Noah -Diagnosis!

Well, after 7 and a half years of life with our little guy Noah, we finally have some answers. We were finally getting to a point where we figured we would never really have an answer as to what has caused Noah's delays, but we got an actual diagnosis!!!

We have always loved our special little boy, and would not change him for anything, but always knew something was a little bit "not right." I don't like to say "wrong" because I know he was made in the image of Christ, and was made exactly how God intended. Either way, Noah is far behind in development in comparison to his peers.

Josh and I have been pretty active over the past 6 months in trying to get Noah more help. He ended up out-growing his Early Childhood Developmentally Delayed label when he turned 7. The school district gave his an LD label which is generic for Learning Disability. This is a great label, if that's really what you have. Not so much for Noah. So, for the past 6 months his doctors (and nurses) have been fantastic at making sure we've covered all our bases.

One test that was never performed on Noah was a chromosomal array analysis. This didn't happen for two reasons. Number one being that he doesn't fit into any well-known certain condition like Down's Syndrome or Trisomy 18. Each of these are identified on this test. Reason number 2 was that the test is very expensive, and without having a strong reason to perform this test, insurance will not cover it.

We finally got approval mid-summer to get the testing done. It came back abnormal. The doctor was extremely surprised. So, they sent in Josh and me to have the testing done too. All of the blood was sent to Mayo Clinic where the test is performed. We found out that neither Josh nor I have this abnormality.

So, after years of wondering, our hearts hurting, wondering if it was something we could have done or prevented, we have our answer.

Noah has a chromosomal abnormality. He has a deletion on Chromosome 8. Every one of the cells in his body has this deletion it it. There is no official name for it, it is not common enough to "warrant" a name. We have heard numerous different numbers but hear that is extremely rare. The geneticist we are working with has never encountered it. We have found 7 parents worldwide with a similar deletion. All this really means is that it is not surprising why it took so long to figure out what exactly was going on with Noah.

Having this sort of diagnosis will eventually accomplish what we wanted in the first place- more help for Noah. He will qualify for numerous different programs, summer therapy, and will allow for him to have a label at school that is more appropriate. All this just takes time, to work through all the "red tape."

So, after all these years, we know that it was not the medication I was on, his difficult birth, or anything of that nature. We finally have an answer.

If you're interested in what a Chromosome 8 deletion looks like you can check out this website.

http://www.peacehealth.org/KBASE/nord/nord1032.htm

Noah

So the Noahmeister has decided that sleep is no longer his friend. Not that he has been a great sleeper over the past couple of years, but who can blame the kid after all the crap the poor boy has gone through?

So, now that his life is stable, I think it's time for a normal sleep schedule. This means at least 8 hours of uninterrupted sleep.

Is this too much to ask?

From Noah, yes.

Night before last he thought 1 a.m. was the perfect time to wake up for the day. I kept thinking he would eventually fall back asleep, but, alas, no. And with Noah, if he's not sleeping, neither is the momma.

So, we're working on a few ideas to help his "sleep hygiene." I know some of his sleep issues are learned behavior, but we know some of them are neurological. So, we are totally clueless how to help him. Do we just buckle down and get really strict or are we dealing with brain issues. Hmm...

pondering...

if you would, we would really appreciate your prayers for our sweet little boy. :-)

Snuggling

I'm all snuggled up in the hotel room, the smell of the down blankets and pillows. The A/C is on full blast. I love it.

Josh is alwaaaaaays cold. I, on the other hand, am NOT.

Today, I control the thermostat.

Gonna order room service and not leave the room until tomorrow. Aaaaah (contented sigh)...

Nights away

My hubby sent me away. I love him for it. There is something about getting away for a night or two that just refreshes this momma's soul. After a crazy three weeks (see the previous post from yesterday), I needed a break. Josh's dad came for a visit and to help with the two older kids, and my mom and sister got in on the fun with Ephram. So, I'm sitting here, doing a bunch of nothing and loving it. And will continue to do it until lunch on Friday. Yaaaay!!!!

Life got hectic for a while. Thankfully it seems like we are getting back to normal...which is still hectic, but "predictable hectic."

Ephram got his first set of stitches on Sunday. He was playing in the top bunk with his sister and cousin and all of a sudden, I hear one of the girls screaming, "He's bleeding!" but in a panicky sort of way. I was being the non-supervising mom that I am and helping Josh in the bedroom when I heard the ruckus. Thankfully, Ephram calmed down pretty quickly and we headed out to the ER.

I was disappointed to have to miss church AGAIN, after having missed the last three weeks in a row with Josh being sick. Which is where the real stress was.

Josh went in to have a baclofen pump installed (a little metal hockey puck looking thingie that is in his abdomen and pumps the drug into his spinal column). We were supposed to be there all of about 24 hours. We figured we would be back up and running in the next few days. Wrong.

Josh got a spinal fluid leak, which in itself, is really not a huge deal. The problem was, no matter what we tried, we couldn't get the stinkin' thing to stop leaking. Josh ended up spending two weeks, with horrible headaches, lots of puking, and lots of laying flat on his back. Frustrating, but I knew he wasn't dying.

It was hard for Noah, who thought daddy was back at Mary Free Bed for the long haul like last time (three months) no matter how I tried to explain to him that daddy was just going to be gone a few days.

