by April | May 12, 2012 | Chronic Illness, CVID, Thankfulness
I’m sure there are a lot of blogs about Moms going up this weekend. And I’m no exception. But, I’ve got a bit of different take.
A year and a half ago I became a different kind of mom. I’m now a mom living with chronic illness. Up until then, I was a get-er-done mom. A homeschooling mom. A supportive mom. A writer mom. I kept a fairly clean house, I kept us organized and on track. But then, my CVID (Common Variable Immune Deficiency, or Hypogammaglobulinemia) went full-blown. And I went down. Hard.
I’ve had to change my idea of what a mom is and what a mom does and adjust my expectations. My kids have always been good kids. Thoughtful and considerate. But, things have changed with them during all this, too.
My kids notice when I don’t feel great. They tell me to go sit down. They take tools out of my hand and say, “That’s enough, Mom.” My daughter, in particular, will tell me to go lay down, sit down, stop. One particular day, I must have looked pretty done-in because after my daughter told me to go lay down, she proceeded to cook our dinner, get it all served and get her and her brother ready to go. I woke up to steak, potatoes and a salad. I have to admit, it tasted ten times as good as normal because she made it for me.
My kids are a huge blessing to me. I’ve often apologized for not being able to do more things, for not being able to keep up—but they just tell me, “It’s not your fault you’re sick. We love you.”
SO, this is a blog shout-out to my kids. I know it’s not easy living with a mom who gets worn out unexpectedly, who tells you to take a bath whenever we’ve been out in public (to protect us from germs I can’t fight), who won’t let you go certain places because you might get exposed to things—and most painful, who can’t hug you when you are sick. I know it’s a drag when I can’t run off to the park when it’s pretty out because my energy is already spent by noon. Or play games as often. Or, well, fill in your blank.
I hope you know how much I love and appreciate you both. How blessed I am to have you both in my life. I thank the Lord he gave you to me.
Psalm 173: 3-5 Children are a heritage from the Lord,offspring a reward from him.Like arrows in the hands of a warrior are children born in one’s youth. Blessed is the man (woman) whose quiver is full of them. (full text here)
by April | Jan 18, 2012 | Chronic Illness, CVID, Encouragement, Expectations, PIDD, Thankfulness, Writing
Sometimes, I find it hard to write. Some days my head is so wrapped up in my own troubles, it’s hard to think clearly. I’ve been having such a time for the past couple weeks (thus my lagging blog).
So, here’s what’s up: At long last, after months of waiting and dealing with insurance companies and changing doctors and confirming diagnoses with second opinions, I’m getting ready to start treatment of my CVID (Common Variable Immunodeficiency). The intro packet from the medication company has arrived (still have to watch the how-to video), and I was just called and told my medication and pump will arrive on Friday. The last step is waiting for the nurse to call me and set up three training sessions.
It’s been a struggle getting here. And now that the day is near…I find I’m filled with trepidation. This is a life-long treatment—one I’ll have to do weekly, and that will cost a lot of money. Questions fill my head: what if it makes me feel worse? What if it doesn’t work? What if this is the quality of my life for the rest of my life?
I’m not often led by fears. I admit I don’t like the unknown. I like to know what’s coming, which is probably why I’m not excited about this. Logically, I know that I should put my hope in the unchanging love and care of the Lord. But, sometimes, logical thinking doesn’t help keep my emotions in line!
After joining a PIDD (Primary Immunodeficiency Disease) support group, and hearing some of their trials and challenges, I realize that God has orchestrated a lot of things in my life to get me to this point. I’m thankful I’m not sicker. I’m thankful that I live within an hour’s drive of my immunologist (many folks have to drive 3+ hours to see one experienced with PIDD). I’m thankful that God has provided the money it’s going to take to pay for this. I’m thankful that I’ve got an excellent primary care doctor after many years of searching for that right connection. I’m thankful my doctors listen to me (this is a rarity, unfortunately, for many PIDD sufferers). As the list I type continues, I’m seeing a pattern here—that God does indeed have things in hand, and that I need to rest my fears on Him instead. I’m so thankful that I can.
