Sometimes I feel like I am standing in a river. I can feel the water splashing around my feet, and the cold stones I’m standing on. I want to join everyone else on the shore, but my feet won’t move. I am stuck, and powerless to do anything about it. I think sometimes that is what having a chronic illness or a disability is all about. You spend a lot of time stuck.

When you struggle with a chronic illness you know how difficult it can be. You know the pain that you experience even when others don’t. You know how hard it can be to explain to others when it doesn’t match up with the pretty pain scale adorning the wall in the doctors office. You know how it feels to be robbed of quality of life and the ability to do small tasks that others take for granted.

Let’s just stop there for a minute and really appreciate that. We can’t always do what other people can do. What other people take for granted. For me, it is putting on my own socks. It seems like such a simple little task. Most people learn and master this by the age of three, and never think about it again – even though they do it every day. I was the same way. Until suddenly, I couldn’t do it anymore.

Maybe for you it isn’t socks. Maybe for you it is walking up the stairs, or sitting for an extended period of time. Maybe for you it is adding in something others don’t have to think about – like constantly watching your diet to make sure you don’t eat too much sugars, or have enough fibre, or aren’t eating too many raw foods. Whatever it may be, it sometimes makes you stuck.

We get stuck when we see other people enjoying their lives, without the added stresses we may experience because of a chronic illness or disability. And it can be so hard not to compare our lives to what we assume their lives are like. Sometimes we spend so much time comparing when we are stuck that we miss the most important thing of all…

What makes us stuck can also be a blessing. Because in the midst of  our difficulties, we understand a deep need for the presence of Christ. 

For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you. (Isaiah 41:13 ESV)

I love this verse. It takes me back to the river. Where the water is splashing around my legs and my feet are stuck. I can’t move, and I am trying not to panic, but let’s be honest. I am freaking out. And then this verse pops into my mind. And I can see Him. I can feel His hand in mine. And I can hear his voice, telling me not to be afraid because He will help me.

Knowing that He is there to help us through our lives is so powerful. I think people who struggle with chronic illnesses and disability can appreciate and understand this a little bit more than those who are healthy and don’t worry about seemingly small day to day tasks like getting out of bed, getting dressed, bathing and eating. Because we desperately need His strength to take over in our weakness.

In 2 Corinthians, Paul talks about a thorn in his flesh. Many people wonder what this might have been, but it doesn’t really matter, does it? What matters is what he learned by having this thorn. He needed to depend on God.

Three times I pleaded for the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:8-10)

Does this fuel the hope that you have? It does for me. When we are stuck, our weaknesses take over. When we are in pain, or completely exhausted, we are weak. When we can’t even think about walking up the stairs one more time, we are weak. When we need to follow a special diet, we are weak. When we can’t put on our own socks, we are weak. But take heart. Because He is strong.

If I never felt like I was stuck in the river, I wouldn’t need Him to hold my hand and help me out. If I never had been diagnosed with a chronic illness and disability, I don’t know that I would have come to understand my desperate need for the presence of Christ in my life. It is only because of this, I have learned to be thankful for this curse, because from it sprang up my greatest blessing.

Today is a pain day. Every once in awhile, they creep up. The pain is severe and uncontrollable and obviously, unwelcome. I have had people ask me why God doesn’t heal me. I’ve had people ask me if I have even asked for healing. I have had people ask me if I believe He can do it. Yes, I do believe He can. But right now, I do believe He won’t.

I don’t believe He doesn’t heal people – I know He does. I have seen it happen before with my own eyes. I just believe it is not the time for me to be healed. Sometimes, healing doesn’t happen. But I believe healing doesn’t happen because God has a different plan for you.

When it is just you and pain, you join with Christ for relief. Even if there is no healing. Sometimes, He allows the pain to exist in your life because He wants you to become closer to Him. In my own personal experience, when the pain is at its worst, that is when I see Him the most. That is when I feel His presence in my life. Through the pain. When life is good, and pain is less and things are going well, it is not as easy to experience His presence. But when you experience pain, He is right there.

