Once upon a time, a 15 year old girl and 16 year old boy met at their high school musical auditions. They briefly chatted, flirted, and parted quickly. A few months later, the girl watched the same boy take a deliberate dramatic dive off the auditorium stage in the middle of the Christmas show and her heart skipped a beat. She didn't even know his name, but for some reason she felt a sense of ownership. After spending the rest of the day together sparks flew. There was no denying it, she was hooked.
Twelve years ago, I met my now husband of over five years. We had a rocky relationship in high school to say the least. Partly because I wasn't allowed to date and I blatantly defied my parents and two, we were insanely immature. Both of us are passionate people who can be impulsive and I especially can get swept away by my emotions. We became very committed to each other, very quickly. It was an intense and quite unhealthy relationship for two teenagers who weren't emotionally ready for that kind of commitment. We fought constantly and I had major jealousy and control issues. While also jumping into inappropriate intimacy, we were left with the consequences of all our poor choices. Yet somehow through all the drama, we remained together. We grew up together and, although making more mistakes than I care to admit, God used it all and brought us into true relationships with Him.
Although I professed to be a Christian from a young age, in my world that just meant repeating the "sinner's prayer", going to church, following the rules and then getting to go to heaven after death. I didn't realize for many years that I had missed the mark. Yes Jesus died so I could go to heaven and yes I needed to repent and believe in Him but I never realized that God didn't just want my words and obedience to rules, He wants my heart, my devotion, my life. When I started to realize the depth of what Jesus did for me on that cross, to give me complete freedom in this life and a unending depth of relationship with the creator of the universe, I knew Jesus couldn't just be a bumper sticker anymore. I wanted Him, all of Him and in return, I wanted Him to have all of me. I may have been a "Christian" but around the age of 20, I truly became a Christ follower. Jesus was no longer a historical figure, He was my King and Lord of my life.
After the drama of high school, we unofficially broke up for several months so we could both "do our own thing." It was basically a time where both of us rebelled and made a lot of sinful choices.. Yet God was there, working in both of us and in His time, revealing to us that if we truly wanted an intimate relationship with Jesus, one thriving and honouring to Him, things needed to change.
Bit by bit, God called us back to Him. We started going to church again, actually reading our Bibles, and pursuing Jesus passionately. We were truly HUNGRY for God. During this time we got engaged. We recommitted ourselves to a God honouring relationship with each other and each a deeper personal relationship with God. Looking back, I find it amazing to see how much God worked in both of us during such a short time. When we finally relinquished our lives to Him, God did not hold back. He stripped our pride, showed us our sins, challenged our faith and drove us deeper and deeper into His awesome power and love. Every day seemed to hold something new in the Word that God wanted to say specifically to us. It was amazing to see His Word come alive and we welcomed it more and more. Convictions on things that once never bothered us, grabbed our hearts and the more we pushed into Jesus, the more we started to see changes. We suddenly had genuine love for others, even people we struggled with. We got a distaste for any TV show or movie with explicit or vulgar material and our attitudes and perspectives on material wealth and priorities were being flipped upside down. It seemed to be that every area of our life was being touched by God and although some changes were painful and (in all honesty) sometimes unwanted, we embraced it, knowing and trusting that God knew best. Our hearts were genuinely changing and our love for Jesus began to be the absolute most important thing in our lives. We allowed God to be the potter, and us the clay.
In the several months leading up to our wedding, doing our premarital counselling, God molded us more than ever before. While God was working powerfully in our hearts, we experienced more intimacy in that short time than in 6 years of dating. Our wedding day became so much more than just repeating vows of love, it became a true symbol of God's grace and redemption, making it more special than I could ever have imagined.
Since that day, our walks with Jesus are constantly changing and deepening. One of the best days of my life was when Adrian came home, kissed me and said "I love you, but I love Jesus more". To the rest of the world, that may sound crazy. To love a god more than your spouse, but Adrian and I were blessed to learn young that when Jesus is our first love, all other love is perfect and complete. The closer we are to God the closer we draw to each other.
We do not have a perfect marriage by any means, but we cant say we've had the typical tough first few years of wedded life. We give all glory to God for taking us through harsh refinement before we became man and wife, and we praise Him for what that has done for our marriage.
I am not proud of the choices we made as young adults and we both carry scars and strongholds which still rise to the surface, but I can look back in amazement at how God masterfully used all of it for good and His glory.
Our love story is His love story and I can't wait to see what lies ahead for all of us.
Last Tuesday (June 18th 2019) I entered Grand River Hospital Kitchener for surgery.
I am no stranger to operations, having my first at one month old. Over the years I've had several eye surgeries, my appendix taken out, dental surgery, two c-sections and other procedures for my chronic illnesses. I know the protocol very well and know what to expect each time I enter an operating room. However, in my current health state (which is quite poor) this surgery posed a number of possible complications. I needed an exploratory laparoscopy to get rid of adhesions and endometrial tissues throughout my abdomen as well as an ablation. Two procedures in one operation that was hopeful to be short and simple.
Over the years I've learned to become my own healthcare advocate. My medical history is extremely long, detailed and complicated. Some wouldn't believe all the procedures and treatments I've done or been on, and with having to see several different doctors in different specialties, I've become quite proficient in the medical world. I know my body and I know what works and what doesn't.
