Though Hannah is now five years old, I still put a bib on her for especially messy meals, like soups and anything involving tomato sauce. She doesn't seem to be able to keep her mind on menial tasks like keeping her head over her plate and not waving her fork wildly in the air while she talks. Last night at dinner she finally seemed to grasp the demeaning significance of the bib around her neck. "I don't need a bib!" she declared, "I'm five!" And with that, she jerked the bib from her neck with one hand and threw it to the floor.
I was about to reprimand her for the rude manner of her protest when Toby looked sternly at me and spoke up. "I five!" He declared, then grasped his bib, yanked it off and flung it to the floor. I tried a moment to keep my face stern, but the mischievous twinkle in his eyes overpowered me, and we all laughed together.
A few nights ago I was dismayed to find a collection of Hannah's fairy band-aids stuck all over her bed's headboard. I scolded her and showed her how they damaged the finish slightly as I pulled them off. Tears welled up in her eyes. "But, Mommy," she pleaded, "I can't throw them away. They're too pretty!" Again, I found myself laughing when I had been disciplining. We settled on collecting the pretty fairy band-aids on a special paper, instead of the headboard.
There is such a fine line between raising kids with discipline and with fun, a swing too far in either direction can be disastrous. I am thankful that my kids continually force the fun out of me.
Tonight, once again, Naomi clunked down the stairs from her bed. Thud, clunk, thud, clunk, trying not to bend her joints as she came. "What's the matter, honey?" I asked.
"Mommy, my ankles really hurt again," she said, "especially my left one." I had her rate the pain and she watched as I recorded it in the journal we are keeping to show the rheumatologist when we can finally go see him in May (two months from now!). I gave her a hug and a kiss and a pep talk about how sleep will help. She started back, but stood a moment looking up at the long staircase between her and her bed. Then she started, slowly and awkwardly, favoring the left leg. Halfway up she reached her right leg up two stairs, gave a mighty tug on the railing and heaved herself up, then did the same with her left.
"What are you doing, Naomi?" I asked.
"I'm trying to get up the stairs without having to take so many steps!" she replied with determination in her voice.
For a moment I felt even more sad, but then I laughed. "Well, you look ridiculous!" I teased. And, just as I had hoped, Naomi laughed too. I winked at her, and she knew my joke was in love. Sometimes the best thing you can do for someone in pain, after you've given them sympathy, is to help them see the lighter side. Laughter truly heals. My kids have given me so much laughter, I want to try to give it back to them.
Tuesday, March 29, 2011
Monday, March 28, 2011
Hannah on the Usefulness of Boys
I was emphasizing the importance of eating "like a lady" at dinner tonight: showing the girls how to hold their fork, slow down, and take smaller bites.
"Toby," Hannah said, "you don't have to eat nice 'cause you're just a boy!"
"Yeah," Emma added, "you gu a boy!"
"Oh, don't say that," I countered, "boys are very important. Can you imagine what our lives would be like without boys? We'd have no daddies or grandpas, and that would be sad wouldn't it?"
"Well," Hannah conceded, "With no daddies or grandpas there wouldn't be any of us. I guess you have to have boys to have girls."
"Toby," Hannah said, "you don't have to eat nice 'cause you're just a boy!"
"Yeah," Emma added, "you gu a boy!"
"Oh, don't say that," I countered, "boys are very important. Can you imagine what our lives would be like without boys? We'd have no daddies or grandpas, and that would be sad wouldn't it?"
"Well," Hannah conceded, "With no daddies or grandpas there wouldn't be any of us. I guess you have to have boys to have girls."
Sunday, March 27, 2011
With the Gusto of Toby
I was wondering. What would my life be like if I approached every day with the gusto of Toby? What if I greeted every morning by jumping up and down on my bed and belting out, "Guh morn-in' time!?" What if I dashed down the stairs just to stand in awe at the power of the vacuum, or watched in wonder as each stray cat or sneaky spider crossed my view? What if I carried a broom with me everywhere I went? What if I just never gave up searching for screwdrivers, swiping thermometers, and climbing to the highest point in any given room? What if I refused to let anyone pin me down and just never took "No" for an answer?
What if I yelled joyfully, "Phone ringing!" every time a phone rang or a timer beeped? What if I spent at least twenty minutes a day chasing Naomi, Hannah, and Emma around and around the circle of our house until we all collapsed on the
floor laughing? What if I saw cooking dinner as the most amazing time when I got to touch new textures, smell new aromas, taste new flavors, hear new sounds, and see new sights. What if I giggled with all my might each time an egg cracked, slipped from the shell, and plopped into the bowl? What if I pushed the big kids out of the way as I climbed the highest slide at the playground and came down laughing over and over and over?
floor laughing? What if I saw cooking dinner as the most amazing time when I got to touch new textures, smell new aromas, taste new flavors, hear new sounds, and see new sights. What if I giggled with all my might each time an egg cracked, slipped from the shell, and plopped into the bowl? What if I pushed the big kids out of the way as I climbed the highest slide at the playground and came down laughing over and over and over?What if I ended each night by praying in faith like Toby's nightly prayer, "Dear Lord, thank you for Grandpa Johnson coming soon?"