Yes, I would love to not have to live with suffering. I would love to be able to skate through life without pain. I would love to be able to get down on the floor and play with my children and my niece. I would love to be able to go hiking with my family. There are many things I can no longer do, and I don’t understand why it has happened to me. But, that’s not really what matters here. Dr. Michael  Easley, of Moody Bible Institute who lives with searing pain on a daily basis said, “In the frailty of our limping lives, God is doing something I do not understand. And my quest is not to be successful but to be faithful.”

Yes, that is what I want to do. I want to be faithful. I might not understand why I have to endure this, but I want to be able to push through it to do what He has asked me to do. 1 Peter 4:19 says, “so if you are suffering in a manner that pleases God, keep on doing what is right, and trust your lives to the God who created you, for He will never fail you.”

You just have to trust and obey when you are suffering. Do what He requires of you. I don’t need to know all the reasons why this has happened in my life. I just know it has. At the end of my life, when I see Jesus, all will be made clear. For now, I just need to believe in His plan and obey it.

So where do I go from here?

I believe the answer is hope. Hope is more than a feeling. It is a powerful entity that embodies a feeling of trust. I hope – I trust – in a time where my body will be perfect. I hope and believe I will be pain free, with perfect legs. When healing doesn’t happen here on earth, it does happen in death. I don’t mind waiting until death – because for me, death is a new life.

And while I am waiting? Deuteronomy 31:6 says, do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you, He will neither fail you nor abandon you.” No matter what happens in life, when the pain or the deformation gets worse. No matter what happens. Even when the healing doesn’t come, but the wheelchair does. The moment the inevitable happens and my legs no longer work, He will be there. Because He goes before me into each new day. He goes before me into each new experience, whether it be filled with joy or filled with pain.

Yes, today is a pain day. But today, I am rejoicing. I can feel Him here. I can feel Him when  legs hurt so much I can’t even get out of bed. I can feel Him when my heart is breaking because my children are suffering. I can feel Him when there is pain. And I know He has a plan for me. I might not understand, but I will be faithful.

O Lord, how long will You forget me? Forever?

How long will You look the other way?

How long must I struggle with anguish in my soul,

with sorrow in my heart every day?

How long will the enemy have the upper hand?

Turn and answer me, O Lord my God!

Restore the sparkle to my eyes, or I will die.

Don’t let my enemies gloat, saying, “We have defeated him!”

Don’t let them rejoice at my downfall.

But I will trust in Your unfailing love.

I will rejoice because You have rescued me.

I will sing to the Lord

because He is good to me.

Psalm 13

How long, O Lord? This is  a question my heart has asked over and over in many different situations. When my heart is breaking, when I feel defeated, when I just want answers. Even when I know that God is with me, and I know He is present in every moment, my heart sometimes feels forgotten.

When I feel forgotten, fears creep in. All of those what ifs come tumbling towards me. This morning as I write, I have a sweet boy sitting across from me. Sometimes it is impossible to find the positive in the negative, like a third suspension this year. Middle school is not kind to autistic children. I fear for the future. Like when people ask me the question “what does his life look like fifteen years from now?” I don’t like thinking about the future and all of its uncertainties. It breaks my heart because I don’t know.

What if he doesn’t get a job? What if he can’t support himself? What if he doesn’t get married and experience the joy of having a spouse and companion to do life with? These are the questions I don’t like to think about. And when I do, I find my heart crying out, how long, O Lord? How long will his days be difficult for him? How long will he struggle with control? How long will he be hurting? How long will he be lonely?

I don’t have answers to these questions, but I do have this beautiful psalm. It brings me hope. Here, we can see that David begins by crying out to God. He is even complaining about his situation, feeling that God has abandoned him in his time of need. David then prays for help, and asks for God to return the sparkle to his eyes. When I read this psalm, I feel this line – David was deflated. Have you ever felt this way? Maybe you don’t struggle with depression, but you have felt overwhelming sadness. In this psalm, David asks God to help him find his hope again. Then, spurred by these he remembers he does have hope in God. He remembers all of those times God has rescued him and helped him in his time of need. Then he ends this psalm praising God for his goodness.