All in all, Josh was down for about 2 weeks and is now doing waaaay better.

We are now back to working on our new ministry that God has laid on our hearts called Real Time Church. We are excited to see where God is leading this. It's also nice to have this sense of peace, knowing we are doing exactly what the Lord is asking of us.

Loss

Loss seems to be everywhere.

Not the kind of loss like I lost my keys.

Loss like I am ready for heaven.

People all around me are suffering. In the past 5 days, two different families have come to my attention after losing babies. Both of them were about 6 months old. Loss. Why?

I talk with my girlfriend who is dealing with her daughter having a brain tumor. Loss.

Children losing their childhood. Brothers and sisters losing their innocence.

With all this pain in this world, why do I cling to a God who could heal and yet doesn't? Or does he, just not like we ask?

When I feel like there are no answers for these questions, I think of what my life would be like without my faith and trust in God.

Ugly.

There is so little that one person can do for another. So, I do the one thing I can. PRAY!

Pray that the God of all Comfort will guard these families minds and hearts and use these circumstances to grow closer to Him. To the truth that sets us free.

Praying

I've been doing a lot of praying lately. For one specific thing. During my quiet time this morning, I was reading about answered prayer. It got me thinking.

What happens if God chooses not to answer the way I want Him to? I know He will answer. I just may not like his answer. It causes me to ask some questions that I am not sure I want the answer to.

There have been numerous times in my life where I prayed and the answer was no. I remember while doing CPR on Ava, crying out to God to save her, knowing HE could, but he chose not to. I remember after Josh got hurt, praying for God to heal him, yet again, he chose not to.

Why would I choose to follow a Lord who allows me so much pain? Why is there so much pain we have to suffer? Why does God choose to heal some and not others? So many questions that will probably not be answered on this side of heaven.

Then I remember. How would I have ever made it through the trials in life without him? HE was the one who sustained me through my grief. He was the one who stood by me when no one else knew what to say. He was the one who carried me through when I thought I could not take another breath.

So, what happens if God's answer is "no" to my ever pleading request?

I know God will still be God. I will not question his sovereignty. He has proved that to me time and again. I will continue to question pain. Why he chooses to heal some and not others. If praying for healing will change God's mind or if it is more for me.

All I know is that if I continue to seek God, and not rely on the things of this world, I will continue to be sustained by my Father, the one who created the Earth, the one who created me, the one who cares about me, the one who cares about my heart.

So, Josh finally refigured the blog so that we could have a comment section. He was highly irritated with it, but it's finally fixed!

Life has been going on like a real summer vacation. We have enjoyed days at the park, the lake, sprinklers on trampolines, and all kinds of summer fun. It has been gorgeous so we have been taking advantage of the weather.

Having this weather makes Josh want to move somewhere warm. His idea of warm is my idea of HOT! He is so often cold that having some warm weather is a welcome reprieve for him. Before his accident, he was always the hot one but now our roles have switched. Now, I am the one begging to turn on the a/c and he is the one saying "it's fine in here!"

It would not surprise me if we decided to eventually move to a warmer climate. We've heard from numerous different families who have moved to warmer climates after being injured. If that did happen, it's a few years in the making. We'll see where God leads us.

Josh has been spending a lot of time with his new website that he is about to open up. We are both passionate about helping people in times of crisis, so this is where God led. We are excited to see what God has in store.

It is our greatest desire to be a light for Christ. This desire often gets lost in the busyness of life, sin, or just our own selfish desires. We have been praying for God to make us more like his Son, but that change is hard. Our faults are obvious, our sins easy for all to see. We pray that God is going to use our ugliness for his kingdom.

We continue to cherish our time as a family. I am thankful for the gifts we have been given over the past few months. God has been ever present, even when things are/were difficult. When we felt like everything was falling apart, He gave us more of Himself. We continue to pursue him with abandon, being thankful that we are enjoying the journey.

4 Years

Saturday was a hard day for us. Ava went to heaven four years ago, August 1st.
We miss her. Lots.

We spent the day with my parents and sister and her family. We went to the graveyard, let balloons go, and made a craft to leave at her headstone. We ate lunch together and watched the kids play at my parents house. It was eerily similar to what we did the first 2 months after Ava died.

We would sit on the driveway in front of my parents house, watching (or hovering) while the kids would play. We would talk and cry. A lot.
So, this is what we did again. And it felt good. Good to remember, to reminisce, to even take the time to talk about what we remember that day.

It felt good to just have an Ava Day.

Noah

Noah has really been struggling lately. It hurts this momma's heart to see him like this.

Noah was born on June 22, 2002. He was our little surprise and we were so excited to be starting a family. I was being medicated for a seizure disorder so we knew that the medication could cause problems (mainly spina bifida). So when he was born with no apparent issues, we were overjoyed! Noah spent 4 days in the NICU after being vacuum-extracted and having quite a bruise on his head. It caused issues with his oxygen saturation and all kinds of other smaller issues. We brought him home thinking his problems were over. He began crying, refusing to eat, and just generally unhappy at about a week old. Generally unhappy does not describe the screaming we heard over the next many months. He was very late reaching milestones and we were already having him tested at 8 months of age.

All to say, we have always known Noah was different. We love him that way. It's just who he is.

