Lessons Learned

God has taught me a lot over the years with a chronic illness. One of the things that I have learned is to be content with my health and physical limitations. It would be great to be able to walk a lot, climb, and run again, but there is much more to life than physical strength and energy. Besides, I really don’t have it so bad. There are people in the world who are more disabled than I am, but don’t have anyone to take care of them. I have been blessed with a wonderful husband, son, and family to help me. I have a wheelchair and a comfortable bed at night. Many people don’t have that.

I have learned that I need to embrace this life that God has given me, not simply be content with it. Because of what we have been through, God can use Will and me in ways that He couldn’t if my health were good.

I have learned that God has a plan and a purpose even in suffering. He can use my health problems for my good and for His glory. God is at work and He has a plan that is far better than anything we can imagine! There are things that God has taught me that I wouldn’t have learned were it not for what I’ve been through because of my health. Sometimes we have to take the painful road to learn, but if it brings us closer to God then it is worth every step of the way.

I have learned more about God’s sovereignty. Yes, God is sovereign and He could heal me if He chose to do so. However, since God is sovereign, He is under no obligation to heal me. He is God! He can do whatever pleases Him and brings Him glory. We often put God in a little box and think of Him as simply someone from Whom to ask favors. However, we need to keep in mind that God is so much bigger than we can understand. He is completely holy, all powerful, all knowing, and all wise. God is in control. He is not bound by time. He is above all. He is worthy of all praise, honor, and glory. God is also loving, patient, gracious and He longs to hear from His children. He wants us to pray to Him, but when we do, let’s not forget Who we are talking to! We are talking to the Maker and Sustainer of the Universe!

I have learned that I can trust God no matter what. There are a lot of unknowns that come along with living with dysautonomia. So far treatment hasn't produced any dramatic improvement in my health. Barring a miracle I will probably be disabled for the rest of my life. But that is okay. I want whatever God's will is for me. I want God to be glorified in my life whether I am sick or healthy. If living a life with a disability will bring the most glory to God, then so be it. After considering all He has done for me, suffering a little bit for a few years on earth is a small sacrifice to make. God made the ultimate sacrifice for me when He sent His Son to die on the cross. Jesus died a horrible death. The situation was not good, but God used it for great good - the salvation of all who believe!!! Jesus knows what suffering is. God knows what sacrifice is. I can certainly trust Him to know what He is doing in my life. It is worth following God and obeying Him at any cost.

Wheels for the World

This was my first wheelchair. I purchased it while living in Alaska. It was a good chair, and it took me to many places. With this chair I was able to go shopping with Will. I was able to go to church. It took me to people's houses for visits. It took me around the Alaska Sea Life Center in Seward, and it took me around the Georgia Aquarium. It took me to and from the hospital when my son was born. It came with us on our 5,000 mile move from Alaska to Georgia. On the long trip it took me in and out of hotels, in and out of roadhouses, through vineyards and orchards in British Columbia, on a ride through Badlands National Park, and out to see Mount Rushmore. It has taken me to the swimming pool, and it took me to Cow Appreciation Day a couple of years ago (costume included!). I have a lot of memories of good times had because I had a wheelchair to take me and someone to push me.

Now I have a newer wheelchair that better suits my current needs. My old one was rarely used anymore. I did still use it occasionally, but I couldn't say that I truly NEEDED a second wheelchair.

I know that there is someone out there who needs my old wheelchair more than I do. I remember reading about Wheels for the World, a ministry by Joni and Friends, and I wanted to give my old wheelchair to them. They take old wheelchairs, fix them up, and bring them to individuals in foreign countries who don't have access to wheelchairs and other mobility aids. These items that we consider a necessity, they consider a luxury.

In the book, When God Weeps, one of the chapters shared about a wheelchair outreach trip to Africa. Here is an excerpt from the book that shares a little about that trip:

We westerners sat upright on benches, facing the ragtag crowd. "And now, Christian brothers and sisters," shouted the pastor, "let us give a warm welcome to our most gracious friends from America who have traveled very far to bring us wheelchairs and Bibles!" Cheers erupted; then, a welcome song. The full rich drone of African harmony twisted my heart, and tears fell freely as we listened to the disabled people applaud each other's testimonies and to the readings of Scripture. A half hour of constant praise passed easily, and then I was asked to speak.

