Wednesday, October 29, 2014

Kawasaki Disease

Last week, I was feeling curmudgeonly about Halloween. My feelings of irritation toward its existence occupied way more space in my mind than it needed to. On Thursday morning when I had some free time before Matthew woke up, I even blogged about it. Now, I can't spend any energy at all thinking about Halloween.

Around lunch time on Thursday, Matthew was complaining that his back hurt. Thursday evening, we were in the emergency room of the Children's Hospital and by the wee hours of the morning, we were admitted. It turns out, Matthew had a rare condition called Kawasaki Disease, which is a virus from unknown causes that attacks the arteries, and ultimately, the heart.

This story is very long, but I think it shows God's incredible attention to detail, so I am going to try to spell it out. I also hope that if anyone googling needs some information on Kawasaki Disease, this may help them.

Two Saturdays ago (approximately 10 days ago), our family joined our good friends for our annual tradition at the Pumpkin Patch. Matthew behaved and looked 100% normal.

The next morning was Sunday (this is Day 1--the distinction of which will make sense as you read). When he woke up,  his bottom was red. We thought it was diaper rash because there had been some hay in the pumpkin patch that got in his clothes and diaper (side note, I think he and his best friend have made a pact to go to college in diapers). I put him in the bath for a while, then got him ready and we went to church.

When we picked him up from his class at church, he felt warm. But it was a hot day and our church building is often warm so we didn't think much of it. He was a little tired, but otherwise seemed fine. Some friends invited us to lunch and we joined them. During lunch, Matthew went downhill, very quickly.  He became lethargic and irritable and grew hotter by the minute. We quickly wrapped things up and came home. When we got home and undressed him, the rash had spread all over his body and he had a fever of over 104 degrees.  I gave him a cool bath and put him to bed and he slept all afternoon. That evening he was still warm, covered in rash, and tired, but had no other problems.

The next morning (day 2), he started complaining of sharp stomach pains and vomiting. He continued to have rash and fever. The pediatrician was able to see him first thing that morning and she concluded that it was just a virus. Matthew has developed rash with illnesses before. I thought the vomiting might have been from fever--I know that I vomit when my fever gets too high.  She checked him for strep and a UTI both came back negative. I took him home and kept his activity level low and we stayed here at home. He did not have much appetite. He was extremely irritable.

By Tuesday and Wednesday (days 3 and 4), the rash had gone away but the fever remained and I noticed he was still extremely irritable. At the time though, I chalked it up to him being tired (he'd had night wakings every night for more than a month--we were both exhausted!) and being 3.

On Thursday (day 5), he woke up complaining of pain in his diaper area. He was still listless, irritable, and warm. My mom had come to visit that morning--a visit he had been looking forward to for weeks, and he couldn't be rallied to excitement. At lunch time he started grabbing his back and complaining of sharp pain. I got him calmed down and put to bed for a nap. While he was sleeping, I called the pediatrician, whose nurse said we could return the next day for another urinalysis. I pressed her, knowing that UA results take a few days and we were going into a weekend. I asked her what else they could do on site and the end result was not much in the way of diagnostic tests. If the rapid test for the UA showed nothing, we'd wait for the complete results. If they suspected something, they'd send us to an imaging center for an X Ray. I knew we were heading into a weekend and those wouldn't be read until at least Monday, either. She said that if he woke up from his nap and was still in considerable pain, the best way to get tests immediately was to go to the pediatric Urgent Care run by our local Children's Hospital.

When he woke up, he was complaining of pain more frequently and more emphatically. Quickly, he was inconsolable. His eyes looked bloodshot, but I figured it was from exhaustion and crying. The skin on his bottom had begun to peel like a sunburn. I packed up a backpack with a few toys and we headed out. I was expecting them to diagnose him with a UTI or a kidney infection. I figured we'd wait around to see a doctor for a while, get diagnosed, and be sent on our merry way with a pain killer and antibiotic.

The doctor saw us rather quickly. He initially suspected some of the same things-childhood virus, UTI, and a few other things I can't even remember. However, as I talked and mentioned the things I had seen over the week, the doctor's body posture changed. After a while, he said, "I think I know what this is but I haven't seen it in a very long time. I need to excuse myself and read on it before I tell you anymore." A little while later, he was back, with instruction to go to the Children's Hospital ER. He told us that we would probably see the ER doctor, who would probably admit us, and have us see a Cardiologist and an Infectious Disease Specialist. Wait. WHAT? What happened to the UTI I was certain he had? That I could handle. A Cardiologist? For a 3 year old? My head was spinning. My mom stopped at home for some pajamas and other essentials for Matthew and I and met us up there.

In the ER, we saw more doctors than I can remember. My husband said that there must have been some sort of note in the doctor's lounge: "Hey! Go check out bed 6 for something you've probably never seen before!"  Around 4:00 am after tons of blood work, a nose and throat culture, and another UA, we were finally admitted, with all of the ER doctors and the hospital admitting doctor concluding that the diagnosis of Kawasaki Disease was correct. He and I slept for a couple hours in his room before the doctors and nurses started coming around at 7:00.
Matthew and the best daddy in the world, sleeping in the ER gurney while waiting for admission.