Well, what if?
Friday, March 25, 2011
Turning Adult
When my alarm went off at 6:20am Matt had just finished his after-work shower and was heading to bed. He wished me a good morning and a happy birthday and I wished him a good "night's" rest. It's definitely a new kind of normal to have our lives so seperated, especially on special days.
With nine years of marriage behind us, and four lovely children growing before us I suppose it is time that I leave behind the "young adulthood" of my twenties and enter "real adulthood" now. Matt's life and mine could not stop today to steal away for a weekend's getaway to Chicago complete with dinner at a fondue restaurant to mark the occasion, but it is nice to know that at least we both would still like that. After all the trials we've been through, I guess that's an accomplishment.
And what did I receive this birthday? Waking in a house inhabited by my family alone (the best gift my husband could have given me this birthday), four grinning children greeting me with loud "Happy Birthday"s, a three year old who was ecstatic to be going to school, three other kids who were ecstatic that I took the time to let them ride the penny horse ride at the grocery store, the security of seeing my husband get up and work again today and knowing we would have what we needed, a new CD, and two bouquets of flowers.
Matt's sister and her husband and their three kids came by for dinner and cake, and my mother-in-law dropped by as a surprise too. Matt even called on his break just as they were beginning to sing Happy Birthday to me, so he joined in on speaker phone. I was surrounded by many who love me as I turned 30, and who could want more than that?
With nine years of marriage behind us, and four lovely children growing before us I suppose it is time that I leave behind the "young adulthood" of my twenties and enter "real adulthood" now. Matt's life and mine could not stop today to steal away for a weekend's getaway to Chicago complete with dinner at a fondue restaurant to mark the occasion, but it is nice to know that at least we both would still like that. After all the trials we've been through, I guess that's an accomplishment.
"Guh morn-in'!" Toby chimed as I cracked the kids' door to rustle them from sleep. "Good morning!" I answered, "Toby, today is Mommy's birthday!" He grinned then asked, "Eat cake?" And when I affirmed that we would, indeed, be eating cake, he grinned again, "Tastes good!"
So I turned 30 while I hurried the kids out to the van and dropped Emma at speech preschool. I turned 30 while I lugged the other three kids through the aisles of Wal-Mart and Meijer, stocking our pantry for another week. I turned 30 while I cooked lunch...again, and cleaned up dishes...again, and ran a homeschool...again. I turned 30 while I packed Matt's lunch and mixed his coffee and kissed him good-bye as he hurried out the door...again.
There were cards for me in the mailbox at noon, phone calls with birthday wishes, and all-day Facebook birthday greetings. And there was a little impromptu party. We mixed a cake together and the girls thought I should decorate it with a Mommy who had four kids. We shared some giggles as it took shape before us, and Toby reminded us with all the elegance of a caveman, "Eat cake! Tastes good!"
Matt's sister and her husband and their three kids came by for dinner and cake, and my mother-in-law dropped by as a surprise too. Matt even called on his break just as they were beginning to sing Happy Birthday to me, so he joined in on speaker phone. I was surrounded by many who love me as I turned 30, and who could want more than that?Besides, Hannah's face was adorable as she wrinkled up her nose at the Sprite in her cup. "This stuff's full of frizzle!" she complained.
And yes, I laughed as I opened the girls' pile of homemade presents. Naomi had thoughtfully cut squares of computer paper and taped them together into a useful notepad. She had also created an elaborate card in the shape of a girl for me. 
Hannah had cut out the figure of a boy from blue construction paper and named him "Tom" (because it is a name she knows how to spell); designed a picture with H and M (for Hannah and Mommy) surrounded by hearts; taped strips of paper together to form a necklace and bracelet for me; created a construction paper birthday cake; and drawn a picture of me walking up a hill in the sunshine. I haven't opened Emma's present yet and a few more from Hannah--we're saving some to open with Daddy tomorrow.
Hannah had cut out the figure of a boy from blue construction paper and named him "Tom" (because it is a name she knows how to spell); designed a picture with H and M (for Hannah and Mommy) surrounded by hearts; taped strips of paper together to form a necklace and bracelet for me; created a construction paper birthday cake; and drawn a picture of me walking up a hill in the sunshine. I haven't opened Emma's present yet and a few more from Hannah--we're saving some to open with Daddy tomorrow.
Thank you to all who visited, called, sent cards, and left Facebook greetings. You lifted my spirits and stepped me off on a thankful foot as I enter "real" adulthood.
Tuesday, March 22, 2011
Fire Drill
Today began uneventfully: folding laundry, tickling Toby, nothing out of the usual except finding that I had run out of my favorite bread mix and trying a different mix in the bread machine. I made lunch, I ran a homeschool, and I cleaned up the house in anticipation of some guests this evening.