For this surgery we did everything we could to prepare for anything out of the ordinary, but you can only prepare so much. I met with as many of the doctors, nurses and staff I could that would be taking care of me, to fill them in on my history and together come up with some precautions to prevent complications that have happened in the past.
My body does not create enough antibodies and therefore I have a poor immune system (Common Variable Immune Deficiency) making infections likely and healing slow. We also factored in my need for steroids (Addison's disease) and my lupus, that has been causing issues for months. With all these factors, they planned to give me extra meds, keep me overnight (although it was day surgery) and watch me carefully.
It's been 11 days since my operation at 11:30am and what a crazy week its been! I went into surgery nervous but grounded in my faith knowing God was in control. Thankfully the whole procedure went well (I assumed, because the same surgeon never came to talk to me afterwards or give me a review of what happened). I woke up in the PACU with a very sore throat and throbbing pain in my stomach. Once I returned to day surgery, I could start to talk again and sucked on a popsicle while the poor nurses on that floor had to figure out the logistical mess the PACU nurses created. Papers were missing, instructions got lost, miscommunications occurred and everyone was frustrated. They eventually hunted down the Internal Medicine doctor whom I saw in preparation, who then had to rewrite the orders. Eventually things got sorted and we thanked God for His control in all of it (and for getting us out of there!)
On the unit, I was admitted to a ward room and tried to rest. I was very sore and grateful to have a wonderful nurse who went above and beyond (thank you Anna!) to make me comfortable. We had some trouble post op with some unexpected bleeding and bladder issues. I ended up staying a couple days, but went home feeling confident that recovery would go smoothly from there on. Unfortunately by the weekend, my pain started to increase and I started swelling and I definitely was not feeling better.
Monday morning, we were at McMaster Hospital for my regular IVIG treatment. While there, my routine blood work showed infection and the nurses didn't like the look of me so they referred me to the on-call doctor. After a CT scan, we learned I had an infected uterus, a small hernia, fluid around my heart and a small amount in my lungs. I was admitted quickly to the women's Critical Care Unit and started on a treatment of antibiotics and steroids. I was in a huge room all by myself with the most wonderful team to look after me. While getting settled, one nurse came in and said how sorry she was that this happened and gave me a kiss and a hug while I cried a few tears. She said she would be praying for me and in that moment I felt God reminding me that He was still in control. I hated that I had to be there. To get yet another infection, to be in another city away from my family and having to be poked and prodded every few hours. I was angry that all our "preparations" didn't seem to work and tired of having to give our loved ones more bad news. It felt like it was just another wave of nasty circumstances that keep happening to us. We were overwhelmed and burnt out.
I don't know that nurse's name who held me and prayed for me but I know she was a gift from God. She made me remember that He has been with us every step of the way. I made it off the operating table with a successful surgery, and made it through the frustrating logistics of hospital paperwork. My pain and discomfort was controlled with medication and the earlier blood and bladder issues resolved themselves. I was blessed to have a good room and a bed beside the window so I could see the sun. As I went home, God provided us with family and friends who gave us food, support and love. We were showered with prayers and although friends don't always understand the depth of what I'm going through, they are there to support me and Adrian no matter what.
I am home now recovering. Still taking the needed medication and still requiring further testing, but I am home and I am improving. Looking back on these past days, I can choose to focus on all the struggles and pain and frustrations or I can see God's glory and grace throughout every circumstance. I truly felt the power of the prayers our loved ones were praying on our behalf and I may not see what goes on in the spiritual realm but I know in my spirit, God was protecting me from things I can't even imagine.
We don't know what the future holds for my health and wellness but we do know that we are covered in the protective love and grace of our Heavenly Father who is ever present. We made it through another surgery and have made it out the other side, not untouched but with a deeper trust and wonder of the incredible God we serve.
I don't recognize myself these days.
I look in the mirror and see a strange woman, that slightly resembles the Erin I have always known staring back at me. So many things have changed.
In the last 6 months, being on high steroids I began to notice major hair loss. I've never had very thick hair, but this was way more than just post baby hair loss. Clumps would lie in the bathtub after a shower, my hairbrush was always full and attempting to "do" my hair was getting trickier and trickier. I lost all my bangs in the front, and while keeping my length at the back, all that was left up top was random wispy hair that wouldn't straighten properly or be styled in any way. One day after attempting to look nice for some occasion I sat down on the toilet lid and cried. I hadn't noticed how drastically my hair had changed and it seemed to hit me all at once and I was devastated.
I called my mom and poured out all my feelings and hurt. I knew it was just hair, but it was my hair and it was part of who I am. After that, I didn't want to leave the house. All I could do was pull my hair into a bun and wear a thick headband to cover the front. I decided then that I was going to look into hair pieces and see what my options were. I soon discovered that hair pieces (wigs, toppers, implants etc.) have come a long way and can be quite nice and look very natural, although admittedly quite pricy. My incredibly generous parents volunteered to buy me a wig. A beautiful thick shoulder length blonde wig, styled with long side bangs. I immediately felt like a new woman. I walked out of that shop with a new spring in my step and a smile on my face.