Another new doctor visited us, who said she thought it was Kawasaki but that the Infectious Disease doctor would need to confirm. He came later, and confirmed it, as much as he could. They explained that there is no test to confirm Kawasaki, but all the tests they ran ruled out everything else, and other things they discovered in his blood and fluid showed signs of KD.  The only test to confirm KD is after a patient has already suffered irreparable damage so they can only make a clinical diagnosis and treat accordingly.

Kawasaki Disease is a virus that inflames the arteries, and if left untreated, can cause coronary aneurysm, heart attack, or other heart damage. They have no idea what causes it.  It is very rare. It primarily affects young children, and boys more than girls.

The treatment is a 12 hour infusion of IV Immunoglobulin that somehow, protects his heart. Then he has to be on an aspirin regimen, and continue to follow up with a cardiologist.

Because they had to culture Matthew, he was in isolation for the first half of his hospital stay. Adult visitors could come and go, but he could not leave his room. Being trapped in 4 unfamiliar walls for days with a frightened, sick, tired 3 year old was very difficult. The first full day there was very hard. One of the doctors had said that the IVIG treatment was very uncomfortable and that Matthew would be very aware of it. He was overwrought from being tired, overstimulated from pain, and emotionally highstrung from being trapped. I was dreading the IVIG for him. My heart hurt so badly.  I learned that in times of great stress, I can handle the big things. I grew up in hospitals. I've literally spent months in them at various family members' bedsides. The big stuff, I was able to take in stride. But I broke down in tears when my little boy was crying for a toy and I had nothing to give him and the nurse I had asked 3 times for one wasn't getting off her duff to help. Apparently, my control-freak self is smart enough to know it can't control the big stuff, but then it over compensates on the small stuff.

The IVIG was ordered around 10:00 in the morning. But because of whatever black hole exists in all hospitals where orders go and hang out a while before they resurface, the treatment did not actually arrive and begin until 5:00 or 6:00pm. By that time, Matthew was so exhausted, he slept through all of it.  He didn't have to deal with the discomfort or the headache or the panic from feeling restrained.  Huge hurdle 1, down.

By the middle of the afternoon the third day, his cultures came back negative and they released him from quarantine. He could now go to the play room, the playground, the activity center, the cafeteria, on walks, and outside, utilizing all of the wonderful resources the hospital had to make the stay easier for kids. Immediately, his anxiety started to decrease. I don't think we returned to that room for 5 hours that first time we were released.

These are some of the very many God things I noticed:

-Because one of the main diagnostics of KD is 5 days of fever, the disease cannot be diagnosed until day 5. Treatment must begin by day 10 in order to have the best chance of coming through it without heart damage. Matthew was diagnosed on day 5. Treatment began on day 6. His diagnosis came at absolutely the earliest possible moment. If we had waited through the weekend and into the beginning of this week for lab results and/or radiology to come back after the weekend, we would have been to the 10 day danger zone mark.

-Though the disease is rare, the first doctor we saw had the experience to recognize it, and the humility to research his findings in his own unfamiliarity.

-Phoenix Children's Hospital is one of the best Children's Hospitals in the country. The doctors we encountered were very familiar with KD and how to treat it. In reading some of the KD forums, many many parents and children have a very difficult time getting a correct diagnosis because many doctors have never encountered it and because so many of the symptoms are typical of the age and of other childhood illnesses.

-Matthew showed ALL of the hallmark signs of KD, on both his body and in his blood and fluids, making the disease as confirmable as possible without the heart damage that is the only thing that can verify 100%. Additionally, every single doctor who treated him (more than 10) agreed on the KD diagnosis. I really appreciate that there was no hesitation or wondering so they could just move forward with treatment.

-I really believe the Lord pushed me to take him to the Urgent Care that night. On their own, irritability, rash, fever, red eyes, and even some pain are normal in children going through threenagerhood, diapers and potty training, and growth spurts and growing pains. None of those things are concerning on their own and Matthew has had them at other times in different combinations and I haven't been alarmed. But this time, I distinctly felt the need to take him in, despite my usual bent toward "wait and see" when it comes to common colds and illnesses.

-I also believe the Lord brought all of the different symptoms of the previous week to my mind with exacting precision. He loosed my tongue to mention things that I didn't even realize I had taken note of. All of the information and the timeline I gave were what piqued the first doctor's interest toward KD. Had I not mentioned some of the things that had come and gone earlier in the week, we might not have had a correct diagnosis.

-He was able to sleep through his infusion

-He did not have a negative reaction to the infusion

-The infusion seems to have worked and so far as we can tell, he does not need another.

-His first echocardiogram was clear.

-On our third day there, he was released from isolation, which made the rest of the stay much much easier. They said that cultures can take up to 2 weeks to come back so originally they said he would be in isolation the entire time we were there. To be released from it early was a real gift and it really helped Matthew's anxiety.

-He manifested each symptom necessary to make a diagnosis, but each symptom lasted almost as short a time as possible. His rash and vomiting were gone in 2 days and he didn't get the pain until day 5. The symptoms appeared long enough to be noticed and noteworthy, but not any longer. I think this was a sweet mercy that he didn't have to be excessively miserable all week long.

-My mom "just happened" to arrive for a visit the day the hospitalization started, so she was able to help us with sitting with Matthew, doing things we needed, etc

-My dear friend was also available and brought my meds to me in the middle of the night and ran errands for me. People were kind to show love to Todd and I, too.
This was waiting on my counter for me next to my coffee pot when I got home (this was not one of the errands I asked her to do). 