"Thank you, friends, for welcoming us," I said as I wheeled into a clearing on the sidewalk. My JAF friend pushed a wheelchair-gift alongside of me. "God is good!" someone shouted as the first child was placed into it. Another chair, another disabled person. Hands began clapping in rhythm as a flow of crutches and wheelchairs were passed from our group to theirs. More syncopated clapping, loud and snappy. Ama bobbed her head in time, beaming a proud smile as she rubbed her stumps on the leather armrests of her chair. The teenage boys with polio started a dance in the clearing.

"Look," I said to a team member, "even the people who know there aren't enough wheelchairs to go around - they are so happy for those who get something." 

The rising moon was lightening the eastern edge of the night. As we readied to leave the slums, the Africans bid us farewell with one more song:

Because He lives, I can face tomorrow.

Because He lives, all fear is gone.

Because I know, I know He holds the future;

And life is worth the living just because He lives!

Is it the neon glare? I wondered, as I squinted at their smiles. No. It was joy out of this world.

My pastor friend lit the way back to the van. As we jostled across the street, my thoughts were jumbled. So much gladness in the midst of misery. Joy, like a fresh daisy, sprouting up from manure.

"What happens to Ama when it rains? Who takes care of her?" I asked.

The glow of the flashlight gave a sheen to his smile, "God takes care of her."

Oppressive heat. People penniless. A girl with no hands, no legs to walk, no bed, and not even a fan, living on concrete. It doesn't sound like God's doing a very good job. I recall hearing something; a boy who lived in a box by the trash heap said, "You westerners are the ones we can't understand. God has given you so much, you have been so blessed...why are so many people in your country so unhappy?"

From When God Weeps, chapter one.

Just last week a man from Wheels for the World came to pick up my wheelchair. It will be fixed up and brought to someone in a foreign country who is in need of one. I am excited to have the opportunity to share my wheelchair. It has taken me many places. It has traveled from Alaska to Georgia to Kentucky, and now it will travel to a foreign country to be given to someone else. I hope that someday in heaven I will be able to meet the person who receives my wheelchair and hear how they were blessed by it. How exciting that will be! I will ask him or her to run through a garden with me or do cartwheels down the streets of gold on the new earth. We won't need our wheelchairs anymore because we will be made new! Exciting indeed!

Weary and Broken, but Pressing On

Today has been a hard day. It has been one of those days when I am weary from the fight. I'm tired. I'm weak. My body doesn't want to move. Simply watching TV was too much work this afternoon. All I could do was lie still in bed. No moving, no talking. I could barely pray because my mind couldn't formulate thoughts. I felt trapped. Stuck in this body, stuck in bed. Unable to sleep. Unable to think. Weakness won out. For a few moments my lungs and diaphragm forgot what they were supposed to do and took a break. My brain had to kick in and remind them to work again.

My body is broken. Usually I can pace myself carefully and make it through the day, even on the bad days. Then there are days like today when I am reminded of just how weak I can be, and just how hard things can get. My body won't do what it was designed to do. It won't even pretend to do what it is supposed to do. There is no faking it today. No one who walks in to the house today could fail to see that I am actually ill. I can't smile to hide the weakness and fatigue I feel right now. This illness is real. My body is growing weaker. I feel like I'm falling apart.

On days like today I long for heaven. I long to be with Jesus. I long to have a resurrection body. I long to live on the new earth. I long for this race to be over. I long for the finish line.

I head over to my friend's blog. She faces the some of the same illnesses I do, plus other trials of her own. She knows what this is like. She's real. She's honest and refreshing. I'm always encouraged after reading her blog, and today is no exception. She encourages me to keep on keeping on.

Hebrews 10:35-36 encourages me to always persevere, especially in those moments that make me want to give up the most -"So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised."

On the Day of Judgment, we will be richly rewarded if we did not give up on our faith in Christ despite danger, persecution, and difficulty. We will shine like the stars in the heavens... with brightness that comes not from a new bulb, but from the glory of God himself.

Colors of Qavah: Just Out of Reach

This is the life God has chosen to give me. This is the path He wants me to walk. I will live this life. I will walk this path. I may have a good cry every now and again, but I will press on. I will embrace this life and the opportunities I have. Some days it's just hard.

Be Still My Soul

Be Still, My Soul

Be still, my soul: the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul: thy best, thy heav'nly Friend,
Through thorny ways leads to a joyful end.

Be still, my soul: thy God doth undertake,
To guide the future as He has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know,
His voice who ruled them while He dwelt below.

Be still, my soul: the hour is hast'ning on,
When we shall be forever with the Lord.
When disappointment, grief, and fear are gone.
Sorrow forgot, love's purest joys restored.
Be still, my soul: when change and tears are past,
All safe and blessed we shall meet at last.

