Gifts in Abundance

Well I would say it’s about time for another update! Advent and Christmas have come and gone for most of the world, and we have plenty of news to update you all with (so bear with me if this is long! I promise I am leaving the lesser details out!!)

The week before Christmas, we had a phone appointment with our American doctor to go over anything new and discuss the results of the tests we sent away as the outcome of our last appointment.  For those of you who don’t remember, this past summer I was feeling quite discouraged about feeling so sick all the time that we decided to re-test for the major offenders, to see just how much progress I had made since last September, when this new treatment began. Since I had come from a doctor whom, after months of treatment (in 2011), finally figured out I was only getting worse under his care; we figured spending a “little” more money sending my blood off to Germany again was worth the cost for the peace of mind and understanding of how to best move forward.

In the weeks leading up to my appointment I had ample time to reflect on what had changed, and what had improved over this past year. People ask me all the time how I am doing, or how “it” is going. And day to day, week to week, even month to month, it is sometimes difficult to see lasting change. But over this past year...over this past year I was quite convinced of many changes, however slow and steady they may be taking.  And as I prepared my list of improvements, (no more seizures or hallucinations; my hormones balancing out; and most recently: stretches of feeling well between my herxes) I prayed that God would give me positive news during this appointment. It didn’t have to be positive to anyone but me; but my heart really  needed something it believed was good news.

And there it was, once again-- all too soon after waiting for far too long: the results. Well, Jack, as we have known for awhile, is in the clear. Matt, who was far more ill than anyone realised, is now 80-90% better! He is to remain on course for the next 3 months, at which point we will retest if there is any question that it remains. As for me? I got my positive news. My tests came back showing that I now have a functioning immune system! And as such, my Lyme scores came back higher, since my immune system is better at detecting it (which means my scores would have shown higher last fall, had my immune system been strong enough to notice how bad it was at the time.) The tests showed I have lower levels of bioflim (which shelters the spirochetes and keeps them in hiding); so now the Lyme is more easily accessed by the meds I am taking and killed. More great news: my body is finally absorbing and using nutrients from food again! Both doctors (US and Canadian) were pleased to see that I have gained weight as a result. And after being warned that this is still a “long road to China, Kate—a long road to China...” I was given my greatest news yet.  After only one year of treatment, two surgeries, and 10 months of IV therapy; and, well, we won’t count all those other years that weren’t helping anything; I am, overall (that is to say, parasite, co-infections, and all) -- 40% better! THAT IS ALMOST HALF!! I’m almost halfway there!!  And I can feel it. Praise the Lord!

Quite the difference, isn't there?

The following days were a testament to just how far I have come (and how good God is to me!) Last Friday I decided on a whim that I wanted to get Jack’s picture taken with Santa. I had plans with my sister-in-law to do some last minute gift shopping, etc, and thought that maybe—just maybe—I could bring Jack along on our first stop. He is always asking if I am coming along with him and Daddy places: heart-wrenchingly disappointed when I’m not; and equally as excited when I can. I figured we would get his photo taken, have a special lunch out together with Auntie and his baby cousin; pick up the one or two items we needed; and have him home in time for his nap (and us on our way to our next destination!)

 Well, our guesstimated one hour turned into three and a half. Jack has decided that he doesn’t like riding in a stroller anymore, so silly me, I didn’t even bring it along to help carry our bags! I’m clearly not used to taking a toddler out. Even a shopping cart would have done. But no—we entered the mall at the opposite end, loaded with my diaper bag, purse, and his winter coat; all the while overheating in my own; and trying to hold his hand as he pulled this direction and that, in the crowded mall of shoppers, wanting to touch and climb on everything he shouldn’t.  Even eating out, Jack played the usual game of “I only want to eat my carbs,” requiring all my best tricks to get him to eat (which worked in the end! One point for Mama!!)

 Santa was fantastic, and really knew what he was doing. He somehow got Jack peeled off my legs and onto his lap without any manual labour required! When asking Jack what presents he wanted Santa to bring him, Jack replied, “I don’t need your presents—I have LOTS [of] presents under my tree!” And when Santa wouldn’t stop making suggestions, Jack finally settled on, “Erm... [a] BIG present!!”  Despite his initial reluctance, and disinterest in Santa’s generosity, we not only managed to get a good picture, but Jack excitedly rushed back to yell, “HI SANTA!!” every time we passed by thereafter!