But our struggle to keep Noah safe is another issue all together. The kid is crazy. No, for real. He has absolutely no concept of danger. He jumped out of our second story night before last. He knew he was in trouble for leaving his bedroom but we could NOT get him to understand that the real problem was the danger. Yesterday, he somehow managed to get the garage door to come off the track and come down at break-neck speed. Thankfully, no one was under it. A few weeks ago, he started a fire in my parents trailer in the garbage can. These are just a few examples of what we have been dealing with.

We are not dealing with a little boy who is devious or defiant. We are dealing with a little boy who seems to lack the decision making skills to make good decisions. We talked to his behavioral pediatrician at length yesterday and we feel like we may finally be getting somewhere. He believes Noah has a neurologic impairment, possibly in his frontal lobe, where decision-making lies. It seems like the doctors are finally starting to understand that we need help.

Noah needs constant supervision, "don't let the kid out of your sight" constant supervision. The things he manages to do is usually when he is alone for just a minute or two. When in his bedroom, we have installed a lock so that we know he cannot get out (so he goes out the window instead).

So, the race is back on to find help. Noah needs some form of a "label" to get the help he needs from the schools and the doctors. We are waiting for results for a metabolic disorder that causes neruologic impairment, but it had to be sent to Mayo Clinic so the wait is one to two weeks.

Any form of a label will not change who our sweet little boy is. For all of his craziness, he is nothing but sweet. He endears himself to almost all he meets. He is full of joy and laughter, pure innocence. Our greatest desire for Noah is for him to love the Lord and to be happy. If these two things hold true, we will consider it success. Greatest success.

Home

Home from church camp. Looking forward to climbing into bed with my hubby. Saw lots of old friends. Renewed a few. Made lots of memories.

My feet are clean...finally.

It's finally here!

So, I've been working with Josh on this for a loooong time. This blog has become more of my sounding board than anything he works with, so I didn't like the old domain name.

We have spent the last few months playing around with different looks and this is what we settled on. I'm excited for you to be able to see new pics of the family because I may actually be able to post them. The other site was NOT so user-friendly (at least to someone not too computer savvy).

Back to the usual stuff.

Prayer requests continue with Kate and you can keep checking it at the caringbridge site. This has been so heavy on my heart the last few weeks. People all over the country are praying for Kate and it has been a such a testament of God's faithfulness during suffering. Times are hard for the family right now and we need to be on our knees for them.

I remember the "before and after" mode that was mentioned in the latest update and it made me feel a little sick. I recall looking at the dates in magazines, newspapers, TV, etc. looking at every date before August 1st, 2005; that was the old me. Before.

Then came August 1st and everything after this was the After mode.

I don't quite live like this anymore. It shows me that life goes on. New memories are made and the old ones sweeten with time. I don't think about the horror of that day as much as just about my little girl, Ava, who was only with us for a few short months.

I remember feeling that those feelings of desperation were never going to pass. They did and now I kind of miss them at times. It always makes her seem closer.

After Josh got hurt, I remember thinking our life was never going to be the same. In many ways, it's not. But in most ways, it is. He's still the same guy. I'm still the same girl. We still like each other and drive each other crazy.

After being with Phoenix I was struck with one thing: that watching Josh suffer is not like watching your child suffer. Yes, it was heart-wrenching to watch Josh go through his accident, but there is something about the innocence of a child. Knowing that there is no way to explain to a five year old why they have to go through the suffering you are intentionally putting them through, knowing it's for their good.

Most children trust their parents. Seeing the look in Kate's eyes when she questions Holly was hard for ME to watch, I can't imagine the pain Holly was in. It made me realize that the heartbreak Holly is experiencing is so different when it's your child. I pray that God would sustain Holly and give Kate peace.

One last thing, Noah is back into the testing grind. Still looking for a diagnosis so that he can get the help he needs. He went to two specialists last week and they decided to retest him completely. Looking again at the autism spectrum. At this point, we really don't care what they "label" him, it doesn't change who our sweet little Noah is.

We are talking to the doctor again tomorrow about some specific concerns and the possibility of a metabolic disorder that caused his problems. Not sure who they will send us to next. I know, in comparison to what Holly is going through, this is just small potatoes. But my heart aches for my son. I want him to love life, be accepted by his peers, love the Lord. I have come to realize that so much of my desires for him do not really matter as long as he understands there is a God who died on the cross for him and he chooses to follow him. That's all that really matters.

p.s.

The comments are broken. :(

If you want to leave a comment, do so at my facebook page...

Comments not working yet :(

(Josh posting)

Shelly is at Camp in Hastings this week. She doesn't have Internet access so she probably doesn't realize about the comment section on the blog isn't working. I'm the one who did all the layout... so don't tell her. Maybe I can fix it before she gets back. He he he he.

If you want to leave a comment, do it at her facebook page...

Phoenix

I am in Phoenix, attempting to support Holly and family while their life seemingly falls apart. There are so many unknowns right now and all we can do is pray. We are crying out to God for mercy, to heal little Kate. The doctors have not been extremely encouraging and Holly has been in desperation mode many times over the last two days. Please pray for peace for the whole family. Pray that Kate is not scared. Pray that the doctors are wise in their decision making and that God's hand is used in the surgery.

Kate will be having brain surgery on Friday to take out the portion of the tumor that is reachable. The doctors have been clear that it is not completely operable. The risk to take out the entire tumor is too great. At this point, they are not sure of the type of cancer they are dealing with, only that it is aggressive and fast-growing.