When we are facing a situation that makes us cry out How Long, O Lord? we might be forgetting that God is good. We might be like David, who needs to be reminded that He is for us, that He loves us and that He has a plan.

Sometimes it helps to filter through your past and see how God has been present and working in your life. Maybe you keep a prayer journal. Maybe something pops up in your memories feed on Facebook. Or maybe you just remember on your own.

This morning as I sit here, writing with my sweet son across from me I realize how far he has come. As discouraging as it is for me to see him have another suspension on his record, I can thank God for all He has done in his life. I can be thankful that He is a child of God. I can praise God for the obstacles we have overcome, and be certain of the hope that He will be with us as we overcome more obstacles together.

I pray that when you are crying out to God in those  How Long, O Lord? moments, you will remember that God is good. And like David, we will end our cries to God with praise. Because when we are hurting, when we are feeling deflated, that’s when our praise needs to be the loudest. That is when we need to cry out to God with all of our hearts.

God has not forgotten you. Even though you may feel he has. Even when you are feeling sad, deflated and overwhelmed. He is still God and He is still good.

Christmas vacation is officially over. I have conflicting feelings over this. I am a bit relieved because it is exhausting, and the long breaks during the day will be nice. I don’t think people understand how much special needs parents desperately need some room to breathe. I am also sad to see them go, because I truly find joy in spending time with them. And, for another reason too.

On Tuesday afternoon when the boys arrived home from their first day back, they were happy. They shared bits and pieces of their day. Micah chatted about nothing and everything. (To his teachers, I love you. I forget how much that boy talks and this break has reminded me. Thank you for listening to him and making him feel important.)

When they arrived home from school and had had their snack, they started on their chores and homework. When they were done, they got their much anticipated screen time. While they were running minions and giggling with that ridiculous talking cat, I made a cup of tea and sat down. That’s when it happened.

The first of the daily e-mails arrived. If you don’t know what kind of e-mail I am talking about, I am jealous of you and your inbox. It couldn’t have been more ominous if it tried. Nestled in between a note from my Mom and an update on my order from David’s tea was an e-mail from a teacher. My fingers hovered over the tempting mini trash can off to the side, but there is this little thing called responsibility. So I opened it.

These e-mails are a bit like Russian roulette. You know what is coming, so you brace for impact. But at the same time, there is a small chance and with it a glimmer of hope that you won’t take a hit. Maybe it would be more accurate if the gun was loaded with all but one bullet, because that is how often you get good news.

I sometimes wonder why they can’t seem to write some positive with the negative. Because I know my children and I know the terrible things they are capable of. But I also know their hearts and they aren’t evil. They are sweet, and loving and kind. It is a bit of a messy package. I think it would be easier on autism parents to be able to handle the stress and grief over what their children were up to at school if they could cling to a little bit of praise as well.

My heart sank as I read not one, but two e-mails. Two e-mails for my two very different children. Two e-mails from frustrated teachers who had to come back from a relaxing break and had to deal with my son all day.

But here’s the thing. These are my babies. I have been dealing with my sons for over a decade. Far longer than any teacher. Yes, their days during the week are longer than my days with them. They have more waking hours with my children than I do during the week. But you know what? Teachers, I am giving you my children at their best.

What the teachers don’t see is my children when they wake up in the morning. Screeching because they can’t shut out the noise and desperately need to drown it out. Dumping things all over the floor because they are overly impulsive. Walking around naked because they’re so distracted they can’t even remember they were in the process of getting dressed. In the one hour before I send them out the door, I manage to get them fed, guide them as they get dressed, pack their lunches, and instill some peace in them so they are ready for their day. What the teachers don’t know is that sometimes my children are late to school because I won’t let them leave until they are ready.