Jolly old St. Nicholas and my handsome boy <3

It was, needless to say, exhausting. At the end of it all, I could barely walk. I was overwhelmed by the amount of care a 2.5 year old requires, especially in a busy mall with the fear of losing track of him, let alone caring for his needs and getting the errands done! My respect for mothers (and Matt!!) who do(es) this all the time climbed even higher on the charts, let me tell you! My sister-in-law was kind enough to remind me that in the case of most mothers, there are baby steps, and time to ease into the chaos each new stage of development brings. The last time I took care of Jack on my own was over a year ago, for a day ; before that, it had been another 10 months prior when I had to go from taking care of my baby daily to giving in and asking for regular help. So as hard as our little excursion was: it was good. It was so good! To be a mother, out and about, caring for her son, getting things accomplished—sigh. It was Christmas gift #2.

Gift number three came the very next day. Many of you know that due to insomnia (one of my most prevalent and annoying symptoms—and apparently, one of the last to go) I sleep in until noon everyday, at which time I take half an hour to gain coherence so I can begin reading with Jack to get him ready for his nap. Well, this day (when I should have been plastered to the bed, recovering) Matt woke me up by saying, “this [potty training] thing isn’t working. Jack has gone through 5 pairs of underwear just this morning. I give up.”

“Did you read the book?” I responded. The book that, for months, has been sitting on my bedside table; the first half being read, and re-read, with so little retention that it was finally set down to collect dust. But the night before when Matt decided, as he was getting ready for bed, that he would begin potty training Jack the next morning, he asked for the synopsis. So, I cracked it open again, and (in between elbowing him awake) I read it aloud. When I realised he was asleep for the night, I turned to my highlighter and sticky tabs, and with a mind and a drive I haven’t had since my college days, I got to work gleaning all the most pertinent  information that I could (Christmas gift #4—my mind back... if just for a time).

“No. I didn’t have time to read the book” (was his response). “I can’t do this anymore today. It is his naptime, and I am exhausted from too little sleep and cleaning up pee. I’m putting a diaper back on him.”

 At this, I shot out of bed. (Did you catch that? I shot out of bed. Without coffee. After being awake for less than 5 minutes. Okay—just making sure you got that!) “No!” I said, “he can’t go to bed without having been successful! I’ll show you what to do, just please, don’t give up.” But Matt wasn’t exaggerating when he said he was tired and done, and so (get ready for this...) I sent him to nap while I, Kate, proceeded to carry out potty boot camp for the next hour and a half. (Christmas gift #5: being the one to potty train my own son!!) After both boys got up from their naps we all carried on with the training. The next day went fairly similar to the first, wherein I fully expected to be of no help out of my need to recuperate from the past two days...but somehow I did just fine.

Christmas came, and I was able to attend both Matt’s family’s celebration and my own. A month ago I would have told you I wasn’t sure if I would make it out for Christmas Eve with the in-laws out of anxiety over the crowd and fear of my own physical restrictions. Not only did I get to celebrate (with only a brief respite in bed); but I was up at 8:45am the next morning to open presents with Jack! Christmas presents number 6 and 7! The miracles just don’t stop. But my energy did. It finally ran out for good (meaning, I have been experiencing that hit-by-a-truck, sleeping 21 hours a day)starting two days ago.

Mama and Jack on Christmas Morning

One last Christmas miracle that I have to tell of: when we returned home on Christmas Eve from Matt’s parents’ home, as I was getting ready for bed there was a knock at our door. At first we almost didn’t hear it. But they knocked again, and Matt answered it. It was two friends that we had yet to meet (is anyone really a stranger?); they had come to deliver the “gift of time” in the form of homemade meals. Now, for the remainder of the time that Matt is home on Christmas break, he won’t be spending it thinking up or preparing dinner, because our nameless angels did that for him. I don’t know if they read this blog, or if this thank-you will ever get to them. But I hope they feel the blessings from the prayers we say for them each night.

We hope you all had a very Merry Christmas, and look forward to a New Year full of new life in its many forms; happiness; and health for you and your loved ones! We plan on starting off the New Year right: by celebrating our 4th wedding anniversary (on January 3rd)! I could write another entire blog about how blessed I am to have my Matt; but I will save that for another time :) Please pray for us as we journey ahead into a new year of marriage and life! We are praying for you as well.