-Many family members and friends came to visit Matthew. We learned while there that most children don't even have parents who visit them around the clock, much less other visitors. Matthew had an almost constant stream of people who wanted to cheer him up and distract him. I am so grateful to know my little boy is so loved.
Playing with one of the many gifts friends and family brought him to help keep the isolation manageable. This is after his infusion and we really saw him start to turn around. He was even singing to his tractors. It was so good to hear my little boy sing again. He was singing, "I love to dump the garbage in my backhoe, oh yeah!"

-My Mom's Church has a ministry called Wrapped in Prayer. A guild of ladies make quilts for people who are going through a hard time, and then they and others in the church tie knots to join the layers together. As a person ties a knot, they pray over the quilt and the person receiving it. Then the blanket can "wrap" the recipient literally, representing the prayers they are wrapped in. The group made a quilt for my little boy and the Pastor's Wife dropped it off at our home, along with a gift from the Pastor and his wife. The church shared some photos of their Sunday morning where people came to pray and tie knots. I've never met most of the people in the photos. What a beautiful way to show love!


-There is a nationally known KD research clinic just a few hundred miles away from here so we have access to expert care if things get complicated. I've already been in touch with a doctor there who has been so sweet to help us with a few things.

-KD is not contagious, so his best friend and her sister, who we were with the day before, and the kids in his Sunday School were not put at risk by being with Matthew.  It also means that as he has energy and stamina, he can still get out of the house now a bit.

-Our employees really stepped up to the plate and took over everything so Todd did not need to worry about the shop. The only thing he had to go there for was to sign checks for payroll. I am so grateful that we have kind and compassionate men working for us, who have integrity, initiative, skill, and work ethic to work and be proactive even when the boss is away and who really showed us love in our time of struggle. They even made Matthew his own "License Plate" wishing him to get well. They hand painted and etched this. This was another tears moment for me.


-Matthew is sleeping right now. This alone is a huge, huge gift because sleep has been so hard for him. He also took 2 naps the day we were admitted, which really helped when we were up until 4:00am waiting for admission.

Other things I don't want to forget:

One nurse asked him if his mommy gave him his beautiful blue eyes or if his daddy did. Matthew looked at her puzzled, and then emphatically said, "JESUS did!"  You go, little man.

Our friends brought him a milkshake. He woke up while they were there and I told him and he sleepily mumbled, "Oh, that's sweet of them."



On Monday, they released us to come home. It appears that Matthew is out of the danger zone. The recovery time from KD is months long. He'll require echocardiograms for the next several months and then periodically over the next several years. The treatment he received has been used for about 30 years for KD and so far, seems to have good long-term results as far as protecting the heart goes and those now-adults are still doing well overall.

The disease has 3 stages. Matthew is in stage 2, which is arthritis, GI problems, and skin problems. He's still pretty miserable. They tell me his brain is inflamed, as are his nerve endings, so he is hypersensitive and angry often. My understanding is that this stage can last up to 2 weeks. Then stage 3 is when everything starts returning to normal, but it can take 8 weeks. So we have a little bit of a bumpy road in front of us.

We'd love your prayers for our little guy. The hardest struggle for him is that he feels lousy and doesn't understand. His skin is peeling off in sheets and it scares him. He's on an emotional cliff most of the time and the littlest things set him off. He wants to do things, but he has no energy or stamina to actually express the pent-up energy and feelings he has. So then he gets frustrated, and he's already emotionally fragile from the inflammation. The doctors assure us that KD doesn't have a lot of long term affects but we've been reading that a lot of kids do have struggles for years thereafter. We'd appreciate prayers that his recovery is quick and permanent. While he's on an aspirin regimen, for him to get the flu would be extremely dangerous. He got a flu shot, but that may or may not be effective, given that flu season hasn't really started yet so they don't know if the strains in this vaccine are the ones that will be in the US this winter. We'd appreciate your prayers that he does not get it. He never has before and Todd and I don't usually get it either, but extra prayers would be appreciated.

The hardest struggle for us as his parents is to know how to comfort him. I ache to take away his pain. It's also very difficult to navigate the landmines of his mood and the extreme anger, and comfort him and extend extra grace for him, without letting him be a total monster. When we know it's really truly not his fault that he's behaving this way, it's hard to discipline him for it. But we can't let him have carte blanche to be a monster, either. To be honest, our house feels rather like a war zone and we're on eggshells a lot. It's exhausting for us--I can't even imagine what it's like for him. Todd and I need prayers for wisdom on how to walk this line and our whole home could use prayers for supernatural peace. We're living on pancakes and grilled cheese sandwiches because at the end of the day, it's all I have energy left to make. He also can't always tell us what's bothering him so we need wisdom for being able to identify what's ailing him to be able to relieve it, in such a way that he'll accept help. Right now, he is very afraid of anything that even remotely resembles medicine.

This also affects our transfer. Because of the stress and being at the hospital, I forgot to take the last few days of pills so it changes the timeline for everything. It's possible that we can still course-correct, but it will depend on if my body cooperates. If not, we'll have to stop and start over. The date is no longer November 20. We won't know when it is until and unless certain things happen biologically. Now that I know we have an unknown amount of medical bills out there waiting for us, it was tempting to postpone again, but if we keep waiting for when the money can't be used on anything else, it will never happen. We're just moving forward in faith that God will provide.