Looking back, I feel embarrassed for being so concerned with something as trivial as hair, but I don't regret wearing my wigs or trying to look the best I could with what I had. I realized that God was trying to teach me something bigger than vanity. I had to learn I was placing so much of my identity in my looks and in what I saw in the mirror, instead of the truth that my identity alone, resides in Him and who He says I am.
With medications that give you a ravenous appetite and additional weight gain, I've put on over 35 pounds. My face is moon-shaped and stomach extremely swollen making me appear 6 months pregnant, and all trace of my somewhat lean and toned body has been replaced by saggy (post surgical) skin, stretch marks, and major fluid retention.
I have to admit that this season is hard and humbling. I never realized how much of my identity was in my appearance. From my thin patchy hair, to my swollen toes, I see a completely different person than a year ago, but God is teaching me that I need to release that to Him and try to let His peace surround it. One day I pray to be off some of these medications and perhaps the side effects will dissipate. However I'm daily asking Jesus to help me see myself as He does. I pray He aligns my heart so that I wouldn't grieve a seemingly "ugly" body, but instead grieve an ugly or unattractive heart. This is what I want to focus on; seeking Jesus more and more to sanctify me and mold me into the woman He wants me to be. To shift my focus from frowning in the mirror to searching my heart for ugliness that only He can transform, and allowing Him to do it. God knows my heart just as he knows how many hairs I have left on my head. He sees what needs to be changed, shaped and uprooted, but He also sees my hurts, questions and grief and He loves me through it all. I am beautiful because I am His. I am made in His image and while the blessing of society's definition of beauty may not be mine, the blessing of salvation and relationship with Jesus is all I could ever need.
Every day I have to pause and stop the negative thoughts I have about my body. I need to remember the truth about who I am and how blessed I am to have the healthcare I require and a body that can still do so much, though limited. I need to remember that my heart and love for Jesus is what I truly want to see when I look in the mirror.
And that is true beauty.
Over the past several months, my body has been fighting. Fighting off nasty infections, fighting against itself from rampant autoimmune diseases, fighting for energy and stamina, fighting for any sense of health and normalcy. This has been our life, fighting and praying.
Fall of 2018, I became very unwell. I was having stomach issues, bleeding, pain, pure exhaustion. Tests were inconclusive, medications didn't seem to help and I was shrivelling up into this ghostly, thin shadow of a human. My husband Adrian took a leave of absence from work to take care of me and the boys, but I wasn't getting better. While waiting to see a couple different specialists, I stayed in bed most of the time and just survived from one day to the next. I was malnourished, dehydrated, full of infection, in adrenal crisis, and fighting a major flare of my lupus. Finally, at the hospital, we started to get some answers and solutions. My stomach had H Pylori infection that required extensive antibiotics, and after a colonoscopy and endoscopy, they diagnosed me with a severe digestive motility disorder. My whole digestive track was infected and shut down. I couldn't process food and I was in a lot of pain. Once they got my "plumbing" moving again, and started on proper medications, I started to improve. However, they also noticed my body was completely deficient of cortisol
"Cortisol is a steroid hormone that regulates a wide range of processes throughout the body, including metabolism and the immune response. It also has a very important role in helping the body respond to stress" (http://www.yourhormones.info)
It's a serious thing to be in adrenal crisis, where your body is not producing enough cortisol. The condition associated with this, is called Addison's Disease. It's rare and needs to be monitored. It can require being on steroids the rest of your life.
Steroids are a go-to medication for many autoimmune conditions and can greatly reduce immflamation in the body, but they come at a price with many side-effects. Since December (now being June), I have been on a high dose of prednisone (type of steroid) to counteract both my body's immflamation with Lupus and giving my body cortisol to keep the Addison's in check. For 6 months, we have been on a roller coaster of health highs and lows. It became clear in January that I was not going to get better overnight, and what my quality of life was going to look like longterm was a mystery. Prayerfully, Adrian chose to relinquish his contract at work to be home full time for as long as Ontario Disability would allow. We are still in that place today.
In 6 months, I've had a severe stomach infection, kidney infections, pericarditis twice, and a whole bunch of "women's issues". My specialist in Hamilton over this time has been working with us to try to stop my body from attacking itself. We've made medication changes, diet changes, lifestyle changes and slowly we feel we are finally coming to a light at the end of the tunnel. I have good days and bad days. Sometimes I wake up with lots of energy and feel ready to conquer the world, but if I'm not careful, the next day I won't be able to get out of bed. I've been learning a lot about contentment and surrendering my body, my time and my abilities up to Jesus. Some days all I can do is lie in bed, but even in that, I can bring Glory to God. It's been something the Holy Spirit has desperately trying to teach me through all of this, and I still have a lot to learn, but these months of trials have been so true to what James talks about in the Bible. Trials do refine us. They grow our faith and pull out unhealthy roots, to one day produce good fruit in its place. The joy and peace God has lavished over us in this time has been indescribable. Yes there are days of tears, sadness and frustration. We grieve, wrestle and wonder why, but ultimately we know we're right where we are supposed to be, in the palm of His hand.
Our church community, friends, and family have banded around us both physically and in prayer. Most of them don't understand the depth of what we've gone through and are still going through. They don't know how many hospital trips we make on a regular basis, or the dozens of medications I rely on. They don't see the pain and exhaustion or that some days we are barely holding it together. Dozens of appointments, infusions every 3 weeks, so many IV pokes that my veins are becoming unusable, ambulance calls, fainting spells, random bleeding; these are just glimpses of our reality, all while raising two little boys, and remaining in leadership in our church.