I’m reminded that the Lord knows I was born with this. He’s known what is coming my whole life. He knew I’d grow more ill over time, knew where I needed to live to get good treatment, knew I’d need a wonderful supportive husband and kids–knew this was going to be hard. Although we aren’t near our families, we’ve been mightily blessed with supportive, praying friends nearby who understand and are there for us. You know who you are—thank you doesn’t begin to cover it. But, thank you.
When you feel afraid, how do you remind yourself of God’s ongoing provision in your life? I’d love to hear from you.
Romans 8:31-39 What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:
“For your sake we face death all day long; we are considered as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (read the whole passage here)
by April | Nov 28, 2011 | Chronic Illness, CVID, Encouragement, Prayer, Thankfulness
In my last blog, I posted that people with chronic illness or pain have been through the gamut of trying to find ‘the thing’ that will heal them and how it can be hurtful when others try and force their ‘cure’ on them.
Let me be clear—I’m not speaking about people that want to come alongside the hurting and help. I’ve had many loving suggestions from caring friends. Most of those conversations were respectful and kind. I don’t know of anyone who takes offense at loving suggestions. I can tell they are loving because when I respectfully decline they say, “Okay.” And the suggestions stop.
If you fall into that loving category—thank you very much. And especially, thank you for the following: The most valuable comfort in my time of illness has been the friends and family who come and sit beside me in this trial to pray. And to listen. I can’t tell you how wonderful it is just to have someone listen and empathize.
Prayer. Seems simple enough. Unfortunately in our culture, it’s often the last ditch effort. We are doers and fixers. You’ve got a problem, they’ve got the solution. But, when the solution doesn’t work…well, you might have heard the following: “I can’t do anything for you so I’ll pray.”
It’s been said that God doesn’t often change our circumstances, but He does change our hearts in those circumstances. It’s so true. When I submit myself to Him, He gives me strength for that moment. I’ve often been in tears from exhaustion early on in the day. I’ve lost count of the times I’ve cried out and said, “God, I just need to get the laundry done, please help me.” Soon after, I’ll have the strength to do the laundry. Now…if you would have told me twenty years ago that I would be praying for the ability to do laundry (which I hate to do as much as the dishes), I would have laughed in your face. But today, it’s a different story! Taking care of my family is part of who I am, and not being able to do rudimentary things, like laundry, wears me down mentally and spiritually.
Prayer isn’t a magical incantation, and it isn’t manipulation of God wherein we say just the right thing at the right time in the right way in order to make God change His mind and do what we wish. Rather, it is powerful because of the One who answers according to His good will and purpose for our lives. And that’s what I desire: God’s will and the strength and wisdom to endure whatever it is I’m going through.
When you offer prayer in times of trial and a listening ear, you are the hands and feet of our Lord. I’m so grateful for those around me who have been there, praying and listening as we go through our trials. Thank you!
Philippians 4:6-7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Full text here.)
by April | Nov 20, 2011 | Chronic Illness, Encouragement, Immune Deficiency, Thankfulness
I’ve been thinking of something for a few weeks now, ever since someone quoted a Bible verse to me about being perfectly and wonderfully made. To the person who quoted it, it meant I should claim wellness. I think they were worried I was ‘settling’ for being chronically ill. I know they meant to be helpful, but it started another round of soul searching on my part. Was I doing everything in my power to be well? The answer, once again, was yes.
Most people are well-intentioned and have no idea what it’s like to be on the receiving end of suggestions, even Biblical references, after they have finally come to an acceptance of their situation, whatever that may be. People who suffer from chronic pain or illness have been through the gamut of searching—so if you know someone who is in that spot, please offer prayer and friendship, but know they’ve been on the journey searching for an answer for a long time, and they certainly aren’t settling for anything. People don’t mean to, but when they insist you try this one more thing, it’s like they’re saying you would try their one more thing if you really wanted to get well—and if you don’t try their one more thing then you are choosing sickness and pain. This is incredibly hurtful.