Words by Katharina von Schlegel, 1752

Image courtesy of Microsoft Office Online free clip art.

It's a Girl!

Emma's Baby Booties

I had an ultrasound this week, and we found out that we are having a baby girl. William has been saying for a couple of months now that he was going to have a sister. He was right!

We have named our little girl Adelaide. I first heard that name 12 years ago and thought it was absolutely beautiful. I knew that I wanted my first girl to be named Adelaide. Will likes the name, too, and so Adelaide it is.

After my ultrasound, Will took me out to pick out some yarn for baby booties. Today the baby bootie making will begin! I am starting with the booties pictured above. I love the old fashioned look.

A Bad Day

This is what a bad day looks like.

How do I make it through the day alone with my son?

Keep reading to find out.

Will gets up early and gets ready for the day. When William gets up around 9am, Will gets breakfast for him and for me. I am unable to sleep any longer, but also unable to get out of bed yet, and so Will brings breakfast in to me. He also brings me my morning Gatorade and coffee.

At 9:30 Will really needs to go to school, so he puts on a Thomas the Tank Engine video to occupy William and buy me some more time in bed. Around 10:15 I finally fall back to sleep. Just a few minutes later, William comes in and wakes me up. I am tired and exhausted, so I let him watch his Cars movie. That will give me another two hours to sleep.

William watches his Cars movie and plays quietly while I sleep. I am a very light sleeper, and I am in and out of sleep this morning, so I still have a vague idea of what is going on in the apartment. William knows that I need to sleep, and so he gladly stays quiet and well behaved for me. I am so blessed to have such an easy going child!

I wake up sometime after noon, but have to stay in bed because my body is so weak. William comes in to visit me occasionally. He talks quietly to me and checks to make sure I am okay. Then he goes back to playing.

At 1:30 William comes in to the bedroom bringing two bananas. One is for him, and one is for me. I didn’t even ask him to bring me anything. He just thought of me and brought me some food! It was very sweet of him, but I was too tired and weak to even bother with it. Two minutes later William walks back in to the bedroom and sees my banana still lying on the bed. “You need to eat your banana, Mommy. It will make you feel better.”

He is very adamant that I eat the banana, and so I comply. Again two minutes go by, and William comes back to check on me. He is glad to see that I ate my banana, and he takes the peel to throw away. He tells me, “Now you will feel better, and now the baby has some food, too.” He wasn’t just looking out for me; he was taking care of his little brother or sister, too! What a responsible three year old!

All afternoon William plays quietly in the apartment. He comes in to visit, snuggle, and talk with me occasionally. Other than bathroom breaks and one trip to the living room (15 steps away from the bed!) to put on Cars, I stay in bed until 4:00pm.

At 4 o’clock I am finally feeling hungry and well enough to venture to the kitchen. I go to get a snack, and then go back to bed. On a day like today, the recliner is too much. I need to be flat in bed.

Will comes home at 5:00, and what a relief it is to have him home for the evening! Help has arrived.

I continue to stay in bed until 6:15 when I decided to be brave and take a shower. I don’t sleep well at night if I don’t have clean hair (I’m weird that way), and I desperately want clean hair. Halfway through my shower, though, I am regretting the decision. I am weak, light-headed, and having difficulty breathing. I manage to make it through without fainting, and I head back to bed to recover.

I soon move my recovery time to the recliner in the living room so that I can watch Wheel of Fortune, my nightly show. :) I eat supper while in my recliner watching the show. Once Wheel of Fortune is over, I go back to bed. We have family devotions at 7:30 in our bedroom so that I can stay in bed.

William goes to bed after devotions, and I also stay in bed for the night. I am unable to go to sleep right away, so I watch a movie. I am too tired and brain fogged to read, but an easy movie is just perfect.

Come midnight I start to feel a little better. I am a little more awake and alert, and my energy level has improved some. At midnight, though, I need to be going to sleep. I take my sleeping pill and night time meds, and eventually drift off to sleep, hoping that tomorrow will be a better day.

This was definitely a hard day. A day in which I can think of little else than just making it through. At the end of the day, I am so thankful for the break that night time brings. I am thankful to be able to stay in bed and go to sleep. I am thankful for the dark and for the quiet. I look forward to a new day. Most of all, I look forward to heaven. These "bad days" now will just make me appreciate my resurrection body on the new earth all the more!

This is what my bedside looks like on a bad day. There are dishes, water, food, medicine, a fan, and anything else I might need within reach off the bed. It's a mess, but it is a helpful mess.

This is what our house looks like at the end of a bad day!

There are toys everywhere.

William's room at the end of a bad day.