Please be praying that the doctors are able to determine exactly what to take out during the surgery. The doctor did say that once in a while, they go in and the tumor "peals away nicely" from the vessels and is able to be dissected completely. This is our earnest prayer. We know God is able to heal Kate without the use of doctors, but we know He is also able to heal her using other means. We pray for a divine healing- for little Katie's life to be spared.

You can find her updates at www.caringbridge.org/visit/mcraekate Sorry, you may need to cut and paste cuz this momma is not too computer savvy! :-)

Love you, all my faithful prayer warriors. It's time to rally around another family this time. Please keep them close to your heart.

PRAY!!!!

I have talked, over the years, about my best friend Holly. She and her husband are out in Phoenix planting a church and are desperately in love with the Lord. She called about an hour ago. Her 5 and a half year old daughter Kate is in the ICU with a brain tumor they just found a few hours ago. Please be praying. Pray for peace, God's will, and healing. We know our God is able and we pray for this to be His will!!!!! We'll keep you updated!

Today

So I know i was talking about posting every day but I have Josh on a mission. He is moving every blog entry, since Ava's home-going, to one central blog. We have been busy doing this. :-)

I went out with a few friends for a while tonight. It was nice to spend time with girlies and enjoy sharing "mothering" stories and where we are. Each one of us has our own struggles, our own issues. Josh was at home with a few boys enjoying his time also.

Look for our new space in the next few days...

The Lord is putting a call on my heart about where He is calling us to go. Kinda' scares me, kinda excites me. Please be in prayer. Right now, I feel my job is to pursue my relationship with him and just go after Him with all my heart.


*today I let Noah make the mac and cheese from start to finish. The mess was incredible, the noodles were undercooked, but he was sooo proud of himself. He needed a major bath after the debacle, but he was one happy boy!

Germ Armies

My house is full of germs. Germs everywhere. I should invest in some more Lysol and try to get rid this virus. Josh has been running a fever since Friday (he seems on the upswing) and now Noah has it. 

Noah is one of the most hyper boys you will ever meet. He finds trouble- EVERYWHERE. When I was in NYC last weekend, he nearly ran himself over with my dad's truck. He was unsupervised for a total of about 30 seconds (according to the adults present) and still managed to get into this much trouble. So, when this little boy is as quiet as he is today, you know he's sick. He just wanders around, waiting, I'm not sure for what. Josh let know use the electric leaf blower which would normally make his day, but he only wanted to do it for about 2 minutes and then was done. Makes me feel bad for the little booger. He's sleeping next to me on the floor right now so I don't have to worry about his fever getting out of control.

God's been teaching me some new stuff that I am looking forward to sharing but just don't have anything solid in my mind to say. Hope all you friends are well.

Nighty-night.

Sharing

I guess I shared my sickness with Josh. It is 8:30 and all the kids are asleep and Josh and I are in bed. Weird. Kinda nice. I do love my sleep. 

I left Josh home for the day for some quiet time and took the kids to my parents to do some swimming. We love hanging out there. The kids have all kinds of open space and do not need as close of watching. My parents live quite a ways back in the woods and the kids love to run all over. My mom and I sat around the pool and drank Diet Coke and the kids swam in the pool. Actually, Ephram "swam" in the tub we use to rinse off our feet. He was too scared to go in the pool.  He was also scared of the bonfire we made to roast hot dogs. He's mommy's little scaredy cat. 

Quadriplegia and vomiting do not go well together. Need I say more???

Please pray for the sick boy. He is pretty miserable. I pray that he wakes up in the morning feeling better.

That's all for tonight. This momma's turning in early...

joy

Today I played the game "Perfection" with Noah. Does anyone remember that game? The babysitter picked it up at a garage sale last summer. It is so old-school. No batteries required. Love it!!! Anyway, Noah loves this game I figure it's good for his fine motor skills as he is lacking in this area. So we played Perfection HIS way. What you do is push down the tray, put in all the pieces (get really mad that one of the pieces is missing) and then turn the timer to 60 and wait. Then watch the pieces scatter. Wow. Fun game Noah. :-)

The weather here has been a bit on the bleak side. We went outside to jump on the trampoline for about 15 minutes and the kids got soaked. They were beginning to drive us a little mad so we decided to pull the cars out of the garage and let them run around. Most fun the little munchkins have had in a long time and this mommy got a little peace and quiet!

sick

Why do mom's have to get sick??? Doesn't the Lord know I don't have time for this? :-) Josh is pulling daddy duty with movie night tonight and I'm heading to bed early. Throwing up is not a classy act. Oh well.

Today I let Noah mow the grass with me, even though I could only go half as fast. I just wanted to get it over with. But if you know Noah, you know the boy is obsessed with tractors. So, I let him "help" me for a little while to get his fill. When he got off he says, "Aren't you going to say thank-you mommy?" Like he was my big helper...hah hah. Thought that was cute.

9th

Today is our 9th anniversary.  All of our family forgot. Anniversaries are a pretty big deal around here. You can imagine the horror when my mom called about a half-hour ago, spitting apologies. The only reason she remembered is she got a reminder call from my sister. I had to tell my sister tonight. Josh told my brother-in-law. It actually makes me smile. 
It was a pretty big one for us. Life has changed a lot in the last nine years. I'm happy with the choice I made when I decided to devote my life to this man who lays beside me. Life has thrown us a few curve balls but we're in this together.