I have medicated children. As a parent, that is sometimes a tough pill to swallow. When you first hold your baby in your arms, you fall in love with the sweet. In that magical moment, you don’t really think about the future. When I first held my babies, I didn’t know the magical moment would be when their medication kicked in. Like a light switch from chaos to contentment. When their switch finally reaches contentment after an hour of chaos, I send them out the door and pray they will have a good day. I never dreamed I would have a pharmacy in my home. I never dreamed I would have to give my children meds every day, probably for the rest of their lives. But it’s okay, because it helps them be their best.

Only, I guess their best isn’t good enough. Because the e-mails keep coming. And not just e-mails from the teachers, although those cause me the most stress. Also the e-mails scheduling therapies, doctors appointments, and hopefully some respite. Sometimes I wish for just a moment I could be the parents who get e-mails scheduling play dates and birthday parties. But I am not one of those Moms.

I don’t resent it. I just wish that for one day, I could have it as easy as the teachers. Because when my kids come home, their medications have run out and it is back to chaos. I don’t get the level of contentment the schools do when I send my kids there every day. I wish I could have that. But it’s okay that I don’t. Because I am the mother. The one who will love them, no matter what the e-mails say. The one who will wrap my arms around them when they have had a bad day and just need some love. The one who will stand beside them and advocate for them every step of the way.

Because I am an autism Mom, and it’s my super power. We stretch and give. We deposit here and deposit there and have very little deposits coming back. We get by on little sleep and a lot of caffeine. We show up for meetings. We schedule those appointments. And we answer those e-mails.

Don’t even ask me about the phone calls. That’s a story for another day.

Sometimes I have Mom envy. I know I’m a Mom already, and there are women out there who just want to have babies. I get that. And I hope and pray that you’ll be blessed with a little one soon. But I’m not talking about that kind of Mom envy. I’m talking about the kind of Mom envy where everyone’s house and lives look way better than your own.

I’m talking about when you’re perusing the web and you see a picture perfect family. The one where he’s tall dark and handsome. And she’s blonde, thin and has perfectly straight teeth. And they have some perfectly adorable children, biological and adopted. And they travel the globe, doing amazing and fun things together as a family, and just look like they are winning at life. I want to be happy for them, and sometimes I am. But more often than not, seeing their photos and reading about their exciting experiences leaves me feeling empty and alone.

I know I am blessed with the tall (not so dark) and handsome hubby. At least, I think he is. But aside from that, nothing is the same. I’m far from thin, I definitely don’t have blonde hair or perfect teeth. Neither do my kids – not their teeth or their behaviour. (I’ll bet those perfect people don’t get multiple phone calls from the school when their kids have been up to no good). And those adopted children? I’d love to have them, but my plate is sort of overflowing.

Sometimes it gets me down. Sometimes I can’t see past their perfect smiles. And then, other times I can. Because not everyone can be as transparent as our family is. We joke about not having secrets, but really it’s very true. Even if we wanted to have secrets, the kids would spill to the next person they see. (Like when my son told the person sitting next to him at the Christmas concert that I almost burnt the house down because I was trying to make popcorn in the microwave.) Not everyone can share the hard stuff. Not everyone can write about the stuff that leaves them weeping. Not everyone is me. Not everyone has that story to tell.

And that’s the thing. Their story is not my story. My story is not your story. We all have our own lives, our own families, our own experiences. We all have our own moments where we shine. We all have our own failures (some are just better at keeping them in the dark as others.)  We are all equal in that way.

But that’s where it stops. Because we can’t all be alike. No two snowflakes are the same. We all have our own individual fingerprints, our own individual DNA. We are all unique. We can’t have the same looks, the same children, the same trips around the globe. But we can stand united. Because even though we can’t have the same experiences, we still need each other.

