily done healing, it just means I don't need the weekly, monthly guidance I use to have. Nice way for me to look at it. Thank you Jana!

Upcoming for me this month :

Annual MRI - ugh! Please pray it reveals I'm fine still - the great Nile running in my head now is getting smaller (look at my MRI and you'll understand why I call it that).

Welcoming Baby Kragt - I'm so excited for this!

Moments of Thanksgiving:

Holiday Bakefest with my sister - we bake an enormous amount of goodies to share during the holidays and I get to spend a whole day with one of my sisters. Added bonus... this year I get to enjoy the fruits of our labor. YUMBO (as Zachary says).

Mom's that listen & let you complain regardless of their needs, worries or cares. Love you Mama - virtual leg wrap sent your way ;0)

Darren & our bimonthly movie date night. We've just started this and it happens after we put the boys down & we'd love recommendations for movies to see. Last night was Fireproof and boy is it AMAZING. I love you Babe! Thank you doesn't even encompass my gratitude, but I'd be amiss if I didn't say at least that.

Zachary & Kadin - you guys are so full of energy. You make me laugh, cry, smile, pull my hair out, dream, fear, and live. I love both of you so much. Thanks for being a large part of my journey. I'm fighting for you & Dad!

Dinner with family - Thanks Mom, Jaime, Niels, Auntie Jean & Uncle Rob for letting our crazy family join you for a delicious meal & memories. We are so blessed by this time! Love you all!

I think this is something new I'll add to each post. I've so much to be THANKFUL for! I'm putting my thanks but in no particular order.

Blessings to you as you prepare for this joyful holiday season, may you seize the moment to celebrate the tiny child born so many years ago.