Blessings and love,

Kate

“For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.”

Isaiah 9:6

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him"

1 Corinthians 2:9

Growing Pains

I am in the middle of a herx, again. It started last week (two weeks ago?) with Cranio Sacral therapy, which plastered me so flat to my bed, so hard, that I almost couldn’t get up to pee.  I initially went for the therapy (which is like Chiropractic care for your muscles, through gentle, guided massage) to get some pain relief from my muscles being all bunched up due to the way I’m propped up in bed. But my body had different plans, and instead the facia gave way in my abdomen rather than in my back, and I had so many releases and things moving back into place that I became toxic from all the movement (Lyme toxins love to hide in the intestinal tract). I became more ill than I have been in a very long time. So much so, I had to miss my godson’s baby shower that I had helped plan (albeit from bed) for months!

 I am now able to sit propped up in bed again, but I have been so tired, and lacking motivation to do anything (who lacks motivation to watch TV?? Honestly.)  This could be an answer to prayer and a sign of healing (less OCD keeping me up at night; more fatigue to help me sleep off this illness); I could just be herxing so badly I can’t even stay awake through it. My joints are twitchy and distorted again, so I know it’s bad. Starting a new medication last week probably didn’t do me any favours in recovering from Cranial; in retrospect, if I am going for muscle therapy, I should at a “quieter” time in my treatment plan. The oxygen I am supposed to start up on again (and am terrified to because of the seizures last time) we will wait on for a bit.

In other news, my mom requested a healing mass be said for me. A wheelchair was rented so that I could manage sitting up (and by “up” I mean at an incline), as I can’t really sit up for very long at all, let alone on a hard surface like a pew. It was the first time I had attended mass in almost a year. And it was a very overwhelming experience, in so many ways.

When we arrived, I felt like my chest was going to EXPLODE. I took an anti-anxiety pill on our way to the church, and even though it had kicked in by the time we got there, it didn't seem to help. I felt so conflicted. On one hand, I was SO happy to see all the people that I love and miss dearly; and on the other-- so, SO anxious, I could hardly look anyone in the eye. Any time someone did come up to me I was so touched that they were all I could seem to do was cry.

Right before mass, Jack asked to sit on my lap. There aren’t very many opportunities that I get to “hold” my baby, or care for him. And for anyone who knows him, he is such a busy boy, I was a bit nervous his wiggles would be too painful or too exhausting for me. I welcomed the opportunity anyway. And miracle of all miracles, he sat there, leaning back against me, for almost the entire time. Having the weight of his little body lean into me felt like he was holding me together; keeping me from bursting from the anxiety buzzing inside.

It wasn’t until I received the Eucharist that I received the peace I so desperately needed; dumped on my soul like a heap of snow. An insurmountable sense of gratitude filled my heart... more than I have felt this entire illness; remarkably, in part, for my illness.  And all I could pray, over and over again, was “thank-You.”

And though my anxiety returned with the crowd, the gratitude stayed with me. I have realized over the week, positive changes I had yet to be grateful for. As much as I have felt my life has been put on hold, or that I have, neither is true. All along, lying in bed, God has been working on my heart. Changes have, and are, being made; changes I wouldn’t reverse for the world.

For example, I used to strive so hard for perfection and to keep up appearances. It was more important to me that I have a clean house and scheduled company (and that I did it on my own—no help necessary!), than to foster community. Again, my vanity got in the way for most of my teenage and adult life. I wouldn’t go anywhere without make-up on; and because of such, missed out on opportunities to be gracious, and loving, or just plain experience life. 

Along with my perfectionism and vanity came a fear of being alone. I was so scared to be without company or something to do; afraid of being alone with my thoughts; afraid to get to know who I really was. Afraid of being bored.  And in all of this, I have also learned by laying down my perfectionism (to a degree), and vanity, and pride, came the ability—bit by bit—to ask for help from others. Because you can imagine how being sick doesn’t afford one any of the above luxuries. I couldn’t clean my house if I wanted to. By the time I have mustered up the energy to put make-up on, I am usually too tired to go out. And not being able to leave the house my room most of the time doesn’t allow me the best social life.