Sometimes it feels like my whole life is a battle. A fight to get up and face the day not knowing what my body will do. A fight knowing when to push myself or bow out of a situation. A fight against isolation and loneliness, and a fight for my mind and heart to focus on Jesus and not my circumstances. It's hard, and more often than not, I revert to my self-centredness and ask "why me"! I forget that everyone single person has their own burdens to carry and heartache to deal with. I forget that my pain is temporary on this earth and one day God will give me a glorified body free of sickness. I forget that so many souls face much harder struggles than I do and still get up and go to bed with God's praise on their lips. I forget that it's not all about me.
So this is where I am. Taking things day by day. Trying to give each moment to Jesus and practice His presence, be in His Word and let Him guide my steps. I don't know what's going to happen with my body. Will we get the immflamuation under control? Will I get to a place of "remission" or relief from the symptoms? Will I be able to get off some medications that are very hard on the body? Will I ever be able to confidently and safely take care of my children on my own again? I really don't know, but I've learned stressing about it, and trying to push my own agenda just makes things worse. God tells me (and all of us) to surrender; lift up the good and the bad and trust in His sovereign plan. Where is this journey going to take me and my family? I really don't know, but I do know that God is already there, calling me into His arms.
Gabriel and Elisha (pronounced El-iii-sha) are my baby boys. My two miracles.
We found out we were pregnant with our firstborn around our 1 year anniversary. At only 23, I was a very young mom by today's standards but I didn't care. I was thrilled. However, I soon learned pregnancy and parenthood is not the walk in the park I had envisioned.
I grew up watch 19 Kids and Counting. I enjoyed watching them live out their faith through life's ups and downs. While I didn't agree with everything they said or did, I admired their convictions and love for children and their seemingly always united, happy family. I wanted that picture perfect family life too. Not having the easiest childhood, I had all these high expectations and fantasies on what motherhood should look like and what ours was going to be, starting with pregnancy. I was going to have a totally healthy and enjoyable pregnancy and it would be such a wonderful experience with cute maternity outfits and baby showers. Birth would be a tough but magical (not to mention fairly pain free) experience, and we would walk off into the sunset as a perfectly happy family, living a wonderful life for Jesus.
Let's just say, I got a rude awakening.
Hyperemesis Gravidarum - Or known also as EXTREME morning sickness, that lasts all day, all night, and all pregnancy.
It wasn't an exaggeration to say I couldn't keep air down. Shortly after the stick turned pink, the nausea grew worse and worse. I knew morning sickness was common for the first little while but this was way more than a bit of nausea and the occasional vomiting. Nothing could keep my stomach from turning and I ended up in the hospital (first of many trips) at only 7 weeks pregnant, for complete dehydration. They give you this supposedly successful nausea medication for pregnant women called Diclectin, but I might as well have eaten smarties. Gravol? Nope, that didn't work either. Ginger-ale? Peppermint tea/oils? Motion sickness bracelets? You name it, I tried it.
I was working part time as a youth pastor, and did my best to keep up with all my usual responsibilities but constantly needing a barf bag made things difficult. The only thing that helped was a medication that is normally given to cancer patients receiving chemo, to deal with the nausea. It was a wonderful relief, but having no healthcare coverage meant we had to buy it out of pocket and it was extremely expensive.
So, we did our best and I learned very soon that although some women have very easy pregnancies, mine was most certainly not going to be. When pregnant, your hormones go nuts, and you cry at the drop of a hat. You crave corn dogs (eat 6 in one sitting) then throw them up for the next 2 hours. You lose all dignity at the doctor's office, including weighing yourself in front of the entire waiting room. Complications arise like Cholestasis (liver issues), chronic illness flare ups, and the need for a c-section. Your back constantly aches, you cant sleep without an expensive body pillow, giant veins pop out, you pee every hour, you're completely exhausted and after that first "He's kicking!" experience, you feel like a wrestler is trying to rip open your stomach.
That all said, pregnancy is truly a miracle and a gift. I'd do it all again, even my second pregnancy which was far WORSE than my first. There are so many women who cry at night for the baby they'll never carry in their womb, or the ones they've lost. My heart breaks for those families and for ones desperately spending thousands on fertility drugs, waiting and hoping to receive a positive test. Dear sisters if that is you right now I am so sorry for this hard path you are on and I pray you will feel the comfort God has for you and to trust in His love. I can't know your pain but I cry and pray along side you, as we live in this broken world with so much heartache. I know it's not fair why some things do or don't happen, but I also know that Jesus can and will fill any void if we open our heart to Him.
I thank God every day for my children, and I pray I never take for granted what a miracle they are. That someone with so many health struggles could conceive, carry and birth two healthy babies. It wasn't easy, in fact with Elisha both of us almost died, but we trusted God to know the timing of if or when to have babies. We trusted that although everything seemed to be completely backwards from what I'd hoped, God knew what He was doing.