Today I held up Ephram by the sink and let him play in the water for about five minutes. Even though I knew what a mess it would make...his little squeals made it all worth it.

>>> why the blog changes? <

Many of you have been following this blog for a while. We had a major format change about a year and a half ago. So many of you might ask, "why change it again???"

Two reasons.

One, the new blog is a bit more visual. You have to admit that same old palm tree was getting kind of lame.

Two, more importantly, the new blog is easier for me to update and to add content to. I need some serious help in this area.

The basic problem so far is that we have lost thousands of comments. Josh has not given up on trying to find them in cyber space... but we will see. I'm not making any promises.

Anyway, hope you like it. Yippee!

finding my joy

I know my true joy comes from God but this is an area I struggle with.  I think laid back people are generally more joyful than intense people. I know I am intense. I am reminded of it every day, many times over (usually by myself as in I drive myselfcrazy). 
So, I read a lot of blogs. There are so many women who have it all together. They wake up and their house is neat and breakfast is not a crazy struggle. They love cuddling with their kids and taking walks. They love baking cookies together and picking flowers. Don't get me wrong. I do enjoy doing these things. I just have to work at it. 
When I wake up, it is usually to chaos. Noah needs his meds, Josh's nurse is coming in the door, Ephram has wet through his sheets for the third time this week, and Zoe is starving. Making eggs sounds like too much work because then I will have to clean a dirty pan. Who wants Cinnamon Toast Crunch? Healthy, I know. I have learned to make eggs in the microwave. I am the queen of microwave pancakes. 

So, am I am normal? Why do I have to work at it? Why am I not just a bit more "chill," a little more "Urban Outfitters" which is a whole nother story all together.

One of my girlfriends sent me a Facebook request to join a page to "bring Urban Outfitters to Grand Rapids." I didn't really pay attention, just thought, hmmmm, I've never shopped there. Fast forward a few days. I was in NYC this weekend visiting my cousin and we went into Urban Outfitters. To say I was out of place was the understatement of the century. I told Josh that if I tried to wear their clothes it would all be a complete "hoax." Just me trying to look a bit more indie, chill, a lot more not me. 

I'm more of a Gap, Old Navy, Banana Republic clearance section type of girl. 
So, back to my joy. I want to find joy in the small things. I want to enjoy my kids while they are small and not wish the time away because life is hectic. So, I have decided to do something about it. Every day, I'm going to do one thing that I would normally NOT do because I'm cleaning, doing dishes, talking on the phone, checking my e-mail...you get the picture. Just busy. I've been doing this lately. But now I'm going to update one time a day. It's going to force me to get back to blogging. 

No, I'm not organic eating mom, not patchouli wearing, just a typical middle-class mom who feeds her kids Spaghettios for lunch and yells at them to get back in bed for the eighth time tonight. I yell at my husband, and I'm not always nice. 

But guess what? Jesus loves me all the same. It is my responsibility to be the woman He calls me to be. He gave me this personality (neurotic as it is) and I'm going to be more proactive about finding my joy.

Today I had a tea party with Noah and Zoe and we had real tea. We got out all the fixins and even had cookies. Wow. Supermom. (that's a bit of sarcasm for you...)

* finding my joy

We all have struggles, and one of mine is struggling to unplug enough to have a tea party with my kids or to go for a walk when I know I should be preparing dinner. I'm always looking for the next project that needs to be completed and looking for the next few minutes of down time. The problem is, doing these type of things, being a bit more chill, is one of my desires.From now on every time I do something that is against my own nature but is in pursuit of trying to find my joy, I will tell you what I did at the end of that day's post and I will highlight it by putting this cute little bar here...You'll probably be surprised with how little and inconsequential these things are. I'm just a real mom who does not want to wish away the hard things and miss the joys of my young children. Every day, I make a consious effort to do one thing that I would not normally do because it is too messy, long-winded, or just what I don't want to do. I want my kids to grow up to remember a mom who loved them and experienced life with them.

marriage

"Complacency and indifference leads to unhappiness."  

This is not some well known little saying, just something that kept banging around in my head last night while I couldn't sleep. I was laying in bed next to Josh, being thankful for where we are at. 

When Ava died and we made it through that whole ordeal with our marriage intact, I thought we were indestructible. Maybe not indestructible but definitely not struggling. So, when Josh broke his neck, I remember leaning over his hospital bed, trying to talk to him while it was turning his body back and forth, and telling him, "We are going to make it!" I didn't really doubt this.

Until 6 months ago.  

So, after Josh got hurt, we were going on adrenaline for a long time. It seemed like we got closer at first. Then, once he got home and we were trying to establish a new normal, reality set in. It was ugly. I am naturally a very selfish person. I want what's best for me. I want what's easiest for me. So, when he needed me, I instead turned inward. I became somewhat indifferent to the struggle he was going through because I could barely cope with mine. When we were doing "okay," I thought that was good enough. 

It's not. 

It led to a wretched life that I could barely recognize as my own. One where my needs came before Josh's. Josh's needs came before mine. One where we were going completely separate ways. And six months ago, I was okay with that.

