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)

So, the other day, during one of his sorry screaming fits, I came out with something brilliant. So brilliant that it convicted me to my bones. “You’re not really sorry. If you were, you’d quit doing the behavior you keep apologizing for, and you’d never do it again.”

Wow. Who said that?

It was one of those moments the flashlight I was shining on him turned back around and smacked me in the eyes. Don’t you hate when that happens? You’re busy trying to make an example out of an issue and it turns out…to be relevant to you.

No, this isn’t one of those dark confessions kinds of blogs. But it was worth thinking on. How many times do I repeatedly mess up and need to go to God and ask for forgiveness for the same thing? Everyone has issues where they fail and need to start over, and thankfully, God’s goodness and grace prevails through the glory of Jesus, and He remembers our sin no more. But I have to wonder…is He shaking His head at me when I ask for forgiveness for the same thing over and over again? Am I like my son, screaming I’m sorry at the top of my lungs just to avoid punishment?

Sometimes, it’s hard to say I’m sorry. I think those are the times we are being the most thoughtful about it—the most meaningful times. When I’m really sorry, it takes me a while to come around to it. I have to put down my ego and my pride and go to the person I’ve wronged. It’s very humbling. It’s life changing. It’s me changing.

 1 John 1:5-10 This is the message we have heard from him (Jesus) and declare to you: God is light; in him there is no darkness at all. If we claim to have fellowship with him and yet walk in the darkness, we lie and do not live out the truth. But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin.  If we claim to be without sin, we deceive ourselves and the truth is not in us. If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness. If we claim we have not sinned, we make him out to be a liar and his word is not in us. (full text here.)

A few years ago, in the middle of a huge windstorm, our fifteen-foot long, twelve-foot high hedge fell over—into the street. It just so happened that my husband was recovering from surgery, and I was unable to uproot it enough to move it out of the way (picture me in a rainstorm in the middle of the street, pulling on a rain soaked hedge). And it had to be moved. So, we called on some friends we knew owned a chainsaw and a truck that could haul it away. We told them how much we needed their help, and they came.

As we were working in the rain, I head a funny noise on the porch. Standing there was my son—age 5—with his very own ‘chainsaw’. He wore his safety goggles and was revving the engine. I almost laughed at the cuteness, but I could see the seriousness in his eyes, so I bit my lip instead. His dad was down, but he, as the other man of the house, was going to do his best to help. I had to explain that his chainsaw wouldn’t quite do the job, but I told him he could help load the branches that were being trimmed down. That satisfied him—but I could see the disappointment in his eyes.

I feel that disappointment some days, too. I have an idea of what I want to do, and how I’m going to do it—I love to help others, I love getting things done. These days, I’m having to learn what I want to do isn’t always what I’m able to do. Talk about frustrating! I never thought I’d be praying for the strength to clean my son’s room. Or praying for patience with myself (from whence my frustration arises!). Or asking God to remind me when I need to take a step back (I’m a push-through kinda gal). There’s a verse that keeps going through my head:

Psalm 121: 1-2 I lift up my eyes to the mountains— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. (full text here.)

When your will meets the wall, what do you do?

I was at the grocery store today, looking for relish that didn’t have food coloring in it. I know…food coloring? Cucumbers are green! Silly companies! Guess what? Couldn’t find any. My thought processes started buzzing. American food companies are following the way of the fashion industry. You’re probably wondering what I’m talking about—try to follow my though process, it can get a bit convoluted at times. American food companies are doing what the fashion industry has been doing for years. They are covering up imperfection in foods with dyes (rather like style mags cover up their models with airbrushing). But…in pickles? I’ve seen homemade relish and pickles—yep, still green. But, dare I say, not green enough? (Just an FYI—the foods the US exports to Europe have to be free of dyes because of a ban they instated due to safety concerns. I’ll let you ponder that one.)

Now, take a leap with me: our striving to cover up imperfection can get in the way of our spiritual life. A lot of people get so focused on the surface, they don’t ever take a peek inside. They are worn out trying to live up to other’s expectations. They are exhausted trying to be perfect and to do it all. People might put off starting a deeper relationship with their creator until they’ve got it all together. I do that sometimes, too. I plan to have a time set aside to spend with the Lord. But, I’ve got to get all these other things out of the way first! Or worse yet, people try to become perfect enough to approach God on their own.

The Bible says we can’t do it by ourselves. That we’ll never measure up, never be perfect enough to approach God. In our American perfectionism, this is rather a bummer. You mean, I can’t cover up my sin enough to approach God on my own? Mix in a little food coloring to make myself brighter and more appealing? Not so much. The good news is, Jesus says that if we accept Him as our savior, He’ll approach God for us. He’ll be our intercessor. God will forgive our imperfections and sins because the One who is perfect died in our place. We don’t have to wait until we have it all together, or cover up our sins or short comings, to deepen our relationship with God. We just have to accept the gift of grace Jesus offers to us.

Romans 5: 7-11 You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. Since we have now been justified by his blood, how much more shall we be saved from God’s wrath through him! For if, while we were God’s enemies, we were reconciled to him through the death of his Son, how much more, having been reconciled, shall we be saved through his life! Not only is this so, but we also boast in God through our Lord Jesus Christ, through whom we have now received reconciliation. (Read in context here.)