Thanks for all your prayers for our little family!


*******
Signs of Kawasaki Disease:

If your child has high fever (over 101) for 5 days in a row, AND any 2 or more of the following symptoms, please ask the doctor to evaluate him or her for Kawasaki Disease. Matthew had all of these symptoms at one point or another during the days and hours preceding his diagnosis.

-"Strawberry" tongue (red, swollen, and bumpy)
-Body rash that has no other cause, especially rash in the diaper area
-Swelling in the hands and/or feet
-Bloodshot eyes without discharge
-Swollen lymph nodes in the neck

Additional symptoms (but they're not diagnostic like the above ones). Matthew had all of these too:
-Extreme irritability
-Nausea or vomiting
-Peeling of the skin

For more information, go here: http://www.kdfoundation.org/

Thursday, October 23, 2014

Abstaining from Halloween

My facebook feed is full of pictures accompanied by the quotation, "I'm so glad I live in a world where there are Octobers." In many ways, October is lovely. In Phoenix, it's the first time we start seeing regular relief from 100 degree temps. We see fall leaves and Pumpkin Spice lattes and Christmas is coming.

But it also means Halloween, and the longer I am a parent, the more I grow to really loathe Halloween and it makes me anxious for the end of the month to come as quickly as possible.

I wasn't always a Halloween Curmudgeon. I have fond memories of costumes and trick or treating and candy from my childhood. I also think Halloween of 30 years ago was different than it is now, at least in my perception.

On Matthew's first Halloween, we dressed him in costume and walked around with friends while their older kids trick or treated. I suppose it was my first time "seeing" Halloween. I've regretted the decision to take him out that night. At 10 months old, his eyes were exposed to images of death and darkness and fear and he was afraid. Halloween is no longer celebrated in such a way as to give cute little kids candy. It's become an all-out free all for adults and almost-adults to be either as dark, gruesome, and scary or as immodest and vampy as legally possible.  We couldn't approach a door for candy without passing blood, guts, witches, severed heads, skeletons, monsters, and tombstones along our way.

It's just so very dark. True, spiritual, ethereal darkness. I get near it and my heart and spirit feel oppressed. I don't think the macabre is funny or entertaining. I don't understand why we celebrate it, even in fun or jest.

As Matthew has grown older, he can ask about the things he sees. The dark images frighten him. It makes me angry that we can't go in to Target or walk down a strip mall without him seeing something that frightens him. Maybe I'm hypersensitive because Matthew is a highly anxious child. I hate that images of darkness and fear are force fed to him at 3 years old. I see his little mind as a blank slate full of light, and as he gets older, that light is slowly replaced with the darkness that we know as adults that comes with fear and death and sin. We spend the rest of our adult lives trying to keep our minds away from the darkness. I hate everything that introduces that struggle one second sooner, especially in the name of entertainment. I want to fight to keep his innocence for as long as possible. He has his whole adult life to know real fears and loss and pain and to see what true darkness is. I have no interest in throwing it around for sport, now.

Completely unrelated, I also think trick or treating sends mixed messages about safety and courtesy. 364 other days of the year, it's considered rude and inappropriate to walk around asking people to give you things. And it's never, ever ok under "normal" circumstances to go to a stranger's house for candy, so I think it sends conflicting messages to say, "except this one time it's ok." It's not that I think he'll get a piece of poisoned candy from a neighbor. But I think I set him up for confusion when very strong safety rules are changed for one day. Our neighbors aren't strangers and I would let him go see them because it doesn't confuse the safety message, but for whatever reason, none of our neighbors participate in it, either.

I love seeing little kids in costume and I hope they eat themselves silly on all the candy they want. I think dress up is fun and I love pumpkins. And I know there are lots of people who conscientiously participate in Halloween. I love that we still have the freedom to make these choices for our own families. And if there was a way we could participate in the genuine childhood light fun of Halloween without the darkness, we probably would. I remember Halloween being fun and sweet and I don't remember feeling fear or darkness.

I read lots of arguments about not shutting the world out for Halloween and about inviting the darkness in so that it can see the light. I think there is a valid place for that. However until my son can discern the light from the dark and understand the images he sees, I want to protect him from the darkness. When he has the discernment of the Holy Spirit, inviting the darkness is a completely different choice. When he is older and can logically understand that the fear is artificial and understand why the world celebrates darkness, Halloween will be a different conversation and we'll invite him to participate in making decisions about it.

One day I think it would be fun to be the "cool house" where every child knows they can come and receive a smile and warmth and their favorite treat and we could just shine love and warmth and light. That probably won't happen until we move because no one has trick or treated our street in years given how it is set up and lit and who lives in our neighborhood, but one day, I think it would be neat and would be something special we could do as a family. Maybe that opportunity will present itself here and maybe it won't but I see its value.

I believe strongly that parenting decisions (on non-essentials) need to be fluid an open to reevaluation as things change. But for now, we abstain from participating in Halloween.

Friday, October 17, 2014

Fun Project- Faux Fireplace

It's a girl thing. I've wanted a fireplace for as long as I've been an adult with my own dwelling.  I live in Arizona. You see the conundrum. Lots of people have them for decoration, but our house is old and modest and was built with necessities only, so no fireplace.