But I was jolted from the routine bathroom cleaning when I suddenly whiffed something burning. An overdose of adrenaline immediately flooded my body. I've been afraid of a fire in this house since the day we moved in. "Fire escape" was as much a priority in the blueprints of this house as electrical wiring. All four kids were upstairs! I rushed around the circle of our first floor and didn't spy any fire or smoke so I flew up the stairs and called to the girls as I glanced in each room, "Girls! Come downstairs right now. Mommy smells something burning."
They obeyed immediately, and with them safely lined up by the back door I rushed to the basement. Not the dryer. Not the furnace. Not the wiring overhead. Where was that smell coming from? Whenever I found one level of the house clear I feared that fire was breaking out in the level I wasn't on. I rushed back up to find the kids still waiting, wide-eyed at the back door. The first floor was filled with the stench now. It smelled like a rubber spatula I had once left on a stove burner and melted. I took a closer look now at the kitchen and thought it must be coming from something there. Not the stove top, not the oven, not the refrigerator, not the microwave, not the coffee maker, but I went around unplugging things just to be sure.
I put coats and shoes on the kids and marched them around the house to see if we could see any smoke coming from outside. Back inside the smell was stronger than ever. At a loss, I called my dad (with the kids still lined up at the back door). He had me pull fuses, check the furnace fan belt, and look more closely at wiring. The smell was still growing. Finally we decided I should just leave the house and call the landlady. Just as I was agreeing to this I took one last trip around the kitchen, sniffing with my stench-filled nose. And suddenly I felt very silly.
Fortunately my parents laughed with me, and I hadn't called the landlady out for burnt bread. The kids quickly gathered around to gawk as I pulled the singed pan from the machine, and I used the opportunity to reinforce some lessons about fire safety. I praised the girls for obeying me quickly and being ready in case it had been a real fire.
"You know, Mommy," Naomi added, "there was one more good thing that came out of all this."
"Oh really, honey, what's that?" I asked.
"Well, Hannah and I were just fighting over who would do a puzzle when you came up," she explained, "and you made us forget to fight."
It does put things in perspective, doesn't it?
But I was jolted from the routine bathroom cleaning when I suddenly whiffed something burning. An overdose of adrenaline immediately flooded my body. I've been afraid of a fire in this house since the day we moved in. "Fire escape" was as much a priority in the blueprints of this house as electrical wiring. All four kids were upstairs! I rushed around the circle of our first floor and didn't spy any fire or smoke so I flew up the stairs and called to the girls as I glanced in each room, "Girls! Come downstairs right now. Mommy smells something burning."
They obeyed immediately, and with them safely lined up by the back door I rushed to the basement. Not the dryer. Not the furnace. Not the wiring overhead. Where was that smell coming from? Whenever I found one level of the house clear I feared that fire was breaking out in the level I wasn't on. I rushed back up to find the kids still waiting, wide-eyed at the back door. The first floor was filled with the stench now. It smelled like a rubber spatula I had once left on a stove burner and melted. I took a closer look now at the kitchen and thought it must be coming from something there. Not the stove top, not the oven, not the refrigerator, not the microwave, not the coffee maker, but I went around unplugging things just to be sure.
I put coats and shoes on the kids and marched them around the house to see if we could see any smoke coming from outside. Back inside the smell was stronger than ever. At a loss, I called my dad (with the kids still lined up at the back door). He had me pull fuses, check the furnace fan belt, and look more closely at wiring. The smell was still growing. Finally we decided I should just leave the house and call the landlady. Just as I was agreeing to this I took one last trip around the kitchen, sniffing with my stench-filled nose. And suddenly I felt very silly.
Sitting innocently in the very corner of my kitchen counter was the breadmaker that I had completely forgotten I had turned on three hours earlier. 
Light, wispy, stinky smoke was pouring from the vents, but quickly dissapearing into the surrounding air. The new mix had made a wonderful loaf, just a little too big for my pan, and the batter had dripped down the sides and was scorching on the heating element below. In my adrenaline-fogged mind I thought I had checked every appliance that could possibly produce heat, but had forgotten the breadmaker that has simply become a part of the counter to me.
Light, wispy, stinky smoke was pouring from the vents, but quickly dissapearing into the surrounding air. The new mix had made a wonderful loaf, just a little too big for my pan, and the batter had dripped down the sides and was scorching on the heating element below. In my adrenaline-fogged mind I thought I had checked every appliance that could possibly produce heat, but had forgotten the breadmaker that has simply become a part of the counter to me."You know, Mommy," Naomi added, "there was one more good thing that came out of all this."
"Oh really, honey, what's that?" I asked.
"Well, Hannah and I were just fighting over who would do a puzzle when you came up," she explained, "and you made us forget to fight."
It does put things in perspective, doesn't it?
Tuesday, March 15, 2011
Picture Catch-Up: Birthdays, Buggies, and Sunsets
There are so many pictures that I've wanted to share here from the last month that I've fallen behind. I hate to move on and not share them. So this post is my attempt to catch up on birthdays, special events, and pretty sunsets. Enjoy!