Now, all of these “issues” are rooted in pride. And believe me; I have a long ways to go in the pride department before God is finished with me. But I have to say: I am genuinely grateful for the cross He has given me in this illness, because He knew catching me while I was “on pause” would yield the greatest results. He has been working on freeing me of the sins and the walls that held me down and kept me from being me for so much of my life; and that kind of stuff doesn’t just happen overnight. The gift of being comfortable in my own skin...learning how to love myself and my life that I might better love others in theirs.

Next up: feeling comfortable in a wheelchair in public. Because that is one I just can’t  quite shake the feeling of eyes being on me for.

So, even though I may not like you for it: the next time I am down, please remind me that I am not wasting my time here; that I am not “on hold” or “in between” or anything less than the amazing things that God is doing in me. This is my growing time. And growing hurts.

Blessings and love,

Kate

I figure I should write since I left you all last on such a low note. First off, I want to say thank-you for all of the prayers that guided me out of that deep, dark pit and carried me closer to God. My heart is still heavy, but I have come a long way since I got my updated prognosis, and I know that our united prayers are the reason for that.

I also want to thank you for the overwhelming response of support, love, and acceptance. It is a scary thing to bare your soul like that; to admit you are weaker than you wish you were; and yet, I was surrounded with nothing but encouragement for being open with you all. I could try to hide my emotions, from myself or all of you, but I keep hearing this truth that we need to “allow ourselves to feel”—no matter what it is we are going through. I don’t know about you, but I don’t want to feel angry, or depressed, or hopeless, or anything negative at all. But feeling those things, giving them a voice and then giving them to God, is going to make me a much healthier and lighter person in the end.

And now, for some updates! We were able to rent a wheelchair on the way home from our less-than-positive doctor’s appointment, and enjoy the Calgary Zoo-- as a family!! It was so nice to share in new experiences with Jack, firsthand. I even got to go on the merry-go-round with him (which was bittersweet, as I’d forgotten how badly Lyme patients can get motion sickness!) But, it was a gorgeous day, a wonderful time as a family, and just the distraction that I needed, even if my head was in the clouds a lot of the time.

Next up: you’re not going to believe this (well, maybe you will, but I sure didn’t!!) Our “full coverage” insurance might as well be “sixty percent coverage”, because unbeknownst to us, there is an annual cap on it; a $15,000 cap to be precise; a cap that we have exceeded. So for the remainder of the year, the bill is on us.

Some good news: we had to buy an oxygen concentrator earlier this summer, and as always, my diligent husband priced them out across the city. He found a company who quoted him well below what the rest did, and after hearing what a savings this quality brand offered over the phone, he asked them to send one our way. So, $850.00 (plus GST) later, our fancy-schmancy machine arrived. And two weeks after that, so did the bill. For almost THREE THOUSAND DOLLARS. Matt got on the phone right away to reconcile the discrepancy. This couldn’t be our bill. We were quoted less than nine hundred dollars. This was thousands of dollars. The mistake? The machine cost $2850.00, and since we only got a verbal quote, we mustn’t have heard the “twenty” before the “eight hundred and fifty dollars.” You are probably wondering where the good news is, and if I have gone crazy (I have, by the way, but the story does get better).

So, the woman put Matt on hold, and went back to listen to the “this call may be recorded for quality control” tape, and must have found out that the saleswoman really did say it so fast and/or quietly that it was obvious how he'd misheard her! But instead of pinning the blame on Matt for not hearing it right, or not requesting a hardcopy of the quote, she came back and said, “I am so sorry for the wait, sir. We understand that is quite a large difference, and as such, we will alter your bill immediately.” BAM. Just like that! Two THOUSAND dollars off our bill in a matter in minutes. Their mistake or not, they most certainly did not have to honour a verbal contract. It was nothing short of a miracle to so quickly and kindly have a huge lump sum just erased from our bill! God provides. All the time. Emotionally, and financially; and I am never ceased to be amazed by it.