I like a warm fire but we rarely have need for one. What I actually wanted was the mantel so I could decorate it and switch it out for seasons. My husband thinks I'm nuts. He is also strongly opposed to the "Amish Fireplace" type of unit (I tried!).

I was admiring my friend's photo of her fireplace and mantel when the thought occurred to me that I could just hang a shelf and decorate it like a mantel. Duh. My original plan was to just buy a standard hanging shelf. But I began daydreaming and sketching and pinteresting and thought, hey, why stop at the fake mantel, when I could have a whole fake fireplace?

I was going to ask my brother to make me one but his schedule was full so on a whim, I searched Craigslist. I found a guy who makes them. He needed a website. So, we traded. He made me a fireplace, and I made him a website. He took my sketch and built it and installed it for me this week. I am so happy with it! Best of all, it didn't cost me any money, and he got something he needed, too! Win-win! And we gained a foot and a half of depth back in our living room and about a foot in length, too--big gains when the room is only about 12 feet deep and the wall it is on is only 8 feet long.

This is what we had before. The TV was on top of it too but I didn't think to take a "before" photo. It was pretty and sturdy but took up way too much space in our little living room.


Without further ado, here is my new "fireplace!"

 



All of the panels are actually doors that open so we didn't lose our media storage either.


And I just hung these letters last night--trying to decide if I like them. 






Thursday, October 9, 2014

Naming Your Graces

I follow a page that lists Christian e-books that are free and discounted. A book came across that list this morning called The Hardest Peace. The description intrigued me and the price was less than $4 so I bought it. That was before 6:00 this morning, when I was struggling with exhaustion and annoyance after having my sleep interrupted for the umpteenth night in a row by a determined little boy who has decided sleep is his mortal enemy.  I started reading and read until little boy got up "for real" and then again at his nap time, and again when he turned in to bed. I just finished the book, even whilst sleep-hating little boy is awake at nearly 10:00pm, snuggling with his daddy, as said super-man desperately tries to get him to wind down.

I read a blog from a missionary friend recently, who shared a sweet story of a package of paper dolls her family received in the mail and how that package reassured her little girl of God's love for her. The family are missionaries in a war-torn country and had to evacuate quickly, leaving all their belongings behind. The little girl missed her dolls, and the night after her grieving, a package showed up in their new country, with a new package of the same dolls. The box had been mailed weeks or months earlier, by a party who knew nothing of the abandoned dolls. The little recipient of the package declared how much she knew God loved her because he met a desire even like paper dolls. I remember reading the entry and thinking to myself, "I wish God loved me like that, too."

As I've walked through this years-long season of loss, I've doubted God's love for me. Not his global, eternal, saving, redeeming love. But his personal, individual, Jennifer love. The love that cared about my tears and and my longing and my dead babies and my son who wants a sibling of his own and my sweet husband who is such a good Daddy that he empirically SHOULD have more children. Doubting this love has made me hopeless, reclusive, and even a tad cynical.

The struggle of my life, and I think of any Christian's life, is to align your feelings and your heart with the Truth and with reason. I've recognized the magnitude of this charge so fiercely that most of the time I don't even acknowledge that these are my feelings because I know how desperately inaccurate they are. The God of the Universe loves me even when I don't feel like he does. I am so grateful that God is not capricious. He doesn't give or withhold His love based on if I think He's doing a good enough job of showing it or if I have earned it (I haven't! and never will!)  God declared His love in a great, big, Jesus way when He created this earth, when he created each of us, when He sent his Son to die for us, when He left His Word for us.  When I find myself doubting, I simply remind myself of these things in an effort to will my feelings into submission. It doesn't usually work, but I trust that God knows my heart and knows I'm trying to believe even in darkness. I know one day He will redeem even my feelings, too.

Back to the book. It's the writing of a young mom dying of cancer. You may have actually seen an article by her this week in response to the Oregon woman choosing to end her life on November 1 in response to her own cancer.

I don't think it's productive to compare pain. Each person's pain is tremendously impactful for that person. While it can be a useful exercise in perspective, it's also an easy way to discount the very legitimate suffering of another, even if the impetus of that suffering feels smaller than yours.  I appreciate that Kara never ever says, "I'm dying of cancer at age 36. Whatever problem you have has to be less, so suck it up!" She simply tells her story and the things she has learned while going through life's "Big Hards."

One of the things she shared that instructed me was naming her graces. I think I'm fairly responsive to thanking God for His blessings.  But the way that Kara referred to them as graces was challenging.  I think that it's easy to sort of subconsciously think that a lot of our blessings are deserved. If we eat right, drive safely, use our money wisely, shepherd our kids, remain faithful to our spouse, live frugally, love well, attend church, etc, it's easy to think, even ever so subconsciously, that we helped earn the blessings of health, family, friendship, church fellowship, a good marriage, financial security, etc. We can thank the One Who gave them to us and sort of mentally pat ourselves on the back for setting ourselves up for success and blessing. I think that's one reason we struggle so much when whatever challenge we're faced with is NOT a natural, logical outpouring of the circumstances preceding it.

But the very definition of grace is unmerited favor. Each and every single little thing, big or small, that is anything other than eternal damnation, is completely, wholly unmerited. I think I had forgotten that, without realizing it.