It's hard to tell in the pictures, but Hannah has come a long way from her tired, emaciated self of last summer. After being gluten-free for nearly six months, she finally has a healthy appetite and is putting on some weight, most noticeably in those chubby cheeks. At 18 months of age Hannah was in the 75th percentile for height. By last fall she had fallen to below the 10th. After being gluten-free for 5 months she jumped back up to the 35th percentile in height! Her body was ready to grow, it just needed to be able to absorb nutrients. Her bright eyes and returned energy levels are the great health success story for our family. And she didn't mind her gluten-free birthday cake one bit.I also snapped some pictures (discretely) of that Amish traffic jam that we get caught in every Sunday on our way to church. It was a drizzly day, but you can get the idea. The white building is the church, with a water pump outside.
After cleaning the yard, we decided it could use some flowers. They have sprouted now, and some may actually survive to be planted outside. Whether they will actually live outside and look nice remains to be determined.
And I leave you with two more front-porch-sunset pictures. I can't seem to quit taking them, or sharing them. They are a gift to my spirit each time.
Friday, March 11, 2011
An Empty Pig and Unspeakable Excitement
After a couple days of weighing their options, the girls decided to cash in their piggy bank and some of Hannah's birthday money for four tickets to a ballet which will be in town tomorrow. I think it is a magnificent choice. Usually we end up wandering the aisles of Wal-Mart searching for something to spend that birthday money on that won't leave them feeling disappointed in a day or two. Craft supplies have been a wonderful staple, but we already have more than we can use. So this time I suggested that we spend the money on an experience that we can all share together and a memory that we will treasure. They can't wait!
Every teller in the bank smiled today when Naomi heaved that jingling pink pig up on the counter, with Hannah and Toby watching. (Emma was at speech preschool.) Tonight I reminded the girls that tomorrow Daddy would not have to go to work, and that in the evening we would be spending some special Mommy-daughter time together attending a ballet, while Toby and Daddy stayed home and wrestled. "Tomorrow's just going to be a great day!" Naomi sighed.
And this was Hannah's bedtime prayer, "Dear Lord, thank you that we can go to a ballet tomorrow. I'm too, too, too excited. I'm so excited that I can't even speak. In Jesus' name, Amen." I cracked up laughing, to which Hannah responded, "What's so funny?"
"You are," I said, but really I was thinking that I have yet to see anything for which Hannah is too excited to speak. Usually it works quite the opposite way! Let us hope the ballet is all they are dreaming of, but I'll be happy just getting a break from little Mr. T and making a memory with my girls.
Every teller in the bank smiled today when Naomi heaved that jingling pink pig up on the counter, with Hannah and Toby watching. (Emma was at speech preschool.) Tonight I reminded the girls that tomorrow Daddy would not have to go to work, and that in the evening we would be spending some special Mommy-daughter time together attending a ballet, while Toby and Daddy stayed home and wrestled. "Tomorrow's just going to be a great day!" Naomi sighed.
And this was Hannah's bedtime prayer, "Dear Lord, thank you that we can go to a ballet tomorrow. I'm too, too, too excited. I'm so excited that I can't even speak. In Jesus' name, Amen." I cracked up laughing, to which Hannah responded, "What's so funny?"
"You are," I said, but really I was thinking that I have yet to see anything for which Hannah is too excited to speak. Usually it works quite the opposite way! Let us hope the ballet is all they are dreaming of, but I'll be happy just getting a break from little Mr. T and making a memory with my girls.
Wednesday, March 9, 2011
All Things Beautiful
I lay in bed this morning listening to bumps and thumps and loud giggles coming from the kids' room. Naomi was laughing and back to bossing her sisters around, "No, Hannah, it goes like this: from my bed, to your bed, to Emma's bed, to Toby's crib, and you can't touch the floor!" More bumps and giggles followed. I lay and listened partly from thankfulness for a few minutes' rest, but mostly from thankfulness that my six-year-old daughter was climbing and jumping and laughing again.
They froze with guilty faces when I entered the room. Hannah tried to act as if she were simply hopping up and down in front of Toby's crib, rather than climbing out of it. But when my stern face broke into a smile they laughed and showed me the "obstacle course" they had created. "And how are your joints doing today?" I asked Naomi, nonchalantly.
"Well how do you think they're doing," she laughed back, "if I am able to climb from bed to bed like this?" Silly me, I guess that was obvious wasn't it? Naomi was so elated that she took off "running" down the stairs, which is always a bit awkward for her, and ended up feeling quite a pain in her hip from that. This dampened her spirits a little, I think, to realize that she wasn't miraculously "cured," but I focused her on how much better she was, and overall she had a great day. She did end up with quite a bit of ankle pain again tonight, which only reminds me that the previous two days were not simply a bad dream from which we will wake up. They are reality now.