And now, for some fantastic news!! Last night, for the first time since January (when I had to come home halfway through our anniversary dinner), my husband and I got to go on a date!!! Armed with a gift card we received last Christmas--and a desperate prayer on my part-- we attempted dinner, and after that: attended the second theatre movie we’d seen since Jack was born. And I would have to say, it was a success!! I didn’t feel well, that is true, but I was able to push through and enjoy myself. The restaurant and theatre were both much too loud, and my social skills less than refined (which came as a shock to me...who knew I would have difficulty making small talk with our waitress?) But as alien as I felt, it was amazing to spend time with Matt as husband and wife, and not caregiver and patient. To get dressed up for him; to see him as the handsome man I married; the man I love spending time with, was something my heart needed so badly. I didn’t forget for a moment I was sick (I was in too much pain for that!) but this was one of those times that pushing myself, while hard on my body, did wonders for my mental health.

So, while I am still longing for a “normal” (or should I say healthy) life, I am starting to find my balance again. I am able to look back and feel blessed with both the pit stops we made (to and from our appointment), as well as the time spent with our "family" down South, and not just focus on the disappointment of our doctor’s visit. I am trying to let go of the expectations I have for myself and just allow myself to be sick, and weak, and incapable when I need to (or as healthy people would say, to “take care of myself”). Please, don’t stop praying for me. I need nothing short of a miracle, and I would be so grateful if you would continue to storm heaven with me. 

My prayers are with each of you.

Blessings and peace,

Kate

"But in their distress they turned to the LORD, the God of Israel, 

and sought Him, and He was

found by them."

2 Chronicles 15:4

"When my spirit grows faint within me, it is you who know my way."

Psalm 142:3a

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let

your hearts be troubled and do not be afraid."

John 14:27

I want to kick a wall in—a door down; to rip open a feather pillow (because that would be much more dramatic and satisfying than a cotton one); to scream, and cry, and scream some more. (Okay, so I’ve done the screaming and crying part already).  ONE to THREE MORE YEARS?! All I could hear was “three more years.” The hope of “one” was drowned out by my inability to process because even though I did not feel that I could go on one more day, I could have years of treatment and illness ahead of me. Years that feel wasted in bed, NOT living the life I had dreamed; spending the years I have waited my whole life to live: young adulthood, early marriage, pregnancy, and motherhood-- stuck in this ongoing nightmare that I just can’t seem to wake up out of.  

This time last year, we were making the appointment and arrangements to go down to the States. We made the trip, and came home to wait out test results and to try to find a doctor nearby who could give us the care we needed. Six weeks went by, and finally in November of 2011 I began oral antibiotics to begin chipping away at “the tip of the iceberg” of the many diseases that riddled my body.

 It wasn’t until March of this year that I was able to get the surgery needed to begin IV antibiotics. Six and a half months ago. Why does it feel so much longer than that? A lifetime has passed; we have moved out of our home, made a new one, and moved back again. I have been sicker than I have ever been in my life (but for the time when this all began with Meningitis), and I am SO weary of grasping at straws to create a positive enough update to keep someone from feeling worried, or sorry, or sad for me; or trying to reassure others that this is working, that I am getting better, and that it just takes time. This disease took up residence in my body three and a half years ago: it is not that easily reversed.

Most of the time, I am at peace with my illness; with the amount of time this is taking; with God’s plan for me in all of this. Even still, depression looms, a wet, sticky fog that coats anything and everything; and, when I get tired, or more sick from a Herx reaction, it makes itself all too painfully apparent. Those times I have to pray especially hard, and work especially hard at re-making my peace with this. Like all lessons God has for me, this cycle of lessons--weighed down by depression-- rolls around again and again, begging me to let go of the life I have constructed in my head; the life I have already let go of seven hundred times before.

A life of pregnancies, and fresh newborn babies; of breastfeeding and babywearing and feeling tired from working hard and caring for someone else. A life of taking care of my husband: dating him, kissing him (on the lips!!); not to mention being close enough to him to make more babies. I want a life where I can cook my own meals, and clean my own house, and drive myself places; one where I can attend play-dates and parties and family events. A life where I can give back to others in need.  

So, when I was at the end of my rope last Friday and asked my doctor how much longer this would take, I was in no place to accept the ballpark figure she had for me. I knew she was reluctant to say anything until we re-tested (in the next few weeks) to see what progress we've made; I’m sure she was reluctant altogether.  False hope is a risky dish to serve. What we do know is that since the treatment has been so effective at killing off the Lyme, it has removed the veil which Babesia was hiding behind. “And if you think Lyme disease is hard to treat...” Well, this is a really hard disease. This is where my increasing bone pain, and my breathlessness, and my crazy nightmares that I can’t tell are only dreams (even half a day after waking from them) are coming from; this is the culprit behind the seizures, and memory loss, and many other things that just aren’t improving yet. And depending on treatment, I still have one to three years left to go. 