So I'm naming my graces. The big ones are easy to spot-my Jesus, my husband, my son, my children in Heaven, my family, my friends are all God's grace to me. A good marriage full of love to a good man full of love is God's grace to me. It is God's grace that He granted me my heart's desire to stay home with Matthew and be the kind of mom I want to be (or at least try to be her). We spent the day making pancakes and driving cars and reading books and talking, and feeding his love for tractors. It is God's grace to our family that 5 years into our business, we are still growing enough that we can support our family, and we have trustworthy, loyal, hardworking men of integrity on our staff whose families we can also help support. It is God's grace to us that while our roof continues to leak, we are still safe and the roofer continues to show up each time and try to fix it. It is God's grace to us that another couple chose us and that we have the opportunity for another transfer. If the purpose this time is to be another delivery to Heaven, that is God's grace, too. It's God's grace to me that today, Matthew craved touch so much that by the end of the day, I lovingly called him my little barnacle.  It is God's grace to us that Matthew gets to see his grandparents so often. It is God's grace to me that the first response of my best friend when finding out that our transfer is a week before her due date was, "Yay, we get to be pregnant together," showing me her faith FOR us even when I fear. It is God's grace to me that our family was just able to enjoy a modest but lovely vacation. It is God's grace to me that we have food in our bellies, a roof over our heads, clothes on our back, the medications we need, gas in our vehicles, and lots of wants, too. It is God's grace to me that I could read this book I needed to read today, even when not feeling well. It is God's grace to me that I have His Word available to me any time I want it. My education and my hobbies are His grace to me. Even this blog and the freedom to be honest are His grace to me. My warm coffee every morning, the rain that has drenched our valley, and the toy cars that litter my floor are all His graces. Matthew's giggles and my husband's loving glances and the nearby snores of my big fat dog are all God's graces to me. All of these things completely unmerited, unearned gifts.

Seeing these things as true GRACE, rather than "just" gifts, makes it easier to see and feel God's Jennifer love. Each and every little moment that makes my day more special is His Jennifer Lovesong. And today I believe a little more earnestly and heartfully than yesterday that if that song has another chorus of sorrow, it will still be a love song.

Wednesday, October 8, 2014

Countdown



We finally have a date for our final embryo transfer--November 20th. It's a little weird counting down to a day we know that will affect our lives forever--either we will finally be able to grow our family, or we will know for sure and for certain that we won't ever have any more kids. We'd appreciate your prayers. We really want to pray that the answer is yes, because we want more children very much and we are weary of heartache and loss. But we're trying to instead pray for God's glory and will, and for our acceptance of whatever the answer is. It's hard to have hope after so much loss, but we know that either the desires of our heart will be granted, or that if the Lord says no again, it will be because it is according to His much bigger plan. We are trying not to grieve as those without hope and we are grateful that no matter when we get to meet our babies, they are never outside of His Hands. We would love it if you joined us in prayer, too!

Monday, September 22, 2014

Bible School Week 1: A is for Adam and Animals

I mentioned in my last post that Matthew is not attending Preschool. He already has many of the academic skills they would teach him. And I try to expose him to opportunities to learn other things like cooperation, playing with other kids, obeying teachers, working in a group, etc, through other activities we do like playdates and classes.  I feel comfortable delaying his "formal" education until he is a little older, reinforcing and teaching things as he shows interest, but not forcing things or making "academic" time a formal part of our day. This isn't an indictment against preschool or school outside the home. I taught preschool and I think it can be great for a lot of kids. But I relish the opportunity to be home here with him and I can give him the same things, so we've chosen to skip it at this time. If we need to reevaluate, we will.

But I don't want to delay his Bible Education. We've always read to him from our Bible and his, but I want to be more formal about it.

So, we're starting on a little Bible School for him and me. I am going to try to use an ABC format. He knows his letters already, but I figured it gave me a good place to start so I could narrow down to a theme or topic. Having some sort of parameter is good for me so I'm not overwhelmed by my choices. And it can't hurt to reinforce the alphabet. A actually came pretty easily to me but if I start flushing it out and it doesn't work well within the alphabet rubric, we'll abandon it.

I love Children's storybook Bibles. We have 8 or 10 of them. So most of what I will be using is just readings from them. I'm not really using any curriculum. I'm just sort of developing it myself.

My plan is to read the scripture every day, and then read one of his story book Bibles. Throughout the week we'll read other story books we have that reinforce the topic. We'll have a Bible verse to memorize.  I am toying with the idea of adding a Bible person of the week, and a place of the week too, but I haven't decided. This week the person goes with the lesson and they both start with A, but next week I am going to do B is for Bodies. God made Boaz' body, but it doesn't really reinforce the lesson. So we'll see. Same thing with songs. When we want to color, we'll color something that corresponds.

This fits well for my and Matthew's personalities. He really really loves to read and sing so he will think these things are fun to do, without feeling like it's crunching on his "play" time, which is what I want him to spend a lot of his time doing.

So without further ado, this is our game plan for the week.