Feeling in a reflective mood again tonight, I dug out a journal I had written to Emma when I was pregnant with her. I haven't seen my journals in almost two years. It is good to have access to them again and to have the time to read through them and remember where we've been. When all was worry and fear during the final few weeks of my pregnancy with Emma I penned a poem for her that brought me comfort again tonight. I had had one of many ultrasounds that day and was especially hit by how I saw a beautiful baby on that screen, and how the doctors saw only problems. This is what I wrote on August 11th, 2007:
Magic wand on my belly
Worry on his face
In a sea of black and white
Something's out of place
There are risk and complications
That he'd like for me to see
There's a sorrow on his face
Because you're not who you should be
But I know the one who's making you
Your tiny toes, your precious soul
And I love how he is forming you
He makes all things beautiful
His ways are not our ways
Wrong to them is perfect to him
His thoughts are not our thoughts
He's knitting you and I will praise him
You're exactly who you should be
He's knitting you and I will thank him
You're a beautiful gift to me
In that sea of black and white
There are chubby cheeks, a rounded nose
They're so blinded by what's wrong
Staring at the thorn, they miss the rose
They froze with guilty faces when I entered the room. Hannah tried to act as if she were simply hopping up and down in front of Toby's crib, rather than climbing out of it. But when my stern face broke into a smile they laughed and showed me the "obstacle course" they had created. "And how are your joints doing today?" I asked Naomi, nonchalantly.
"Well how do you think they're doing," she laughed back, "if I am able to climb from bed to bed like this?" Silly me, I guess that was obvious wasn't it? Naomi was so elated that she took off "running" down the stairs, which is always a bit awkward for her, and ended up feeling quite a pain in her hip from that. This dampened her spirits a little, I think, to realize that she wasn't miraculously "cured," but I focused her on how much better she was, and overall she had a great day. She did end up with quite a bit of ankle pain again tonight, which only reminds me that the previous two days were not simply a bad dream from which we will wake up. They are reality now.
Feeling in a reflective mood again tonight, I dug out a journal I had written to Emma when I was pregnant with her. I haven't seen my journals in almost two years. It is good to have access to them again and to have the time to read through them and remember where we've been. When all was worry and fear during the final few weeks of my pregnancy with Emma I penned a poem for her that brought me comfort again tonight. I had had one of many ultrasounds that day and was especially hit by how I saw a beautiful baby on that screen, and how the doctors saw only problems. This is what I wrote on August 11th, 2007:
Magic wand on my belly
Worry on his face
In a sea of black and white
Something's out of place
There are risk and complications
That he'd like for me to see
There's a sorrow on his face
Because you're not who you should be
But I know the one who's making you
Your tiny toes, your precious soul
And I love how he is forming you
He makes all things beautiful
His ways are not our ways
Wrong to them is perfect to him
His thoughts are not our thoughts
He's knitting you and I will praise him
You're exactly who you should be
He's knitting you and I will thank him
You're a beautiful gift to me
In that sea of black and white
There are chubby cheeks, a rounded nose
They're so blinded by what's wrong
Staring at the thorn, they miss the rose
Tuesday, March 8, 2011
Eby Girls Health Updates
I clearly haven't decided exactly what I want my blog to be. It started as a way to share the happy, the funny, and the exciting moments in my life with others. It helped me to focus on these things and find the joy each day. But I find that it helps me also to have an outlet for the sad and the difficult moments of my life. Especially with Matt working long hours, I find myself with quiet evenings and sometimes overwhelming emotions, and this is where it spills out. Many of you reading say that you are glad I am honest and open and that it encourages you too. So I will continue to be open.
Some of you have asked for more information on Naomi's joint pain, so here is the synopsis of that journey. Naomi's been having joint pain since last summer. When we found out she had celiac disease in the fall we were hopeful that a gluten (wheat) free diet would help the joint pain, but it has only gotten worse. Celiac disease is an autoimmune disease, meaning the body attacks itself. With celiac the attack is triggered by gluten (or wheat) in the diet, but when your immune system goes haywire you are also more likely to have other autoimmune diseases where your body attacks itself for other reasons. About 10% of kids with Celiac also have juvenile rheumatoid arthritis, a lifelong and debilitating disease of joint pain. I am afraid that that is what we might be dealing with with Naomi. Her joints have become more and more painful and stiff lately.
Yesterday she had trouble going up and down stairs or even walking when she woke up. The stiffness and pain improve as she gets her joints moving, but she is never pain free. Today she had trouble completing her school work because her wrist hurt so badly. I made her a pain rating scale with little sad faces so she could communicate her pain level to me today, and she rated her wrist pain at a 4 out of 10, with 10 being the worst pain imaginable. Tonight as I tucked her in bed she said the pain in her ankles was a 7 or 8 (with little tears in her eyes).
Typically Ibuprofen is given to help control inflamation, but with Naomi's kidney disease she is not allowed to take Ibuprofen. There are some heavy-duty immune-system-altering meds that may help, but they have some heavy-duty side-effects too. We are now waiting to get an appointment with a specialist in joint pain (rheumatologist) to see if we can get a concrete diagnosis and some help for Naomi.
Add on top of this scenario that Naomi and Emma had brain MRIs last Wednesday to see if they had signs of a certain syndrome that can sometimes accompany their kidney/liver disease and would have explained their speech and motor-skill difficulties. The MRIs didn't show signs of that syndrome, but turned up other worrisome findings. Emma's shows areas of her brain that do not have the myelin coating they should have by her age. I guess this is often observed in kids with developmental delay, but I'm not sure if it's a myelination disorder that causes delay or just that developmental delays are reflected in delayed myelination. Which causes which? We are supposed to follow up this finding with a visit to a neurologist, so I suppose I can ask him or her then.