It seemed way easier. 

Except, that's not what God had planned for us.

I'm not sure when we thought it was okay to stop praying together or spending time in the Bible together. I don't know if I thought we could do this on our own, but I know we can't. When we stopped spending quiet time together, things went really south. Really south. Like Antarctica South. 

It's amazing to me that God can still restore a marriage that is falling apart at the seams. Even when, at first, I didn't really want it to. Am I allowed to say that? So much had happened that I wasn't even sure that I wanted to put forth the effort it would take to get things to where they needed to be. God changed that. He changed my heart and my desires. 

We have spent a significant amount of time in counseling and trying to learn what real communication looks like. Not what it looks like everyone else, but to us. It is amazing to me to start figuring out some of the core issues we had long before we even lost Ava. I am selfish, and as Josh said in his last post, he is prideful. 

We are ugly.

But God is working in us. I never want to be back to where we were 6 months ago. 

I like laying in bed next to my husband and feeling an overwhelming sense of love for him. I like being able to snuggle up next to him while he's sleeping and hear him wake up with a smile on his face. 

I never want to get back to that point of indifference and complacency. It's a dirty place, and oh so easy to get to. 

God delivered.

pride onion

Hello. This is Josh. Long time… no talky. ☺

I talked to a guy and a girl this week who recently lost their jobs. They both feel a little worthless. (A story that many of us are hearing or telling lately) I know a girl who struggles with drug use. I know a guy who rarely sees his kids because he doesn’t know how to talk to his ex-wife.

The theme in church yesterday was pride.  It was said that most (read “all”) sins stem from the sin of pride. Is this possible? With so many of us struggling daily wanting to be taller, smarter, skinnier, wealthier, what ever…  can it also be possible that we struggle with pride?

To be completely honest, pride has probably always been my sin of choice. I don’t think I’ve ever been the up-in-your-face-and-braggadocious type…  I like people too much to try to make them feel bad. But when it comes down to it, my personality likes to think that it can do X, Y, and Z  better than most everybody else. I guess there is an “I need to believe in myself” issue as well. If we’re going to do something and do it well, we need to believe in ourselves.

But that’s not what I’m talking about.  I’m talking about us trying to work our lives out on our own terms.  “Sure I love God, and I will read my Bible some, and I’ll go to church, and I’ll listen to some Christian music.” But when it comes down to it, if God tries to veer us off of our own predetermined course, pride it rears its ugly head.

 After our daughter Ava died, I thought I did a pretty good job of putting my pride on the shelf. Then, after I was paralyzed, I thought I put my pride on the shelf. After all… being in a wheelchair and depending on so many people for so many things has a humbling (read “humiliating”) effect.

In reality,I don’t think that I let those things check my pride at all. It hasn’t been until the past five or six months that God has really begun to peel back the layers of my pride… kind of like an onion –  smelly.

Have I really earned anything on my own? God has gifted me with the skills and personality that I have. God saw to it that I was born into the family that I was. God saw to it that I was born in the country and in the time that I was. How is it then that I can get prideful about who I am and my accomplishments? I owe everything to God.

Beyond that, I am also prideful about what God owes me. 

I love working with my hands. I love building decks, landscaping, finishing basements, mowing, making homemade pasta, entertaining, grilling, working with electronics… and on and on.

I love music. I play guitar, piano, turntables, mandolin, harmonica… I love singing.

I love sports. I play basketball, I mountain bike, I golf (read “slice”), I jog, I lift weights, I sail, I wakeboard, I scuba dive, I play soccer… and on and on.

I love my family. I love throwing my kids are around and wrestling with them. I like camping.  I like doing Zoe’s hair.  I like playing catch. I like teaching how to make a layup. I like tucking my kids in. I like the look on Shelly’s face when she comes home to a clean house when she wasn’t expecting it. I enjoy fixing things around the house when they break.

But now I can’t do any of those things.

A person that I barely know gets paid to help me get out of bed every day. I need help taking a shower, using the restroom, cutting my bushy red beard, getting dressed, putting on cologne, and lots of other things.  Without abdominal muscles, I can’t sneeze or cough very well. I have trouble picking my nose. I can’t eat pizza unless it is cut up into pieces for me. I have to drink using a straw.

With society’s view of what a man, husband, and dad is… where do I find my value?  Where do I find my identity? 

Doesn’t God owe me more than this?

The answer is no… He doesn’t. I am just now beginning to be okay with that. I think that I am finally finding the definition of humility. It’s not thinking that we are worse than everybody at everything, but it’s knowing that God owes us nothing and being truly at peace with that thought.

Before you start to think that I am saying that I am unusually brave or insightful or godly… I’m not. I actually think that it is pitiful that God had to humble me in so many ways before I actually saw how deep my pride really ran. But praise God, he finally rooting it out at me! Yes!

I talked to a guy and a girl this week who lost their jobs. I know a girl who struggles with drug use. I know a guy who rarely sees his kids because he doesn’t know how to talk to his ex-wife.

We may lose our jobs. Are we so proud that we find our identity in our employment? Life may not be going the way that we thought it would. Does that mean that we will turn to drugs (or maybe other more PC addictions) to cope with the pain of not getting what we deserve? Maybe we have had to endure a divorce. Maybe someone we love has deeply hurt us. Does that mean that we will pass the pain down to our kids because we are too proud to make that connection?