The consolation? (I didn’t want to hear it, but maybe you do...) I won’t be on IV’s the whole time. I will be getting increasingly better (not better enough to live my life the way I want to though). The action plan: an increase in certain meds, and the introduction of an IV antibiotic that will attack the Babesia. I will Herx even harder than I have been. And I am scared. I am scared to be so sick I am mentally detached from my family. I already feel so detached from the outside world (even more so since we have come home, as I can’t push myself as hard as I could before).  I will be switching my anti-anxiety meds to ones that won't potentially cause depression as a side-effect, and in turn, will hopefully work together with my current anti-depressants to give me the boost I need.

I know I will get out of this dark place, because I know that God will give me the strength I need to keep going. He always does. And maybe this is too hard for some to read, and I am sorry, and that is okay. Depression is yucky, and scary, and so is this illness. But the dark times are a reality, too. So, I am not the poster-child for how to live gracefully and joyfully with multiple diseases. I am going to be okay with that, because I would rather be real; I would rather be an example of what this is really like than lie to all of you. Christ is still my light, and my strength—no matter how angry or hopeless or sad I get. And He can be for you too. You don’t have to be perfect for God to use you, or to hear you. I am as broken as broken can be, and if He would only use me, my life would be fulfilled.

Please pray with me for healing... for a miracle. For the strength and patience and joy that my family, my marriage, and that I need to weather this. That God would use this to grow me for His greater purposes and Glory. For everyone affected by this disgusting illness; and for those who lift me up and help me fight it. And for a cure.

“Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.

He gives strength to the weary
    and increases the power of the weak.
 Even youths grow tired and weary,
    and young men stumble and fall;
   but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.” 

~Isaiah 40:28-31

"...God can still use you. He doesn't look down on you. He looks on you more. The weakest people have done the most for God, because in our weakness, He is strong. Don't ever be ashamed of your weakness. God wants you to see the potential of who you are going to be with His help. He wants to bring beauty from your ashes and heal your wounded heart. God wants to use you where you are, as you are. And He promises to carry you on the days you can't see ahead."

(Barrick, Linda. miracle for Jen, 2012.)

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’”

~James 4: 13-15

Blessings and love,

Kate

We’re home!!! (But you probably knew that, didn’t you?) After an exhausting and emotional week, tearful goodbyes, and a hard drive home, we made it back to our house in Edmonton. I was full of mixed emotions, as I had grown attached to where we were living, and had come to realise that a house is just a house; it is when your family and friends are in it that it is given life and becomes a home. And with friends in both places, no matter where we went, we seemed to be leaving a home behind. 

It came as a great and cheerful surprise to find this upon our arrival:

Our entire yard decorated by friends, including a welcome home sign and multiple messages of love stuck to our front door. It was a wonderful sight, and gave us the boost of energy and excitement we needed to unpack what was needed before collapsing into bed.

Matt had to go back to work for a 12 day shift only a few days after returning, with much of our house still in boxes. It took me a good week or so of sleeping full days to recover from our travels, and as always, when the fatigue and pain hit hard, so did the depression and anxiety. I knew I should be happy to finally be home. But I wasn’t just yet. I was too sick to see anyone, and with Matt away I was feeling quite lonely and miserable.

 After recovering that first week, the sun came out, and I had a few good days. One I can surely say was the best I have had in two years! I was up and out of bed all day; playing outside with Jack, taking him grocery shopping with my mom; picnicking in the backyard at dinner time, and bathing my little boy all by myself. It was amazing to spend so much time with my son, outside in the gorgeous weather, clear in mind and free of pain. A sign that my Herx reactions are finally being punctuated with not just good, but great days; days which should slowly increase in quality and quantity with each cycle as my health continues to improve.

My insomnia has also begun letting up in phases. Instead of constantly fighting to get to bed before 5am, I have had several days of falling asleep before 10pm. I used this to my advantage last week to rest up as much as possible to prepare for our godson’s baptism last weekend. The combination of rest and prayer did the trick, as I was able to get up early to attend, be a reader, and participate as his godmother without issue. I also made it to the luncheon afterwards, visiting with the crowd, helping with Jack, and rocking the new baby. Besides being short of breath for most of the day, my fatigue and pain were manageable, and I really, really enjoyed myself!! It was a beautiful day.