Naomi's MRI showed a possible cyst in the pineal gland--a gland located in the very center of the brain that is responsible for making certain hormones. Pineal gland cysts are fairly common in adults but not in children. She will need to follow up with a neurosurgeon who will probably want a follow-up MRI, and if the cyst grows we may be facing deep brain surgery (something like a 1 in 4 chance from what I see on the Internet, but who knows how reliable that is?) All of this equals three more specialist appointments at the children's hospital which is a six-hour round-trip drive every time we go.
I feel a strange combination of worry and numbness, I think. After awhile trips to pediatric specialists become commonplace. Sometimes the worries turn out to be for nothing, and sometimes scary diseases actually lie beneath them, but strangely enough, both scenarios have almost become normal. This is our daily life, and I wonder how many people are tired of hearing about it or must think I am a hypochondriac on behalf of my children by now. I feel like I need to post a video of Naomi struggling to come down the stairs in the morning along with an explanation of how she is not prone to exaggeration and melodrama lest people think I make this stuff up to get attention.
But I don't make it up. Strangely, God has chosen to fill our lives with one medical challenge after another, and one comfort I have as I walk this wild, winding path is sharing it with others. So thank you for taking the time to read this, and to encourage my heart, and to pray for my kids, it is a blessing to me.
Some of you have asked for more information on Naomi's joint pain, so here is the synopsis of that journey. Naomi's been having joint pain since last summer. When we found out she had celiac disease in the fall we were hopeful that a gluten (wheat) free diet would help the joint pain, but it has only gotten worse. Celiac disease is an autoimmune disease, meaning the body attacks itself. With celiac the attack is triggered by gluten (or wheat) in the diet, but when your immune system goes haywire you are also more likely to have other autoimmune diseases where your body attacks itself for other reasons. About 10% of kids with Celiac also have juvenile rheumatoid arthritis, a lifelong and debilitating disease of joint pain. I am afraid that that is what we might be dealing with with Naomi. Her joints have become more and more painful and stiff lately.
Yesterday she had trouble going up and down stairs or even walking when she woke up. The stiffness and pain improve as she gets her joints moving, but she is never pain free. Today she had trouble completing her school work because her wrist hurt so badly. I made her a pain rating scale with little sad faces so she could communicate her pain level to me today, and she rated her wrist pain at a 4 out of 10, with 10 being the worst pain imaginable. Tonight as I tucked her in bed she said the pain in her ankles was a 7 or 8 (with little tears in her eyes).
Typically Ibuprofen is given to help control inflamation, but with Naomi's kidney disease she is not allowed to take Ibuprofen. There are some heavy-duty immune-system-altering meds that may help, but they have some heavy-duty side-effects too. We are now waiting to get an appointment with a specialist in joint pain (rheumatologist) to see if we can get a concrete diagnosis and some help for Naomi.
Add on top of this scenario that Naomi and Emma had brain MRIs last Wednesday to see if they had signs of a certain syndrome that can sometimes accompany their kidney/liver disease and would have explained their speech and motor-skill difficulties. The MRIs didn't show signs of that syndrome, but turned up other worrisome findings. Emma's shows areas of her brain that do not have the myelin coating they should have by her age. I guess this is often observed in kids with developmental delay, but I'm not sure if it's a myelination disorder that causes delay or just that developmental delays are reflected in delayed myelination. Which causes which? We are supposed to follow up this finding with a visit to a neurologist, so I suppose I can ask him or her then.
Naomi's MRI showed a possible cyst in the pineal gland--a gland located in the very center of the brain that is responsible for making certain hormones. Pineal gland cysts are fairly common in adults but not in children. She will need to follow up with a neurosurgeon who will probably want a follow-up MRI, and if the cyst grows we may be facing deep brain surgery (something like a 1 in 4 chance from what I see on the Internet, but who knows how reliable that is?) All of this equals three more specialist appointments at the children's hospital which is a six-hour round-trip drive every time we go.
I feel a strange combination of worry and numbness, I think. After awhile trips to pediatric specialists become commonplace. Sometimes the worries turn out to be for nothing, and sometimes scary diseases actually lie beneath them, but strangely enough, both scenarios have almost become normal. This is our daily life, and I wonder how many people are tired of hearing about it or must think I am a hypochondriac on behalf of my children by now. I feel like I need to post a video of Naomi struggling to come down the stairs in the morning along with an explanation of how she is not prone to exaggeration and melodrama lest people think I make this stuff up to get attention.
But I don't make it up. Strangely, God has chosen to fill our lives with one medical challenge after another, and one comfort I have as I walk this wild, winding path is sharing it with others. So thank you for taking the time to read this, and to encourage my heart, and to pray for my kids, it is a blessing to me.