Like that time I saw another autism Mom struggling to get her child together in the middle of Walmart. And there were groceries everywhere. It’s not the same experience I have every day, but it’s similar. So I know I couldn’t do anything to help her in that moment. But I could take her purse from the middle of the aisle and put it back in her cart. And give her one of those looks. The kind not everyone gives you when your child is melting in the store. A look not of disgust or distain but if solidarity and encouragment.

Like the time I saw another larger Mom trying on clothing at the store. Standing in front of mirrors that don’t show mercy, I watched as she stepped back feeling deflated. I’ve been there before. To be honest, I am there every day. Just trying to feel beautiful in a world that tells you you’re anything but. So I stood beside this woman for just a moment and told her what I would have wanted to hear. And watched as her shoulders rose back to where they should be. And as she turned away with a word of thanks, she went and bought the shirt. And I felt like maybe, just for a moment, I was winning at life. That maybe, for a minute, there was a reason why I face what I face.

It’s the first day if 2017. People usually make resolutions. Or they choose one little word they’re hoping will make their year the best it can be. This year, I just want to live intentionally. I want to tell my story. To feel, even if very briefly, like my story is worth having and worth sharing if not just for a single moment.

We may not have picture perfect lives. We may not have the children, or the trips, or the perfectly manicured lawns and gorgeous homes. But we all have a life worth living and sharing about. My prayer for this year is that we all experience life together. Not just the good bits, but the bad too. Because sometimes, when we are real, we remember we are just where we are meant to be.

I’m going to keep sharing my story. Because it isn’t glamorous. It isn’t beautiful. But it’s real. And it’s mine to tell, no matter what this year brings.

A few days ago we attended a little welcoming party for a newborn baby . I even had a chance to hold that sweet little boy and it was so wonderful to hear his little baby noises and watch him yawn the biggest baby yawn I have ever seen. What a sweetheart! His Dad mentioned something about having a lot of children (this baby was their fifth), and quoted Psalm 127:5 – blessed is the man whose quiver is full. They definitely have a full quiver, and it is awesome!

Later that evening, another friend posted a photo of some wall decor in their home. It featured the ultrasound photos of all five of their babies in a funky frame alongside this framed Psalm. “For you formed my inward parts: you knitted me together in my Mother’s womb. I praise you for I am fearfully and wonderfully made. Wonderful are your works. My soul knows it very well.” (Psalm 139:13-14) I thought it was awesome and very creative. What a neat idea. But then, my heart felt a little sad, just for a moment.

I always wanted to have a quiver of children. I wanted to have at least four. Maybe six. I came from a large family and I wanted a large family. I am not so sure my husband and I had the same idea for our quiver, but that’s another story for another day. Today’s story is about God Glasses.

What are God Glasses? Maybe it’s not the greatest term, but it is a simple way to explain what happens when you look back over your past experiences and see the hand of God in your life. To see his plan unfolding in your life – the BEST plan. The plan that might not be what you would have chosen for yourself, but that really is better than what you were thinking.

My God Glasses for a “lack” of a large family show me two things. Two very amazing, very important things. The first is, I HAVE CHILDREN. The second – two is more than enough.

My husband and I had these amazing grandiose plans (as most newlyweds do) to enjoy being married without children and start building a family after five years. So imagine our shock and yes, a bit of alarm, when we discovered we were expecting after we had been married for only three short months. A year and one month after our wedding day, our bundle of baby arrived. And what a joy he was! Two years later, another bundle of boy added to our forever family. I didn’t want it to be the end, but was told by doctors that I needed to be done and they were taking medical action to make it so. For the safety of my health, and my future children’s health. It was a bit of a blow to be cut off, but then, God Glasses. Ten years later, I put my God Glasses on. I realized that if I had waited those five years, I wouldn’t have been able to have any children at all. My God Glasses showed me His plan was better than my plan. My God Glasses showed me His blessings rather than my burdens of being without children.