There are many things I learned through pregnancy and my two births, but looking back, one of the first lessons I needed to understand was that parenting is hard work. This is not something you do passively. This is a calling that requires great sacrifice. Those 9 months pushed me to new and harder limits. I can look back now and smile at my days of carrying a bucket around and begging Adrian for another back massage to ease the discomfort, but I know God was doing far more behind the scenes. Growing me spiritually, mentally, (and physically) to be able to be the mom I need to be. I'm not there yet. Not by a long shot, but I can see those were the first baby steps God used to shed some of my selfishness.
My babies are not babies anymore. We are in full on toddler days, filled with tantrums, learning and fun. I love discovering how as they grow physically and mentally, I'm growing too. From the first moment of conception, to the minute we take our last breath, God uses parenthood to shape us, use us, and sanctify us. It's an honour and a privilege to be Mommy to these two boys. By God's grace, I pray I'll one day grow into the woman, wife, and mom I'm called to be, all to the Glory of God.
There is no perfect pregnancy, perfect family, or perfect life, but there is a perfect God who takes the hardships and turns them into blessings. He is the author of our stories and the perfecter of our faith. In all the messiness of life and all the mistakes I make in motherhood, I rejoice knowing I'm being parented by the perfect Father, and I can trust in Him.
What happens when you don't "get better"?
When you get the stomach flu, you throw up, take gravol, nibble on saltines and remind yourself it will be over in a day or so. Or when you break a leg, you hobble around with crutches, waiting until the cast comes off. With health problems, there is usually a day when it' "gets better", but what do you do, if it doesn't?
This is a question that has been rolling around in my mind for awhile. I've realized that even with the multiple diagnosisses of chronic illness, I've been viewing my health problems as recurrent events. I have a flare, or something happens and it takes time to "get better" then I move on, and the cycle repeats. In one way I thought it was a healthy perspective, because I wasn't considering myself as "ill", just going through sick seasons. What I've learned however, is with that mindset, every time I get "sick" I get discouraged all over again and just try to survive until the next season of "wellness".
Am I sick? Am I well? Anyone with chronic illness will tell you, you're never fully "better". Your body isn't likely going to be symptom free. We have good days and bad days. Sometimes the good days last awhile and sometimes they seem few and far between. It's a cycle. A draining and frustrating circle. A whirlwind of doctor's appointments, medication refills, and balancing what you can and cannot do.
My cycles are severe. My lupus gives me chronic pain, exhaustion, and inflammation that attacks my internal systems, causing organ damage, kidney stones and more. CVID (Common Variable Immune Deficiency) means I don't have a working immune system. I get an IVIG transfusion every 3 weeks, but even with the antibodies from donated blood, I still get sick a lot. Hemiplegic Migraine Condition gives you debilitating migraines that cause stroke like symptoms. They can be as mild as some tingling in your arm or as severe as paralysis and seizures. Recently, I was also diagnosed with Addison's Disease, meaning my adrenal glands don't produce enough steroid hormones, causing stomach problems, hair loss, weakness, mood disorders and more. These are also on top of eye issues, which require ongoing care. With all these illnesses interacting together, things can get very complicated.
Since my second son was born in May 2017, my health has been in a severe cycle of crisis. I had trouble controlling my health before my boys were born, but pregnancies are very hard on a body and recovering from having two babies 14 months apart made things much worse. I can't count how many times I've been in the hospital in just two years. I've had terrible infections, haemorrhages, crippling anxiety and depression, kidney stones, severe abdominal pain, paralyzing migraines, countless tests and referrals. I've had to be held down screaming by nurses for them to perform scopes, as my body doesn't respond to sedation. I've had more IV's, needle pricks, and pills pushed into me than one could ever count. One hospitalization, they ran out of the usual places to take my blood, so they used my foot. I've been in the ICU, on bedrest, and told a few times I may not survive.
I'm not telling to get sympathy or pity. It's also not about me whining or playing the victim. This is my reality. Every morning I wake up, and these struggles are what I face. I know others wake up to major health issues every day too, and many much much worse than mine. That is their reality too. I take over 40 pills per day and see different doctors multiple times a month. I way my pros and cons with everything, to decide if my body can physically handle what I'm considering. I never know if something will trigger a crisis or bring a new issue to the table.
To summarize, I have a broken body.
I also have two little boys (almost 3 and 2), an incredible husband, loving and supportive family, church ministry and purpose. I have true joy in my life, freedom and salvation through Jesus Christ. I have so much to be grateful for. I get to be a wife, a mother, a daughter, a friend. I get to be an ambassador for Jesus, sharing His love to others. I am provided for. I have healthcare that is free and systems in place to give me an income. My life is full and my needs are met.
Yes, there are things I wish I could do, and sometimes my health feels like a cage, keeping me away from good things in life. But I'm learning that I can see these trials as limitations or opportunities. It's hard on me that my boys have to see their mother in bed instead of caring for them sometimes, but I know it'll teach them compassion and the need to rely on God as their strength. I could wish to be out serving overseas with other missionaries who are passionate about spreading the Gospel, or I could accept and embrace that we need the Gospel to be shared with people right around us, including our nurses, doctors and pharmacists. I struggle sitting on the sidelines when I could be volunteering at events or taking on more responsibilities, but I'm learning that I can be an encouragement and voice of truth to others while sitting on my living room couch.