Monday, March 7, 2011
Love Without Boundaries
For Naomi
When I first found out that God had given you to us
I cried at the thought of losing you silently
As I had lost the first two babies God gave us
When they told me your kidneys were too bright
I cried at the thought of losing you quickly
Before I had the chance to know you
When they took you from me
And hooked you to monitors in a noisy room
When they stuck you again and again for tests
And I could only stand silently by
I cried at the childhood you had lost already
And the motherhood I had imagined and lost before it began
And then I began to walk the path before me
I promised to be beside you
To give you what I could
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
When you screamed night and day for ten months
When you needed therapies to learn to walk
And just to cope with life
When you rocked yourself endlessly back and forth
Or spun in circles and refused to look in my eyes
When you struggled and strained
Just to get a sentence out between stutters
I cried that I might never know my daughter
Who seemed so trapped within herself
When we learned your diagnosis was far worse
Than our doctors had been willing to tell us
And more diagnoses began to pile themselves on
I cried knowing suffering was only waiting for you
And you would not escape
When I had to tell you that God had chosen
To make you differently
And you bravely accepted that
You inspired me to bravely accept his gift as well
When you rolled up your sleeves
And offered your arm to the endless needles
You taught me that fighting
Only causes us more pain
When you cried through stomach aches every day
And fought me violently over tiny things
And began to complain of aches and pains
That no six year old should have
I gave you all I could give
Calls to doctors
Pleading for tests
Late nights praying
Research on the Internet
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
When we found answers and made changes
I cried at seeing signs of life in you again
But disease stalks you
And even in the sun
I know it waits in the shadows
This morning when you came
All sored and stiff-jointed down the stairs
When you couldn't bend your ankles or knees
Without welling up in tears
When you sat in a chair reading
Because it hurt too much to walk
And struggled to stand up like your great grandparents do
I knew disease had pounced again
I called doctors
I made appointments
I rubbed your knees
And got you to laugh
And when you weren't looking
I cried at the thought of losing you slowly
Of what you may go through on the way
I gave you what I could today
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
Songs at bedtime
That speak of a day
When we'll understand why
And we'll see His face
When I first found out that God had given you to us
I cried at the thought of losing you silently
As I had lost the first two babies God gave us
When they told me your kidneys were too bright
I cried at the thought of losing you quickly
Before I had the chance to know you
When they took you from me
And hooked you to monitors in a noisy room
When they stuck you again and again for tests
And I could only stand silently by
I cried at the childhood you had lost already
And the motherhood I had imagined and lost before it began
And then I began to walk the path before me
I promised to be beside you
To give you what I could
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
When you screamed night and day for ten months
When you needed therapies to learn to walk
And just to cope with life
When you rocked yourself endlessly back and forth
Or spun in circles and refused to look in my eyes
When you struggled and strained
Just to get a sentence out between stutters
I cried that I might never know my daughter
Who seemed so trapped within herself
When we learned your diagnosis was far worse
Than our doctors had been willing to tell us
And more diagnoses began to pile themselves on
I cried knowing suffering was only waiting for you
And you would not escape
When I had to tell you that God had chosen
To make you differently
And you bravely accepted that
You inspired me to bravely accept his gift as well
When you rolled up your sleeves
And offered your arm to the endless needles
You taught me that fighting
Only causes us more pain
When you cried through stomach aches every day
And fought me violently over tiny things
And began to complain of aches and pains
That no six year old should have
I gave you all I could give
Calls to doctors
Pleading for tests
Late nights praying
Research on the Internet
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
When we found answers and made changes
I cried at seeing signs of life in you again
But disease stalks you
And even in the sun
I know it waits in the shadows
This morning when you came
All sored and stiff-jointed down the stairs
When you couldn't bend your ankles or knees
Without welling up in tears
When you sat in a chair reading
Because it hurt too much to walk
And struggled to stand up like your great grandparents do
I knew disease had pounced again
I called doctors
I made appointments
I rubbed your knees
And got you to laugh
And when you weren't looking
I cried at the thought of losing you slowly
Of what you may go through on the way
Love without boundaries
Hope in pain
Trust in your Creator
Thankfulness each day
Songs at bedtime
That speak of a day
When we'll understand why
And we'll see His face
Thursday, March 3, 2011
Looking in Their Eyes
Her eyes are wide set, and her head comes to an unusual peak. Her mouth gapes slightly as she walks on her knees and drags her limp feet behind her. I smile warmly at her and wave a little. Her face shines excitedly at my greeting--that is all the answer she knows how to give. "Look, Emma," I say, loud enough for the other girl's grandmother to hear, "look at that pretty little girl! She is about your age. Go and say 'hi' to her." Emma cheerfully goes and utters robotically, "Hi, my ay ih Eh-uh (Hi, my name is Emma)," which is all the greeting she knows how to give. The girls understand each other perfectly. The grandmother smiles and tells Emma, "Her name is Kylie."