When I was in high school, my school sold roses on Valentine’s day to make money for programs. And every year I hoped to get one from someone—but I never did. A couple times during the day, rose deliveries would be made in the classrooms, and I’d hold my breath, thinking maybe some unnamed admirer would confess their crush through a rose. Throughout the day, you could see clearly who was ‘loved’ by the rose placed prominently on their desk, carried proudly to each class. For me, though, it was not to be.

What I did not know at the time was that one day I’d marry a man who gave me flowers throughout the year. A man who would make personal sacrifices for me time and again. Who would do anything to protect and provide for me and our two kids. Who would stand by me in trial, pray for me during illness, and rejoice with me in blessings.

And as wonderful as I think my husband is (and you may think your significant other is), there’s One who loves us better. He set the standard on love—one that we can’t possibly meet without Him.

But, maybe you’re not feeling so loved or lovely. You’re thinking, “What’s love got to do with it?” You might even be angry at where you are in life. If you are today like I was once, wishing and hoping to be loved and appreciated, feeling unnoticed—know that you are not only noticed, but fully known. And that sacrificial love has been given to you, a free gift for the taking.

1 John 4: 7-12  Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love. This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us. (read in context here)

As I sat, she chatted with me and the infusion started. Every fifteen minutes the nurse took my vital signs to make sure I wasn’t having a reaction to the infusion. I watched each time she jotted the numbers down. As I relaxed and realized everything was going okay, my blood pressure and pulse dropped. Before I knew it, 2 1/2 hours had gone by and I was done. The nurse gave me a grin as she wrote down the last vital check—all at very normal levels. “You’re not nervous anymore, right?”

She’s was right. Sometimes facing that unknown can be worse than the actual event. And I have a pretty good imagination (thus the writer in me). Unfortunately, I’m also a bit of a pessimist—so I tend to expect the worst and am usually pleased with a better outcome. I didn’t have a reaction (so we put away the Epi-pen until next time), and I didn’t get a headache or nausea. I did get some pretty awesome swelling though, that has finally gone down today (Friday). I understand that gets some better over time as my body will adjust to the treatment.

Something else happened today that I did not expect. For about a half-hour, I felt a bit different. By the time I caught on to what it was, the moment passed. It was what can only be described as feeling well. There was an open window of healthiness, the sun streaming in, a lightness for a period of time in which I didn’t feel the groggy, achy flu-like fatigue I’ve had for so long. I don’t know how else to describe it. Then, before I realized it for what it was, that window crashed closed, and I fell to tears.

People who are chronically ill set a new level on themselves (at least this is my experience and the experience of my friends). This is what feels okay, this is what doesn’t (what passes for okay for someone chronically ill would feel quite sick by a healthy person’s body). I’ve spent so much of this past year feeling lousy, I think I’ve forgotten what it feels like not to feel icky. In fact, as happens often with CVID, I’ve felt worse and worse, less and less able to keep up with life for the past ten years. Tired from doing easy tasks, overwhelmed by decisions, catching every cold that comes by. Some friends chalked it up to age—but it’s not just that. Today, I had a window of proof.

I’m going to try, while I fight a sinus headache off tonight, to hold onto that vision, that view of wellness. Because of that window I glimpsed through today, praise God, I’m hoping for more—when frankly I was afraid to hope at all.

Ephesians 3: 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. (read in context here)

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)

As it’s Christmas, the time of year when Christians choose to celebrate the birth of their savior, I thought I’d share a bit of what I found for my searching friend. I think the misconceptions of the world often infiltrate our ideas of who Jesus was. I often hear through the media that He was just a good man, or that He never claimed to be God, or that He was a just a prophet. Rather than listening to what others say, I think the best source of information is the fountainhead—the Bible. I’ve linked all the verses to read in context if you’d like.

The Bible says this about the birth of our Savior some 700 years before He was born:

Isaiah 7:9 Therefore the Lord himself will give youa sign: The virgin will conceive and give birth to a son, andwill call him Immanuel (which means God with us). (Full text here)

Isaiah 9: 6-7 For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the greatness of his government and peace there will be no end. He will reign on David’s throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and forever. The zeal of the LORD Almighty will accomplish this. (Full text here)

Equally powerful are the statements Jesus makes about Himself:

I AM the bread of life (John 6:35)

I AM the door (John 10:9)

I AM the light of the world (John 8:12)

I AM the good shepherd (John 10:11)

I AM the resurrection and the life (John 11:25)

Before Abraham was born, I AM (John 8:58)

I AM the Alpha and the Omega, the First and the Last, the Beginning and the End (Revelation 22)

Romans 5:6-7 You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. (Full text here)

I know things are ramping up. There are family pressures, parties to attend, the perfect gifts to find, and a whole world of madness outside of our homes (and sometimes inside). But, I hope you join with me in celebrating our Lord’s birth this season, thanking Him for all the things Jesus is to us, and what He’s done for us. Mostly, I hope you slow down and spend time with the One, who gave Himself up for us as a willing sacrifice, a gift of love.

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.)

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.)