A is for Adam and Animals
God Created the World

Scripture: Genesis 1:1-31

Monday: Toddler Bible, pages 12-19
Tuesday: New Bible in Pictures, pages 14-18
Wednesday: Jesus Story Book Bible, pages 18-27
Thursday: Jesus Calling Bible Storybook, pages 16-23
Friday: Big Picture Storybook Bible, pages 16-32

Person: Adam

Memory Verse: "All things were made by Him" John 1:3

Song: "All Creatures of our God and King"

Books: Creation Story, All Things Bright and Beautiful





These are other letters I have noodled on so far. In some I have multiple ideas, on others I don't have one yet. In some, I may just spend multiple weeks on the same letter so we can go through each one.  I may also do a theme one week, and a person the next week. Who knows. That's the nice thing about this--we can do as much or as little as we want, at any pace we want!

B: Body, Bible

C: God takes Care of us, Christmas

D: Disciples, Discipline

E: God made everything, God gives us everything.

F: Forgiveness, Family, Friends, Food, Fear

G: God is good, Good news of the Gospel

H: Heaven

I:

J: Jesus

K: Be Kind

L: God is Love, God Loves Us, God Listens

M: God made Me

N:

O: God wants us to Obey

P: Be Patient, Praise God, Pray to God

Q:

R:

S: Sin

T: Be thankful

U:

V:

W: God gave us work to do, God made the world (focusing on other places rather than creation), God made us to Worship Him

X:

Y:

Z:


ABC People in the Bible:

A: Adam, Abraham
B: Boaz, Barnabas
C: Caleb
D: Daniel
E: Esther, Eve
F:
G: God, Gideon
H: Hezekiah, Hannah
J: Jesus, John, John the Baptist, Joseph, Joshua
K: King David
L: Lazarus
M: Mary, Matthew, Mark
N: Nathaniel
O: Obadiah
P: Paul, Peter
Q: Quirinius
R: Ruth, Rachel, Rebekah, Rahab
S: Sara, Simeon, Samuel, Satan
T: Timothy
U: Uzziah
V: Vashti
W: Wise Men
X: Xerxes
Y:
Z: Zachariah, Zaccheus


So, homeschooling mamas and mamas of preschoolers, what do you think? Would love your tips and tricks.

Tuesday, September 16, 2014

Work and MOPs and Peers and Grief and Loss and Hope and...

Hi Bloggyland!

I hope this finds you well.

Life has been a crazy whirlwind the last many months.

5 years ago, my husband started a little auto repair business wherein he was repairing cars for the dealership that used to employ him as Controller. It was a one car at a time operation and the overhead was low because he used space at their dealership or here in our driveway. Eventually that business grew and he borrowed some space from the dealership's other location.

2 and a half years ago, the opportunity to move into a proper shop presented itself. For a long time, it was just him. And then it was him and one other guy.  Over the last 2.5 years, business exploded. We transitioned our model from repairing cars for other auto businesses (wholesale services) to focusing primarily on retail customers (individual vehicle owners). God has been amazing at providing work and customers for us. What was fledgling 5 years ago, is growing rapidly. We have a team of 6 employees (including DH and I) and we've grown 48% over last year, and almost 400% since we started. God is gracious and generous. We're now a full-service collision repair shop in our metro area.

What that means for me and this little blog though is that I really had to step up the role I played in the business. When we were all wholesale, I did almost nothing, except for the occasional ordering of office supplies or something. DH prefers to keep the books to exercise his Accounting Brain (I say no thanks anyway!), and between two auto businesses, there wasn't much I could do. Wooing retail customers is a whole different ballgame however and is massively time consuming. 4 employees and turning dozens of cars a week require a lot more systems too than one car and one guy at a time. Those are the areas I am more gifted in doing than DH is. So for most of the spring and summer, I worked whenever Matthew was sleeping, so I would work from about 6:30 am to 8:00am, between 2:00pm and 5:00pm while he napped, and from about 10:00pm to 1:00 or 2:00 am after Todd and Matthew went to sleep. It was exhausting. I honestly don't know how women who have to keep that pace all the time sustain it. You're amazing.

Thankfully, I don't have to pour quite so much time into it now, and so I can be a little more balanced though I still do work a lot.

When Matthew is awake, I try to give him as much of my attention as I can. We did a lot of classes at the Rec center over the summer-gymnastics and tumbling and dance. He loved them all. We do have to go into work sometimes and he enjoys going.

Now that I can breathe again, I hope to blog some more.

I went to my first MOPS group today. It was...interesting. I'm an extrovert. I have never felt uncomfortable walking into a room and making new friends. However, I can honestly say that the last time I had to walk into a group of strangers whom I was going to know for longer than a couple of hours was more than 10 years ago when I walked into what is now my church. I am such a different person than I was 10 years ago. 10 years ago I wasn't full of grief and loss and feelings of inadequacy and confusion.

My church is multi-generational. There are less than 5 families who are under 40. Most of my friends are in their late 40s or older. And I like it that way. For one, I'm an old soul anyway. Always have been and I just gravitate to them. So in the last 10 years, I haven't missed having the majority of my friends be my own age (ish). I do have girlfriends my own age, but all of them are from before any of us had kids, most of them are friends I met through infertility because they struggled too, and the number of non-peer friends I have still outnumber them.

So as this morning's meeting approached, I was nervous in a way I couldn't really understand. I'd never been nervous to go to a new group before.