It is a mess.

Even at the end of a "bad day" William is still smiling.
It is good to know that even though he has a disabled mom, my child is healthy, happy, and content.

William still enjoys being with me, even when I am stuck in bed.

He's a good litltle buddy for me, and a good little helper, too.

A Good Day

When I can read books with my son, it is a good day.

As promised, here are the details of what an average "good day" looks like for me.

7:00 am - Will gets up to get ready for school. I keep sleeping.

7:15 - William wakes up and comes into my room. He crawls in bed with me, snuggles, and falls back to sleep.

7:45 - I am mostly asleep, but aware that Will has just brought my Gatorade in for me. I keep sleeping.

8:30 - I am still very sleepy, but having trouble sleeping. I continue to wake and fall back asleep.

9:15 - I’m still sleepy, but completely unable to sleep anymore. I drink some of my Gatorade.

9:25 - William wakes up. He snuggles and talks to me.

9:30 - I take my morning meds and drink more of my Gatorade.

9:32 - William is finished with talking and snuggling. He is ready to play and goes out to the living room. Even though I stay in bed, William is only 15 feet away. It is easy for me to listen to him and know that he’s okay.

9:37 - I walk only three steps from the bed to the bathroom. Having a small apartment is such a huge help with conserving my energy, especially in the mornings when I am so tired and weak.

9:39 - I am back in bed to rest and finish my Gatorade.

9:43 - William comes in and asks for a pancake. Will has made some, and we have them in the freezer. I am still too weak to stand long enough to prepare a pancake for William. I ask him to get some yogurt for both of us, promising to get him a pancake later when I can get out of bed. He is disappointed, but complies.

9:46 - William has to go potty. He can do everything by himself except for getting his pants back on. I ask him to come stand up on the bed, and I help him get his jammie pants pack on.

9:56 - William comes to my bedside to bring me yogurt. He runs back to the kitchen for a spoon, and brings one back right away.

9:57 - William goes into the living room to eat his yogurt.

10:00 - I turn the bedroom tv on and watch Martha Stewart. Listening to the noise and conversation help my brain to wake up.

10:02 - “Mommy, I need you!” I hear William call from the living room. I go out to the living room; thankfully the middle of the living room is only 9 steps away from my bed in the bedroom! William says, “It is a weird one.” A weird cartoon had come on the Disney channel, so I switch to Dora the Explorer on Nickelodeon.

10:04 - I lie back down in bed.

10:11 - William comes in and says, “Mommy, the children are playing outside. Can you take me outside?” Sadly I tell him that I cannot. It is usually too hard for me to go outside in the morning, and summer temperatures often make going outside completely impossible for me. I ask William if there is something special we can do together inside. He says, “I just want to watch Dora,” and goes back to the living room to finish eating his yogurt and play while watching Dora.

10:31 - I am finally able to finish my yogurt.

10:32 - I get out of bed and put on my compression. My heart is pounding and I am worn out, so I lie back down in bed.

10:36 - My heart has stopped pounding, so I try to get up again. I get dressed, brush my hair, and wash my face.

10:42 - We are all out of coffee today, and so I am unable to get my morning dose. I make a cup of black tea instead. I also get the pancake I promised William.

10:47 - I sit on the floor with William and we eat second breakfast together.

11:00 - It look at the thermometer and find that it is only 75 degrees today! I get William and myself dressed, put on my cooling vest, and we head outside. While outside I recline in my chaise lounge, visit with the other moms, and work on my quilt mending project in my lap.

11:56 - The temperature has reached 80 degrees, and I can no longer stay in the heat. I have to go inside, but my neighbor kindly volunteers to watch William for me because they will be staying out a little bit longer. This is helpful because it gives me a chance to have some quiet in the apartment and check my email.

12:17pm - William comes inside, and I get a drink for him.

12:20 - I am tired and needing to rest. William asks to watch 3,2,1 Penguins. I gladly say yes because it gives me a chance to lie down in my recliner for a while. While reclining, I work on crocheting a baby blanket, resting my arms occasionally.

12:49 - Will comes home from school and brings a fresh bag of coffee beans. Yay! We have coffee again! Will makes lunch for us and we visit together for a while. For lunch, as for many meals, I eat while in my recliner. It is much easier than trying to sit up at the table. Will and William join me in the living room for meals.

1:40 - William plays with his daddy for a few minutes before Will has to go back to school. I rest in my recliner and enjoy a fresh cup of coffee and a magazine.