Almost daily I have to ask myself, do I give in to self pity and hopelessness for what I don't have or do I embrace all the incredible things I do have? I wish I could tell you I always have the right attitude, but it isn't true. There are some days filled with many tears and times of grieving for what I've lost or wont ever have. When those tears fall I'm so thankful for God's unending grace that covers us. He knows my heart and my pain. He knows my desires and capabilities. He knows the path He's laid before me, and I need to rest in that truth, because I know His path has the utmost best in store for me, even if that means heartache on this earth.
My body is weak and sick, but Jesus makes my spirit strong. I'm writing this post in my pjs, on my bed, covered in blankets because I don't have the strength to do anything else today. Today is not a "better" day, but I've decided to not swing from good to bad anymore, because no matter what my body is able to do, through Jesus I can accomplish exactly what He wants me to accomplish. For he has given me everything I need to accomplish what He desires in every season, including day to day life. So instead of feeling good and dreading the next crisis, or being in crisis and longing for the next wellness, I'm going to see every day as an opportunity to obey God, to follow His leading and dwell in His love. Facing the fact that I may never "get better", I choose to be okay with that. Because when we trust that God is good and in control, nothing can steal our joy and purpose, not even a broken body.
Working to pay the bills but also making your family a priority.
Eating healthy meals but not obsessing over everything that goes in your mouth.
Being active and faithful to exercise but also allowing time for rest and relaxation.
Practicing self-care without becoming self-focused.
We deal with this concept everyday. It's a topic that doesn't have simple answers and what may be a balance for one person may not be for another.
As a Christian ( a Christ follower), I try by God's grace to "balance" the areas of my life through Biblical eyes. God says to "seek first the kingdom of God and his righteousness" (Mathew 6:33). So first and foremost on the priority list is my relationship with Christ and advancing His Kingdom. Next comes our family with Christ being at the centre. "For if a man cannot manage his own household, how can he take care of God's church" (1 Timothy 3:5)? And in the family, because marriage makes you one flesh, your first priority is your spouse (Gen. 2:24), followed by your children (Eph. 6:4), and relatives etc.
These Biblical priorities help us set up the framework for our work, ministry, and home life in a balanced way, but we know it isn't always that easy. It takes huge discernment to know how to identify God's boundaries in every situation. When to stay at church to help prep for an important event or go to your child's soccer game. How to navigate the many needs of your new baby and try to prioritize time for your spouse. Where to draw the line on providing for your family's financial needs and spending quality and quantity time at home.
Only by following the Spirit's leading can we answer these personal and ever changing situations we face. It's a daily discipline to discern God's will for our walk with Him, our families, our work, our ministry, and our days. Sometimes it's minute by minute, hour by hour, asking the Spirit to show us what to to do when the Bible hasn't given us a simple black and white answer on a particular decision.
I find that very hard, and it's a discipline I'm not even close to mastering.
Then we bring in a new factor, chronic illness.
In high school, I would stay out late, participate in several extra curriculars, hang with friends whenever possible, and in general just be busy! I lived on a couple hours of sleep a night and I functioned fairly well. Yes, I was dealing with some health issues, but they weren't a huge concern for me at the time. I just lived. Then post high school, I worked for a year before going to College. I lived with a friend and worked 2 full time retail jobs. I would start at 6am at Payless ShoeSource until mid afternoon, when I would work until 9:30pm at Laura Secord, and then go out with the staff at night. I was living it up. However, during this time, my health really began to decline. I started going to one doctor's office after another and I knew my undiagnosed symptoms were getting worse, but I didn't let it slow me down. You can guess how that ended...badly. Several months after living this lifestyle of work/play all night and all day, my heath did a nosedive. I had to break my lease on my apartment, making a huge financial mess and destroying my friendship with my roommate. I moved back home with my parents and spent most of my time in bed.
During this time, I was treated for Lyme Disease and depression and I basically spent each day just getting to the next day. Day by day over many months, my mind and body got stronger. I had intense treatment and therapy and got back on my feet. I was able to go to college for Business Administration and even get an office job afterwards. During this time, my high school sweetheart and I got married and started our life together. The diagnosis of Lupus really helped me understand my limitations. I was able to recognize what I should or shouldn't do to keep symptoms at bay. It took trial and error and several hospitalizations, but I felt at that time I knew my "balance" in life. I decided for my health, a 40 hour work week just wasn't sustainable and I had to have limits on activities. I learned to swallow my pride and say no to things, and accept that people may not always understand. I learned that if I wanted to do the things God was asking of me, (I was a part time Youth Pastor at the time), I had to say no to other things I wanted to do. During that short season of life (2 years), Adrian and I had so many incredible experiences together. We experienced the joy of being newlyweds, working as a team in ministry, discipling young people, growing in our faith, and really learning about the Gospel in our daily lives. We are so thankful for those years in our little basement apartment in Brantford where we served Jesus together. It was a beautiful short season that God used in powerful ways. I'm grateful to look back and see how God lay the groundwork of balance, letting go, acceptance, surrender and obedience. He needed to lay the foundation of healthy and Biblical priorities in my heart because He knew in a short time, my idea of balance would be challenged and stretched like never before.
Fast forward 2 years - We live in another city, serve in a completely different ministry, currently pursuing deeper paths of Kingdom living, and are raising two little boys aged 2 and 1. Our lives are totally flipped upside down and believe me when I say, in this new season, I don't have the "balance" thing figured out yet!