Pride might be at the root of most of the sins that I commit, but I feel like God and I have finally turned a corner. There may be many more corners to come, but I am so thankful for the peace he is bringing me and the many many many blessings that He has brought into my life.

mother's day

So Mothers Day was the best one to date. I have had the joy of celebrating Mothers Day for 7 years now. I never thought being a mom would so vastly change who I am. I don't think it's even possible to comprehend how much your kids change you. Here we are, trying to be this light to our kids, to raise them to love God, to love people, and really, they are changing us. 

I was a special education teacher before I became a mom. I was always the patient teacher, the one whose students didn't ruffle her feathers. I thought this would carry over to mommy-dom. I was wrong. Seriously wrong. I am not the patient mother. I am always trying to hurry my kids. "Hurry, put your shoes on. Hurry, we're going to be late. Hurry, put on your seat belt. NO, not that way..." That's me. Not the patient mom like the patient teacher I used to be. I want to be patient, but I'm not. And then sometimes, I'm stupid enough to pray for patience (it IS a fruit of the Spirit) and then God tries to teach me. The only problem is that to be taught patience, I'm put in situations where I have to practice patience. Hmmm...

I want to be the mom who is not always doing something. I want to sit and just be with my kids. But, I'm always busy, busy, busy. Gotta clean the house, gotta mow the grass (that's a new one for me), gotta make dinner. Rarely take time to make cookies (they make such a mess!!!) or to just sit and read books, I have things to do! 

Isn't that sad??? I'm pathetic, I know. But I also know that some of my friends are the exact same way and don't want to be like this. Over the past 6 months, I have seen huge changes in my life in these areas. Yes, I am still impatient and hate to make cookies with my kids, but I see the worth in it. I see how much it lights up my kids eyes. It gives me a charge to think of what little thing can I do today that I would not have done with them 6 months ago? My own little adventure.

When I became a mom, I thought my kids were mine. I bore them for heavens sake, whose else were they? After losing a child, my view has changes drastically. God has loaned these kids to me. They are His. He has entrusted them to me and expects me to be the mother he calls me to be. He wants me to teach them to love Him. When He took Ava back to himself, I thought my life was over. I never thought I would survive. I now know that you do survive. Even if you don't want to. You learn to put one foot in front of the other, to continue on. I pray that this never happens again, but I now know something that I didn't know before. God will sustain me. If He chose to bring another one of my children home, yes, I would feel like I was going to die. But the funny thing is, he knows how it feels to lose a child. He lost his son Jesus. Losing Ava taught me that God is all I need even when my human body and emotions tell me otherwise. No, my emotions would be no less. No, it would not be easier. But I know that God would get me through. I know that these amazing children who reside with me are not really mine, but a gift from God. What a Mothers Day present.

easter

Easter has a way of making me feel like I belong. I belong to this body of Christ, this group of people who believe that Christ died on the cross and rose three days later. This holiday has a way of making me feel like the journey is joyous, rewarding, and full of hope. Yes these things are true. 

I've always liked the feeling of belonging. I liked it in elementary school hoping to not be the last kid chosen for a team, I liked it in high school when I felt like I "belonged" with a certain group, as an adult, I still rather enjoy it. :-) Maybe God is using this feeling to deepen my reliance on Him. 

Josh and I are attending a new church. This is the first time in almost 10 years where my husband is not the pastor. Being a pastor's wife gives you a sense you belong, even when you don't know anyone. Going to a new church as a lay-person is different. You actually have to work at getting to know people. You have to reach out and TRY. I'm not always good at this. I'm pretty outgoing when I'm comfortable, but not in large crowds. Put me in a group with 4 or 6 people and I'm good to go, throw me into a church of a thousand and I'm just another fish out of water. 

So, on this Easter Sunday, I know I belong to the greater body of Christ. God is using this situation to teach me things I have yet to learn. I don't like learning. It hurts. 

I know we are in the right place. The teaching at this church is so fulfilling. It is causing me to dig deeper and get to know my God more than I ever have. The worship is such an expression of complete adoration that I have not experienced elsewhere. I am thankful that God has moved us to where he wants us. It just made for a different Easter morning...

No matter where I am on Easter morning, no matter the circumstances of my life, the truth continues. I am a Christ follower.

my suitcase

I went to a viewing at a funeral home today. First off, why do they call it a viewing??? Did I really come to see the person who passed away or did I come to let the family know we were thinking and praying for them? I have a bad taste in my mouth already...

Second, what do you really say at things like that? I felt like I was in an alternate universe today. 

I entered the funeral home (which happens to be at the church I grew up in which is now the new funeral home) and realized I had not been to one of these things since losing Ava. There is something about seeing a shell of a person when you know the person is in a better place. It resembles the person, you can still touch the person, but they are really gone. I remembered wanting to take Ava out of her casket and to hold her one more time. Seeing the body gives me such a wide array of emotions. 

Mostly, it made me want to remember her more vividly today. I drove by her grave site. I talked to her baby brother about her. I told someone I have four kids. I doodled her name on a note pad. Nothing majorly out of the ordinary, it just felt "right."