2:15 - Will goes back to school. William asks me to play cars, but before we can get started, my neighbor comes by with a loaf of bread and several bagels from free Panera bread day up at the school. William wants a bagel, so he sits on the floor and eats half a bagel while I lie down next to him, finish my coffee, and share a few bites of his bagel.

2:40 - William and I sit together in my recliner and read books.

3:11 - We finish reading and get ready for naptime.

3:31 - William is going to sleep now. I catch up on some of my blog reading.

3:50 - I go to bed to read my Bible and rest.

4:50 - Will calls, and I talk to him for a few minutes. I give him the grocery list over the phone so that he can pick up what we need before coming home.

4:55 - I realize how tired and sleepy I am, yet how much is still on the to do list for today. I feel like I haven’t accomplished anything today, and I have to remind myself of how much I have been able to do. I have loved and cared for my son all day. He is happy, healthy, and content. I got breakfast for him (well, half of it!). I took him outside for an hour. We read books together. I spent time with my husband over lunch. I read my Bible. I did a little bit of work on my crocheting project and my quilt mending project. I have worked hard and used the energy God gave me. The to-do list may still be long, but I have made progress. Slowly and steadily I will continue to get stuff done. Meanwhile, rest is important. I need to be well rested for when William gets up from his nap.

5:12 - I am still very tired, but I realize that I need to get up and wake up William. If he doesn’t get up soon then he will never go to sleep by 9:00, and I know that I will need to go to bed by 9:00 whether he does or not. William and I snuggle and talk. He asks for a snack to watch his video about animals.

5:20 - I put William’s video on and bring him the rest of his yogurt from breakfast. I lie down in my recliner unsure of what to do next. I need to pay some bills, but because most of my energy and brain power has been used up today, I decide that paying bills is going to have to wait for now.

5:30 - William comes up to snuggle me in my recliner. We watch his video together.

5:55 - Will comes home, and William begs him to play. Will needs to cook supper, though, and I need to rest. William plays by himself for a while and I continue to rest in my recliner.

6:30 - I am getting a little more energy now. I use Will’s laptop while in my recliner and get some things accomplished while Will cooks and William plays and talks to me.

7:23 - We eat supper together.

7:59 - I take a shower. Because we have a handicap accessible shower now, I am able to do this by myself on most days. In the past I always needed help from Will to prevent falls. Showering is still hard for me, but with the many aids I have in the bathroom, I am able to complete the task.

8:30 - I lie down in bed to recover from my shower. While I am in bed we do family devotions.

8:58 - Will puts William to bed. I stay in bed for the night. First I do a little bit of work. I pay the bills and open some mail.

9:25 - Will brings me some tea. What a sweetie he is. I keep working on paying bills.

9:40 - I am finished paying bills. It feels so good to have something to cross off the to-do list in my head! I rest for the remainder of the evening while Will does homework. I read on the internet using Will’s laptop, catch up on email, and read some in my book.

11:00 - Will and I spend some time together before lights out.

11:42 - I am finally feeling sleepy enough to take my meds and go to sleep. I take my sleeping pill and night time meds, brush my teeth, and crawl back into bed. Even with a sleeping pill it takes me a long time to fall asleep. Finally sometime between 12:30 and 1:00 I fall asleep.

This was a good day. It was a hard day, too; it always is. Life is hard. But I have been blessed in so many ways. God has blessed me with just what I need to make it through each day, whether a “good” day or a “bad” day. I have a small and well laid out apartment, making it easy for me to get around. I have great neighbors who are willing to help me when I need it. I have an easy going little boy who is usually flexible according to what I need. I have a helpful and caring husband, who is faithful and devoted to me no matter what trials have come. I am blessed indeed!

An Honest Update

This has been a tough week. Monday was a pretty good day, but I've had a really rough time since then. Usually I don't tell people much about the "bad days," but Will said that people need to see the bad side, too. I'm not always sitting in my wheelchair smiling. Some days I am physically too weak and tired and brain fogged to have facial expressions. I am sometimes too weak and tired to get out of bed and sit up. The act of simply waking up is a challenge, and I fight my body to wake up and eat and drink.

This is how I have spent most of this week.

People often say to me, "I don't know how you do it." They don't understand how I can keep up with a now three year old while spending my life sitting and lying down. People want to know what my daily life is like, how I keep up, and how my son is so healthy and happy despite having such a disabled mother to care for him all day.

I had a couple of blog posts that I wanted to write this week that would describe in better detail what good day is like, what a bad day is like, and how I manage parenting from bed. If you really want to know about the good and the bad, come back next week. As long as I'm physically able to type it all up, I'll share what an average good day is like, and what an average bad day is like.