How do you know what is real?
To quote the Matrix "If real is what you can feel, smell, taste and see, then 'real' is simply electrical signals interpreted by your brain."
I love to be the centre of attention. I love birthdays and praise and admiration. Being affirmed and words of encouragement are definitely a love language for me.
Children need attention. They spell love, T-I-M-E. They need their parent's love, support, understanding, guidance, and encouragement. When they don't get this kind of positive attention, all that's left is negative attention, and I jumped on that bandwagon pretty early.
At birth, I was born with eye problems that required a lot of doctor's appointments, surgeries and comfort. As I grew older and puberty began to hit, other things came up. Joint pain, strange rashes, recurrent infections, exhaustion, migraines, memory issues and more. It didn't take long in my childhood for me to clue in that when I was in a health crisis, I got attention.
My parents loved me and my brother. They worked hard to give us a comfortable place to live and did their best to give us the time and attention we needed, but life doesn't always happen the way we hope. Working as a full time RN, my mom wasn't around very much and my dad worked a lot too. When they changed jobs and became involved in full time camp ministry, things really changed. It was a 24/7 lifestyle. Our house was onsite and for 5 years, I saw more of the staff than my parents. I'm not laying blame. There has since been so much growth, understanding and reconciliation on both our parts and forgiveness is so powerful.
During that time, I felt more alone than ever. Don't get me wrong, there were great times too and fun memories of camp life that I'll always treasure. But I wasn't parented very much. I grew and tried to figure things out for myself, and I got a lot of things wrong. When my new health problems began to arise, it was like I was finally being noticed again. My parents swarmed around me like flies as we tried to figure out what was going on. From the paediatrician, to the allergist, to the immunologist to the infectious disease specialist. The list went on. No-one really had an answer. Blood tests were positive for some things and negative for others. Symptoms would come and fade and come again. I started to wrestle with this concept of "sickness gets me attention, but this is not fun and I want it to stop." I battled that a lot.
As a preteen and into my teen years I was a drama queen. I completely admit it. I would ham up a situation, or exaggerate a story quite frequently. I'm not proud of my past but am so grateful for God's grace. I poured my heart out to Him long ago about my lies (because they were in fact lies) and my manipulative behaviour. Jesus' blood has washed me clean and I'm so thankful I can lay it all at His feet.
Sometimes it was hard for me and people around me, because they knew I liked to dramatize things but I also had some very real and scary physical symptoms happening. So what was real? We battled for years looking for answers and each doctor seemed to have their own opinion and treatment. Looking back, I know there were some friends and even family who thought I was just hamming it up again, and I couldn't blame them. I had blown the trust on that but I knew these things were real. I have pictures of me at around age 15 with a rash covering my whole body. My eyes were swollen shut, my joints so inflamed that it was hard to hold a pencil. And this went on for months, then years. After high school, things really started to slide downhill. I was sick ALL the time. I would catch a cold and it would turn into pneumonia. I was in the hospital getting IV antibiotics regularly for infection after infection. I couldn't keep food down and my joint pain was so bad, I barely moved. I was scared.
My parents and I finally had enough of fighting for answers and decided to act on one doctor's advice. At Sick Kid's immunology department, one doctor suggested I might have Lyme Disease. I had most of the symptoms and I had lived at a camp, so the pieces fit. Trouble is, Canada at the time didn't take treatment for Lyme very seriously. The doctor gave me 30 days of oral antibiotics and said that should cure it. Well it didn't. We decided to do our own research and remembered that we knew a girl who had Lyme. She required extensive treatment that the US was using on Lyme patients and it seemed to work. So we contacted a specialist in Buffalo and took a leap of faith. For 3 months, we drove there daily to have my blood removed and oxygenated, IV antibiotics, physical therapy and be in a hyperbaric chamber. My diet and lifestyle was totally changed and you know what? I started to get better.
I am so incredibly thankful for Canada's free healthcare system. It's not perfect but I'm so grateful I can be admitted to hospital and know I won't come home to a $15,000 medical bill. This treatment I was getting however, was even more expensive than that. My parents did all they could to pay for this treatment as long as possible but we finally had to stop because it was just too much.
I remember being with a 14 year old girl at the clinic in Buffalo. Her family lived in Ontario as well, and the parents took out a second mortgage on their home to give their daughter this treatment. She was almost completely paralyzed from Lyme Disease when she first came to the clinic and it was a privilege to see her begin to walk again as treatment went on.
Being in Buffalo and doing that treatment really seemed to do the trick. I had life to me again, energy and eagerness to actually move forward, and for about a year that's what I did. I wish I could say that was the end of my health problem journey, but it wasn't. Familiar symptoms began creeping back up, and new ones started. We felt like we were right back where we started.
Looking back, I know that wasn't true. We went through a tremendous amount during those years but we learned a lot. My parents and I grew together during that time. We discovered a lot of the brokenness in our relationship and were able to repent and seek forgiveness from each other. We started to heal from old wounds that happened before and during the camp years. I was able to confess my brokenness and sins I committed as a teen and young adult, and I was able to mature from a drama queen to something more. It was the during this time that Jesus began to pull on my heart. Slowly stripping away the legalism and false religion I was stuck in.