I’ve spent a lot of my life ill, and in being so, I’ve searched out web pages, done research, taken natural medicines, tried out tinctures and teas, changed eating habits, and took loads of supplements all the while searching for those things that would fix me. Let me warn you, it’s a dangerous road to travel. Several people I’ve crossed paths with have turned their search into an almost religious-like passion. And some try to force their conclusions on others. There is franticness in their lives, an out of control feeling, a grasping for that thing. If you just drink this thing, or eat this thing and avoid that thing then you will have complete healing.
Other good-intentioned folks have said something akin to: “You were made in the image of God, He wants you to be well.” I will say this to that: If He wanted me to be well, you can bet I would be. Right now. Immediately with no action on my part except prayer and petition. DONE. My conclusion is that it is for some reason, for His purposes I am not. Which leads me to my next point that upsets any number of people, and hopefully encourages even more: I’m okay with that. If you’ve been reading my blog, you know that’s not an easy thing for me to say. But, it’s the truth.
Just like most folks, I have a tendency to thank God for the things that make me happy, make my life easier—and I forget that God is in control of the hard things like illness ( or please insert your form of loss or suffering here). Let me assure you, God is much more interested in my spiritual being than my temporary happiness (because my circumstances are always changing). So, I need to look at those difficult things and, because I know God is loving, be thankful for those things as well. Maybe I should be thankful for those things first because it’s during those hard times He draws me close, holds me up and carries me through. As Christians, we were never promised an easy ride—I’m not sure when that false teaching first arose (somewhere in the first century, I’m sure). But we are assured by His word that He never leaves us, nor forsakes us. And that is something to be truly thankful for.
Hebrews 13: 5-6 Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me? (Full text here.)
Paul, who suffered untold poverty, prison, shipwreck, illness, and pain while he lived a life passionately for our Lord shared the following:
1 Timothy 6: 17-19 Command those who are rich in this present world not to be arrogant nor to put their hope in wealth, which is so uncertain, but to put their hope in God, who richly provides us with everything for our enjoyment. Command them to do good, to be rich in good deeds, and to be generous and willing to share. In this way they will lay up treasure for themselves as a firm foundation for the coming age, so that they may take hold of the life that is truly life. (Full text here.)
Philippians 4: 12-13 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. (Full text here.)
by April | Sep 6, 2011 | Chronic Illness, Encouragement, Expectations, Food Allergies, homeschooling, Thankfulness, Uncategorized
Right now, uppermost in my mind, is the beginning of our school year. We homeschool our children—have from the very beginning, and intend to go all the way through high school.
People not familiar with homeschooling usually ask me what the benefits are of schooling at home. First and foremost, it’s created a bond in our family that I don’t think we’d otherwise have. It’s also allowed my children to not only learn about our faith, but see it lived out in our daily lives. God’s definitely not just for Sundays around here. They also have opportunities to try out many different areas of focus—where as the public school system just can’t afford the staff to do that. We hold a belief that God grants each of us a gift—and that gift is to be used to bring Him glory (rather than ourselves). We are blessed to see their gifts growing and encourage them in their use. My son is on his way to being a building or robotic engineer, and my daughter has a passion for drawing and working with children. I don’t know how the Lord will use these gifts, but I do know that if my children are looking to Him, He will.