We have been “busy” by our current standards as we have begun catching up with more than just family members by now. I have to be careful to limit my activity so as not to overdo it. Every Wednesday we have to make the hour-long drive to get my dressing changed, and then turn around and make the drive all the way back. Being in the car for that long is hard on my body (sitting up in general still is), and since we are still trying to figure out the “kinks” (i.e. help the nurses put their theory into practice), it has taken up to 2 hours for the appointment itself! Between that and the car rides, it makes for a dreadful, exhausting day. I will say this though: I am very grateful for their willing spirits and desire to help, and equally grateful for the nurses down south who very expertly executed and explained the steps of a port access to me time after time. Because of the two, I am able to help teach with confidence (and without stepping on anybody’s toes) the understanding I have of my body and the devices we are working with; even if the downside is getting multiple piercings in one afternoon, as they try to figure things out here. I am a bit of a guinea pig in this regard, but as most Lyme patients can attest: if it means paving an easier way (or a way at all) for future patients, then I’m game. I have a very dear friend who blessed me with that attitude-- despite his discomfort, helping me have a better chance was his priority. And it is an honour to carry that attitude forward.

So—we are home. We are finally settled. We are relishing some much-needed hugs and visits, and we are moving forward in treatment and with progress. Our newest acquisition: an oxygen circulator. Next up: buying our own hospital pump (the one we are using now is borrowed from our neighbour-friend, as the hospital loner down there couldn’t very well be checked out all the way back in Edmonton)! Our house is looking more and more like a hospital with each new purchase, it seems. But boy am I grateful that it isn’t a hospital; that we were blessed by others to afford these much-needed items; and that I am getting the treatment that I so desperately need. We are blessed beyond belief, and will never stop being grateful for the means and the prayers that feed our fight; every last bit is an extra push toward the finish line.

God bless you!

Kate

“...and for all things give thanks; this is the will of 

God for you in Christ Jesus.” 

 1 Thessalonians 5:18

“And all of us, with our unveiled faces like mirrors reflecting the glory of the Lord, are being transformed into the image that we reflect in brighter and brighter glory; this is the working of the Lord...” 

 2 Corinthians 3:18

We're Coming Home!!!

It is with great excitement that I can announce, after four  LONG months, that we are moving home! In almost as swift a fashion as we left in, we are hoping to return with similar speed: this weekend to be exact.

The doctor closer to home is now prepared to work with us! After what seemed like a disappointing initial visit a few weeks back, the wonderful Director of Nursing ended up calling me. She worked through a number of phone calls and text messages to get the information she needed to bring in the proper equipment and train with it. And, as an answer to many more prayers, the doctor agreed to all necessary conditions to make the move a safe and dependable one. (Isn’t God amazing?!)

The appointment with our doctors last Friday went well. Both were pleased with the improvements my health has made during our time here. I was feeling very discouraged recently just how slow progress seemed to be. I know this is supposed to take time, and that I have shown improvement, I guess it was just feeling like the road to recovery was a never ending, almost unchanging, one. My prayer that God would show me how hopeful my progress has been was answered; and even though the road ahead is long, I am encouraged because it will be one surrounded by our family and friends.

I think somewhere in my mind, this time will always be viewed in retrospect as “the year we spent away”. It has been an incredibly long, hard, lonely time; one of healing and renewal; growth in wisdom and relationship with God. I am so very grateful for all of it. For the man who gave our family a fighting chance when he gave us his home; for the privilege to receive treatment that so many are denied; for the kind hospital staff; for our warm, tenacious, hardworking doctor; for the family we have made out of friends.

I don’t do very well with change...even going home is bittersweet. I am going to miss looking off the back porch and seeing farmland just houses away, or how homey the hospital feels here compared to others. But most of all, leaving anyone you love behind is just plain hard to do; whether it’s 3 of them, or 30. My connection here is a powerful one, and I think I will always see it as a home away from home.