It was the first of many lessons in knowing my true identity. Not as a lonely little girl, a dramatic teenager, a victim, and not as a sick person. God began to show me, I am His and He defined me.
I'm still learning that lesson today. I'm constantly being reminded of who I am in Christ and I need those reminders daily. Those strongholds started in childhood aren't easy to break but God is faithful and full of grace.
A couple years later I was diagnosed with Lupus, Common Variable Immune Deficiency, and Hemiplegic Migraine Condition. Three big diagnosises. I finally got the label we had searched for to put with all the symptoms. After all the years we finally had our answers, but you know what? It didn't matter as much anymore.
For years I NEEDED a diagnosis. A diagnosis would prove I wasn't faking, that it was real. I thought it was the answer. True, I now have the treatment I need and the proper tools to manage my illnesses, and that has been a big blessing, but I didn't need the diagnosis for the reasons I thought I did.
Being honest, 100% honest isn't easy, and trying to be completely in-tune with your body in that way is even trickier for me. So what is real? What's real is that I'm a child of God who sinned by using illness to get the attention I craved. What's real is that I'm forgiven. What's real is that my body has limits, big ones that do exist. And what's real is that neither the sin nor the illness defines me, God does.
4 weeks old.
That's how old I was when the first medical crisis started. My dad was changing my diaper and noticed my left eye wasn't responding to light or movement. Unsure of what to do, the Paediatrician set us up with an Ophthalmologist, and I was quickly diagnosed with a Cataract. At one month old, I had my first operation. They removed the lens in my eye and began putting a contact lens on top of my eye. Several months later, the other cataract developed and they repeated the surgery on my right eye. Two more eye surgeries followed in the next couple years to remove scar tissue and tighten the muscles. I've worn contact lenses on my eyes ever since.
Looking back, my parents joke about how the neighbours must have thought they were torturing me every morning and night as one of them held me down, screaming while the other placed or removed the lenses. In those days contact lenses were relatively new and quite finicky. They were a rounded, hard, plastic-like lens that if not placed perfectly on the iris, were quite painful. They were removed each night by a tiny little plunger that suctioned them off of my eyes. For many years, to not mix them up, they were given two different colours. Most of my pictures of me 10 years and under, are of me with one blue eye and one green eye.
Next came the eye patch. After the cataracts were removed, poor vision remained, and my left eye was substantially stronger than my right. To improve my vision I wore an eyepatch over my left eye to strengthen the right. How I despised that eye patch! It was itchy, hot and pulled my skin, not to mention made me a target for onlookers with questions and jokes. Once standing in a line at the bank with my mom, a man behind us looked at my mom and said
"So did you punch her eye out?"
Kids were more curious than cruel. I would get asked if an eyeball existed behind that patch on a regular basis but I didn't mind. Sometimes I would even come up with silly responses to freak them out.
"Oh no, not behind the patch, but I do have it here in my pocket!"
It was just part of my daily life and we learned to deal with it all. My dad had a hard time getting my lenses in and out (he was the one who'd pin me down while mom did the lens job), so on nights when mom was working, he would pack me and my brother up and drive to her work so she could take them out there. It made things like sleepovers and being watched by babysitters tricky, but we made it work. Eventually technology improved and lenses became more like the soft pliable material we use today. I was then able to put them in and out myself.
Along with the cataracts came an eye condition called glaucoma, which means the eye has a high build up of pressure from the fluid. Every 6 months or so, we would make the trip to Sick Kid's Hospital to see Dr. Levin. He performed a few of my surgeries and remained my doctor for several years. I would take eye drops to keep the pressures down and he monitored them closely. My other doctor who maintained my contact lenses was Dr. Brent, a kind and caring man who actually was part of the team to first use them on children. He was passionate in his field, extremely intelligent, and so gentle. I never left his office without a handful of smarties. I continued in his care until his retirement in 2016.
Other specialists became involved and I was bumped around to handle issues that came up over the years. Further surgeries were needed to tighten my eye muscles, correct double vision and combat my glaucoma. I was even once involved in a clinical study to advance research on children born with cataracts. My parents did genetic testing when I was a baby but no explanation was found as to why my eyes are the way they are.
Did God make me this way on purpose? Were my eyes just defective? Is it just a result of living in a broken world? I don't have the answers either, but I do know some things.
I know if I had been born 50 years before my time, I would have grown up blind.
I know God doesn't make mistakes.
I know that I appreciate my eyesight everyday. There are many children who were and are born like me and aren't able to get the care I received, and even some that did, are still considered blind.
I know that God works all things for good and that He used the struggles we went through to tell a story of redemption and provision.
I also know that our bodies are a gift, a beautiful and complex gift and all of us are fearfully and wonderfully made.
I don't know what the future holds for my vision. I still see doctors who monitor my sight and pressures and I know more surgeries will probably happen as some point. Will I keep my vision for the rest of my life? I really don't know. Some doctors have told me it will deteriorate with time, others say my glaucoma could suddenly knock it out all at once. What I do know, is that God has given me the ability to surrender it to Him. I pray that I will see our children get married, our grandchildren be born, and my husband's stunning eyes as a 90 year old man, but I trust that even if those things don't happen, I will be okay. My sight was a miracle as a 4 week old infant and it'll be a miracle for the rest of my life.
Author - Erin
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.