Every year we begin and I think to myself, “This year is going to be normal.” By that I mean things will go according to schedule with no hic-ups. I don’t know why I think this every year—it has never gone the way I expected. Ever. The first year we formally home-schooled I was pregnant with my second child and, unlike many other lucky mom’s out there (but I’m not bitter), I spent 9 months throwing up about 9 times a day. It’s rather hard to teach like that. Then the next year, we had an infant—this posed some problems. The next year, that infant was a toddler—more issues! Then my health started to go awry. Then my son’s health began to challenge us. That’s been a pattern for the past several years, really. Some how though, through all of this, my daughter, and then my son, learned to read, write, spell, study the Bible, history, science, grammar, vocabulary, robotics, art, and math (these are not listed in order of importance).
There’s a well used verse in Christian circles: Proverbs 22:6 Start children off on the way they should go, and even when they are old they will not turn from it.
These past nine years have held some important lessons for us all. I think all our food allergies and health challenges have brought the idea of God’s providence clearly into view for my children. They are learning from a young age that God is directly involved in all aspects of our lives–and we can and do rely heavily on Him for our day to day strength. God’s word is active and alive in our lives, not just stories printed in a book. Most importantly, prayer isn’t something to do when you are caught in a jam, but an ongoing conversation with our heavenly Father.
SO, what’s this year going to look like? Is it going to be normal? After 9 years of doing this, I think the answer is unequivocally ‘no.’ However, this year, as I learn to put my health in the Lord’s hands, I’m turning over every other aspect in my life to Him as well. What are my expectations of our school year going to be? We’ll be putting one foot in front of the other as we all keep our eyes on Him.
by April | Feb 27, 2011 | Encouragement, Thankfulness
The other morning I heard my husband going in and out the front door. Which was odd, as the clock said 5AM, and he wasn’t supposed to be up yet. I went to see if what I suspected might have happened HAD happened. Yep, it was snowing. We don’t get snow very often in the valley we live in—I think we’re at 150 ft above sea level, so it’s an event when we do get it. In fact, the town kind of shuts down if we get over an inch.
I smiled as I watched him take a photo of the snow swirling down past the orange tinted streetlight. The sound-dampening effects of the snow magnified the stillness wrapping around the neighborhood at that hour. There is no other word than peaceful to describe it. I waved at him, glad to be warm and cozy inside, and raced back to bed.
At that point, I have to admit, I was a bit tempted to wake up the kids. They rarely get to play in the snow. But, I knew if I did, there’d be no going back to sleep. I needed rest to recuperate from illness, and they had been up way too late the night before. I betted on the cold to keep the snow on the ground until they woke up, and then cuddled back down under the covers glad to keep the secret for a couple more hours.
As I began to fall back asleep, something dawned on me. I knew that in few hours my children would be bundled into snow clothes, outside making snowmen and having snowball fights. But I also knew it was in everyone’s best interest that they NOT know what was coming so we’d all get some much needed rest.
How many times have I wished God would let me know what was coming, begged for a Post-It note, a tiny memo? That’s when it settled on me. Like my children unknowingly slumbering in bed, it’s probably for the best I don’t know what’s coming. If it’s positive news, then I’d be so focused on that, I’d miss the good happening around me now. And if it’s bad news, then I’d be so consumed with what was coming, I’d lose the joy I had in my life, living every day in dread.
That message replayed itself in my head this week when we discovered that my husband’s work contract is ending almost two months earlier than it was supposed to. Apparently there was a miscommunication between his contracting company and us—their goof. So, now, he has two weeks to get another contract, instead of 2 months. But I have to remember, while we might be surprised, God isn’t. God knew what was going to happen, and we fully trust He has a plan for our future. Knowing that the Lord of all creation holds us in His hands brings me great comfort.
Psalm 37: 23-24 The LORD makes firm the steps of the one who delights in him; though he may stumble, he will not fall, for the LORD upholds him with his hand.
Psalm 139: 1-6 You have searched me, LORD, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you, LORD, know it completely. You hem me in behind and before, and you lay your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain. (Read full passage HERE)
I’m sure there are a lot of blogs about Moms going up this weekend. And I’m no exception. But, I’ve got a bit of different take.