It wasn't until I got there and they told me to make a name tag and tie little bows on it that I got it. Blue bows for boys, pink bows for girls, and white bows for children in Heaven. I almost walked out right then. How do you put 13 white ribbons on your name tag and not feel utterly absurd? The situation IS utterly absurd. I took 6 because it's what I thought I could take of what they had left and still leave some for other people. Gladly for them, not many people needed those white ribbons. I could have taken as many as I needed. So, from the get go, I was forced to deal with stuff I wasn't prepared to deal with today. Broadcast "hey, I'm the weirdo with 13 dead children" to a bunch of women whose necklaces were full of pink and blue. Let me tell you, it's not on anyone's list of conversation starters.

And that's when I realized how overwhelmingly uncomfortable I was in a group full of moms of young kids. When I'm with my friends whose kids are grown, the reminder of what I have lost and what I want so badly isn't staring me in the face all the time. I'm not constantly reminded of how different I am.  I don't feel threatened or sad because I'm watching their kids play happily together while Matthew is alone. I don't feel like I'm going to get left behind or passed up.  I don't feel like they might think I'm silly if I'm tired or overwhelmed with my one while they're juggling their 2 or 3 or 4. Conversations about how easily they get pregnant or when they might have another one or if they're pregnant now just don't happen. Give me menopause talk any day! I mean no disrespect to my friends who are my peers and I am so grateful for them too. I don't consciously feel uncomfortable with them in one on one situations. But walking into a whole room full was overwhelming.

We played some mindless games and I thought I was ok. They showed some fluffy rah rah rah video and I thought "piece of cake." They asked some fairly benign questions and, trying to participate some, when it came to my turn, I started to answer.

And the floodgates just opened. Here I was, in a room full of strangers, sobbing. Did I mention I make a great first impression? (sarcasm!) How do I honor my kids, honor the other women there, respect the testimony God has given me, be responsible with grief and feelings, and do anything productive with the time?

I just had no idea how difficult it would be to go and be with a bunch of "normal" moms. I just felt so inadequate and unable to relate, and sure that no one would understand me. 2 mamas at the table were jiggling infants. All but one had multiple kids. One woman had one loss.  I hear everyone talking about how they just want a break and want some identity outside of being a mom. I just don't resonate with that. I know that "all" I am is a mom right now, and I LIKE that. I don't find myself wishing for more. More sleep maybe, but I don't really identify with those feelings that most other moms share. Maybe it's because I feel like it's already slipping away from me. 7 years of agonizingly slow waiting have given way to blink-of-an-eye time that I wish I could freeze.  I feel a sort of panic about that pretty regularly. Like I'm clawing at the recent past and trying to stop time. I have a lot of growing to do in that area. God is the God of my past and of my future, but He's also the God of my now, and Matthew's now, and I want to be present with Him and him here.

I had no idea any of these things subconsciously bothered or hindered me. And the peer friends I do have are great so I'm not even sure where these thoughts came from because they're not really grounded in actual experiences.

The devil is crafty and brilliant. Never underestimate him and his ability to manipulate, lie, surprise, and steal. I am grateful that none of these things are a surprise to God and that He is big enough to handle my emotions.

We're supposed to transfer one final time sometime this fall and I find myself afraid, and even unwilling to hope. I was just resigned to another loss. This morning God reminded me though that we do not grieve as those who have no hope. That verse is usually used in context of the hope of Heaven. But my testimony is small if I can't believe God is big enough for Hope. So I'm trying to hope. I'm praying for hope. I don't have it yet, but I want it and I know by His grace, we'll get there. And if I'm crushed again, Selah.

Matthew continues to be amazing. God has given him a heart that wants to know and love the Lord. He astounds me with the things he says and does and thinks.

I intend to homeschool him for now. I don't think kids his age need formal education so right now any class we take is because it gives us access to people or resources for play that we don't have in our regular life. Plus, I used to be a preschool teacher so it seems sort of silly to send him to school for what I can give him. All of his learning is through exploration and play. We go to the zoo and museums and the library and other kid-friendly places like that. He's environmentally exposed to "concrete" things. He knows his upper and lower case letters by sight and sound, his numbers 1-20, his shapes, his colors, his address, his pronouns, his verb and noun tenses, most of his opposites, and many superlatives and spacial/size/measurement relations. This weekend he surprised me by deducing that 3 minus 1 is 2. So I think our system is working for us :) He's tall enough and verbal enough that a lot of people ask him if he's in school yet. I always feel a little bit bashful about saying no, and he's not going to be. I keep trying to remind myself that if it's not broke, don't fix it. This seems to work for our family and his learning style and personality. If we ever need to change it, we will.

He has a list of chores that are his and he generally does them happily. I really am so blessed to be his mom.

Right now, the love of his life is wheels. If you don't have wheels on you, he's either ignoring you or pretending you have wheels, or pretending that HE has wheels. Vehicles of every kind tickle his fancy. His imaginary friends are vehicles, too. He loves them all. The only things he loves as much as vehicles are books. He will sit and "read" for hours if you let him.

He's also 3.5 and all of stubborn and disobedient and noisy that comes with it. It's not all sunshine and roses, but I try to focus on the times that are. Because he might one day read this, I don't want to showcase his flaws for everyone to see, but suffice it to say, he has them. Sometimes I call him my little sinner. Hopefully one day, saved by grace.

Well, hubby is waiting for me to detox with him a bit before bed, so I'll leave you with this. Here's my little guy, taken just recently!



Goodnight, friends!