Just beyond our group sits a family with a baby girl in a car seat. The entire left side of her face is swollen with a large red birthmark. Another boy waits on his mother's knee with a forehead enlarged enough to seem more at home in a science fiction movie. In the open hallway behind our chairs they go by: a boy strapped into a wheelchair, blankly staring at the ceiling; tiny triplets in their elongated stroller; a little girl in a gown clutching her blanket tightly; and the tired, journey-weary parents who care for all these children.
In a stroller sits a baby boy with curly blond hair and a face that cannot hide his brain's impairment. He shakes the small, yellow maraca in his hand and smiles with his entire body at the delightful noise he has made. I look into those shining grey eyes and let my face mirror his excitement, "Do you have a maraca?!" I ask. "We got maracas at our last appointment here too!" His mother's face brightens and we talk about her son as if his very obvious differences didn't register at all in my mind. His mother knows I understand because I sit in this waiting room with my own three girls. We are all here for the same reason.
I walk the halls of the children's hospital often. I know the heartbreak, the worry, the weariness; and I know that nothing refreshes my spirit more than for a stranger to look beyond my child's differences and see their beauty; to look into their eyes and speak to them as if they were any other child at the park that day. So when my instinct wants to stare and "politeness" tells me to look away, I stoop down and look into their eyes. I smile and talk about their pretty eyes, or pink pigtails, or gorgeous curls, or the stuffed animal in their hand. I smile at their parents and we chat like any two mothers in the grocery store.
"Mommy, I'm dying of hunger, and I need to have my ultrasound right now!" Hannah interrupts as I talk with Kylie's grandmother.
"I'm sorry," I apologize to the grandmother, "we've had a very long day." I speak with Hannah a moment then venture to share some of our story. "Naomi and Emma had MRI's at 8:00 this morning," I say, gesturing to the bright pink bandages around their hands where their IV's had been, "and, Hannah, here, is having trouble waiting for her ultrasound." The grandmother nods, but I can tell she is wondering. "They have cystic kidneys and liver fibrosis," I offer, "Hannah's getting a screening ultrasound because her doctor thought her liver felt a little enlarged."
And now the grandmother's eyes are sad, she nods again and offers her own story, "Well, Kylie is the result of a shaken baby. She's been in foster care with my daughter since she was three months old, and they're in the process of adopting her now." We are no longer two strangers chatting like any other moms, the bond now is much stronger. Empathy and encouragement flow across that bond without any further words. We need to be moving to our next appointment, but I offer the most encouraging words I can to Kylie's grandmother, the words that warm my heart and the hearts of all parents who have children with special challenges, "She is really beautiful."
Just beyond our group sits a family with a baby girl in a car seat. The entire left side of her face is swollen with a large red birthmark. Another boy waits on his mother's knee with a forehead enlarged enough to seem more at home in a science fiction movie. In the open hallway behind our chairs they go by: a boy strapped into a wheelchair, blankly staring at the ceiling; tiny triplets in their elongated stroller; a little girl in a gown clutching her blanket tightly; and the tired, journey-weary parents who care for all these children.
In a stroller sits a baby boy with curly blond hair and a face that cannot hide his brain's impairment. He shakes the small, yellow maraca in his hand and smiles with his entire body at the delightful noise he has made. I look into those shining grey eyes and let my face mirror his excitement, "Do you have a maraca?!" I ask. "We got maracas at our last appointment here too!" His mother's face brightens and we talk about her son as if his very obvious differences didn't register at all in my mind. His mother knows I understand because I sit in this waiting room with my own three girls. We are all here for the same reason.
I walk the halls of the children's hospital often. I know the heartbreak, the worry, the weariness; and I know that nothing refreshes my spirit more than for a stranger to look beyond my child's differences and see their beauty; to look into their eyes and speak to them as if they were any other child at the park that day. So when my instinct wants to stare and "politeness" tells me to look away, I stoop down and look into their eyes. I smile and talk about their pretty eyes, or pink pigtails, or gorgeous curls, or the stuffed animal in their hand. I smile at their parents and we chat like any two mothers in the grocery store.
"Mommy, I'm dying of hunger, and I need to have my ultrasound right now!" Hannah interrupts as I talk with Kylie's grandmother.
"I'm sorry," I apologize to the grandmother, "we've had a very long day." I speak with Hannah a moment then venture to share some of our story. "Naomi and Emma had MRI's at 8:00 this morning," I say, gesturing to the bright pink bandages around their hands where their IV's had been, "and, Hannah, here, is having trouble waiting for her ultrasound." The grandmother nods, but I can tell she is wondering. "They have cystic kidneys and liver fibrosis," I offer, "Hannah's getting a screening ultrasound because her doctor thought her liver felt a little enlarged."
And now the grandmother's eyes are sad, she nods again and offers her own story, "Well, Kylie is the result of a shaken baby. She's been in foster care with my daughter since she was three months old, and they're in the process of adopting her now." We are no longer two strangers chatting like any other moms, the bond now is much stronger. Empathy and encouragement flow across that bond without any further words. We need to be moving to our next appointment, but I offer the most encouraging words I can to Kylie's grandmother, the words that warm my heart and the hearts of all parents who have children with special challenges, "She is really beautiful."
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