I am excited to be settled back in our home; to be able to enjoy our yard ( I never really got to here, as we had a walk-out basement and the stairs were just too many!);  our cool basement; and most of importantly, seeing our friends and family in person once again!! I am certain that some things will feel strange after being gone for so long (I half expect our old pup Holly to be waiting for us there!)

 It feels like when any rite of passage comes to pass-- graduation, giving birth, etc.: after what felt like a never-ending journey full of trials and valleys and wondering if you will ever come out to see the other side, there it is: “already.” No matter how long it felt that it took to get here, now that it is upon us, I suddenly realise I could  I have done it. And that is an amazing feeling! More adventures to come, no doubt. But for now... here’s to the next leg of the race!

Peace and blessings you all,

Kate

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.”  

Hebrews 12: 13

Season of Suffering

Baby boy don’t grow up too soon

Your youth isn’t here to stay

I know at times it seems as though

I’m a million miles away

My mind may wander;

My body fails

And my memory, it fades

You may think I don’t want to spend time with you

But that isn’t a choice I have made

Husband love, don’t give up on me

I know this isn’t right

A cause that many choose to flee

You stand your ground and fight

I know this is not the life you dreamed

Our plans have seemed to fail

But I promise if you’ll hold tight to me

Our love, it will prevail.

Body weak, sore and abused;

My Spirit doesn’t understand you

The two of you, though once were fused

Now fail to read each other’s cues

Oh Lord, my God; strength within

I fix my gaze on you

Holding tight to what I know

My strength is all but used

So take my son, my love, my life; all that’s been neglected

And in this time of suffering

May Your Glory be reflected.

A Post in Honour of my Husband on Father’s Day.

Sadly, but not entirely surprising, Matt won’t be here to celebrate Father’s Day this year; his shift-work has kept him working so hard. By the time he comes home, it will be 21 days of the twelve (plus) hour shifts he has been working, with only a single day off in the midst of it.

I wanted to write this because I am the one in the limelight most of the time. I admit-- I put myself there with having a blog and all, writing from my point of view, and usually about me. You all know how I am feeling: physically and emotionally; what goes on in my life on any given day, and how hard this disease has been on me. But there is one who goes without credit, and I think I ought to give credit where it is due.

Anyone who has met my husband can tell you from even the briefest of encounters that he is friendly, humble, kind, genuine, and hard working. (And yes, even in the briefest of meetings you will recognise the latter; he does not stop “pitching in”, wherever he may be!)

When we went down to the States, and we got the boys tested, Matt came back positive with Bartonella: “Cat Scratch Disease” (that can be contracted from a cat, like he did, or from a tick, like I did ). Only some of the very closest to him have seen how this has slowed him down. No one else would believe that it has. As a matter of fact, our neighbour friends just asked the other day when Matt was going to start his treatment. They were so impressed that he had been caring for us so hard while he was sick. They were SO surprised to hear that he has been in treatment all this time; Herxing, working, and coming home to care for Jack and I through it all.

I had a friend ask me the other day how I would do this on my own, and my answer was: I couldn’t. Without Matthew, I would have been dead a long time ago. He literally does EVERYTHING for me: from providing financially, to organising my doctor’s appointments, to compiling spreadsheets of the supplements and drugs I am on so that he can fill a week’s worth of dosettes that I may have every last pill correct. He is responsible for the roof over my head, the food I eat, the medicine I take, the caregiver I have, and best of all, most important of all—my inspiration to fight: our son. His job goes beyond being a “single parent”; beyond caregiver; beyond hard-overtime-working employee. He is more than my coach; my nurse; our housekeeper; our cook. More importantly than being my advocate; my memory; my rock; he is my husband, and the most WONDERFUL father to Jack.

If any of you wonder how I can manage this fight, it is because God gave me Matthew; and together, they gave me our son, and the four of us, well, we can’t be beat.

This is for my unsung hero. My Knight in Plaid Armor ;) The man behind it all. You are such an incredible example for so many, and Jack is so fortunate that you are his example of a father. He is blessed to have a man like you, fighting for his mommy, and for him, everyday of your life. And I am too.

Happy Father’s Day, Matthew. We love you with all our hearts <3 <3

xoxo

Kate   & Jack

 "For I have chosen him, so that he will direct his children and his household after him to keep the way of the LORD by doing what is right and just, so that the LORD will bring about for Abraham what he has promised him." Genesis 18:19