Seven years after our forever family was formed, I had another God Glasses moment. We had been struggling with having a child with autism – and all that entailed. All the meetings with the school, the intervention, the special foods, the different medications. It was a challenge! Then we received the news that they both had autism, and some other added complications, and we were overwhelmed. Challenges and blessings can sometimes be bundled into one, can’t they? My God Glasses made me realize that two children with autism was more than enough. I didn’t need to add to my quiver. My tiny quiver was overflowing. My God Glasses showed me His plan was better than my plan. My God Glasses showed me the two children were more than enough, and any more would likely be too much to bear.

God Glasses are necessary as we navigate through this life. It is so important to look back on hard situations and disappointments that once shook us to our core – and see how God has moved. God Glasses allow us to see His plan with a fresh perspective. From His perspective.

What do your God Glasses allow you to see? I hope you will be as blessed as I am when you look back and see how God has turned your trials into triumphs.

It has been a few days since I embarked on the first day of my new journey – after the diagnosis. I honestly thought that it would be the best thing in the world, just what I needed. And it was, in a way. But then I sit here, folding laundry. Large laundry – the kind that people wear on their “fat days.” Worse, actually. The kind of laundry that no one wants to wear. That’s the kind of laundry I was folding. A part of me died a little bit. Because while I got a diagnosis, and it was the one that I expected, the skinny person inside of me died.

Every time I look in the mirror I am surprised. I am surprised at the person looking back at me because it’s not the person I feel is walking around out there. If there was such a thing as reversed anorexia, that is how I would categorize myself. Instead of thinking of myself as bigger than I am, I think of myself as smaller. So when I am met with that harsh reality, it knocks the life out of me. I see how I really look to others and it makes me sad. Now I am not completely out to lunch, I know I am not model thin – but I definitely don’t feel as large as I actually am.

So when I was folding my laundry – these clothes I have worn many times before – it was as if my eyes were opened to how big they really are.  And the hope that some day I would appear as skinny on the outside as I do on the inside disappeared forever. Because one thing is true, there is no way to reverse what has happened to my body. I will forever be a super sized person.

But then a fresh breath of hope in the form of a phone call. My sister, who is always in tune with my heart, called me on her lunch break to tell me she was going to buy me some pants for my birthday. As she added the pants to her online cart, she told me she was getting a size larger for me to grow into. Partly because that’s what was available, and partly because she can see the Jerusha I saw in the mirror today and the Jerusha I see when I look at myself. And she knows the dream that died. And she told me. “embrace it Jeru – it’s going to be okay.” I know that’s true. I do. And I love my sister, who knows that the Jerusha I see when I look at myself desperately wants to look pretty. And I love that she always helps me find clothes that will help me to look the way I want to look despite the Jerusha that really is standing in front of the mirror.

As I hung up the phone, her words ringing in my ears, I turned back to my laundry. I took a pair of holey pants to the garbage – I have new ones on the way. And as I was throwing them out, I felt a voice whispering “I make all things new.” A voice who knows the Jerusha that I don’t even know yet. A voice who knows all of my days – the days that have passed, the days I live right now, and the ones that I will live. A voice that makes it all okay.

Because I am more than the clothes that I wear. I am more than the size of my body. I am more because He is making me more. Jesus has an upside down kingdom. What the world thinks is right isn’t really right. What the world thinks is beautiful isn’t really beautiful. And in that moment, when I heard that voice whispering – I had a little perspective. Perhaps I am going to always be a large person while I live here on this earth, but that doesn’t mean my heart has to be broken in pieces over it. Because God is making me new, and it is going to be okay. If I am going to be large, I might as well live larger than life.

And while I live larger than life, I am going to embrace this – because that’s all I can do. I can embrace the lipedema riddled body. I am going to treat as best as I can the more serious lymphedema, and I am going to LIVE. For as many days as I have been given. Because right now, in this moment, it is not the end. He has made a way for me, even as I am. And even in the moments where I am faced with the reality I don’t want to face, He is the God of all my days. And I am trusting in His plan.