I had to stop and pick up a prescription for Noah on the way home and ran into his nurse. She lost a daughter 6 years ago. The Lord knew I needed this. She was such an encouragement to me when I was feeling confused and distraught. She talked about how she loves her daughter more now just like she loves her other children more now than she did 6 years ago. It made me realize that I can love Ava more now than I did 4 years ago. I may not know her better than I did, but she has allowed me to know myself better. Probably in ways I never would have. Ways I wish I didn't, at least sometimes.  She said her husband describes grief like a suitcase. Everyone carries one.  Some are bigger, some are smaller. But everyone has to carry their own. I got to thinking about that and thought about how everyone lugs around their suitcase and nobody else can see what's inside. I want people to see inside of mine. I want to put it down, open the rusty latches, and open it wide. I imagine it to be brown, old looking leather, with goldish latches. It is worn, old. It's how I feel on the inside. But I want to open it up and let other people see what's inside. Here is an old shirt, the one I wear when I'm trying to act like I feel okay. Here are an old pair of shoes, the ones I wear when I'm trying to run away from the pain. Here are the heels I wear when I really truly feel like my life is still utterly amazing. Here is the bandana I wear when I know things are gonna get dirty. Cause it's messy here inside of me. Here is the lipstick I wear when I sing the praises of my Savior who has saved me from this ugly life. Here is the whiteining cream I put on my teeth so that I can shine and people can see there still is a light coming from within.  

So my suitcase...it's mine. Filled with grief. Filled with truth. Mine.

new normal

People have told us we will eventually reach a new normal. I think we are seeing that. It is incredibly refreshing and encouraging to see our life become what it has. I have been finding joy in the small things. This is something that I often struggle with. It has been so nice to enjoy a few minutes of cuddle time with Josh before falling asleep, or sitting on our back porch enjoying the warm weather watching Ephram explore our new yard, or watching Zoe help Noah read his homework. There have been many little things I have been so thankful for, and it's like I have new eyes.  So, it seems like we are coming into a new normal. We have someone coming 4 nights a week to help Josh get in bed. This has eased the load off of me and has allowed me to get some better sleep. Anyone who knows me knows how much I love my sleep! We continue to have help in the morning to help Josh get ready every morning. We are having a pretty predictable schedule of what happens during the week. I like feeling like we have a typical life of most parents of young children. We sit down for dinner most nights and read Bible stories to the kids. 

It has taken a lot for us to get to this point. Please continue to pray that we stay here. It's been a long, rough road but I see great hope ahead. I feel a sense of peace and satisfaction with where our life is. I pray this doesn't lead to complacency but with peace wherever God leads us next.

happiness

"Happiness is a perfume you cannot pour on others without getting a few drops on yourself." 

-Ralph Waldo Emerson

Okay, this isn't scripture but it is something that's been banging around in my head the past few days. It makes me realize how much my attitude ends up affecting me in the end. I'm not sure if I'm a happy person. I know I am a joyful person. Not sure that's the same. 

I've had a tough couple of years. Somehow my fear of becoming bitter forces me to keep life in perspective. It makes me dig into my Bible and cling to God like I never would if my life had been easy. It has made my faith more real to me than I had ever thought it could be. I am a changed person because of the last four years. I think for the better. Yes, I still have LOTS of issues (ask anyone close to me and they could start a loooong list), but I continue to be refined. 

On another note, Josh just finished drivers rehab. He has officially learned how to drive. He takes his driving test with the state of Michigan on Monday. Have you ever seen a quadriplegic try to parallel park? Pretty funny stuff. I can say that. I'm married to one and he knows I'm crazy about him! :-) He had a meeting with Michigan Rehab (a government funded program that helps people with disabilities get back to work and back to paying tax dollars) hoping that part of the cost of fixing the van for him to drive would be covered. It will cost between 35 and 40 thousand dollars. Shocker huh? (For those negative thinkers out there I am NOT asking for any money! I just thought the cost puts things in perspective.) Anyway, it was a no-go. I was pretty frustrated but Josh wasn't. That was the grace of God pouring on him. He and his rehab worker started putting together a plan of how he can get to school and then back to work. The poor guy would go crazy if he never went back to work.  Anyway, he left feeling pretty excited about going back to school in the fall. It will probably take a while for us to get the van outfitted for him to drive, but it WILL happen. He is excited to take the kids places, run errands, meet friends. Normal things that I take for granted. 

I'm going to cut this short. My sister just walked in the door. Notice, this is the second post this week. Be impressed. Be very impressed. It doesn't happen often! :-)

insecurity...

Satan is one crafty fellow. I hate him. I'm allowed to say that when it comes to the devil (for all of us moms of young children, you know what I mean). How is it that he know my insecurities and uses them against me every time? Why do I continue to fall for his sneaky lies? 

After Ava died, I asked people to pray very specifically that I would get the truth of God's sovereignty into my heart. God knew Ava's life on this earth would be short, and I didn't want to destroy myself with the never-ending "what if" questions. God granted that request a thousand times over. Yes, I wish it could have been different. Yes, it was terrible. Still is. But God is sovereign. He knew before time began the number of days Ava would be here with us. My abilities/inabilities as her mother could not change that. 

After Josh got hurt I still did not question God's sovereignty. I knew he could still use Josh in a mighty way. I knew he would give me the strength to handle whatever lay ahead. Yes, I prayed for a miracle (still do every once in a while) but the miracle I asked for was not granted. Still, I trusted. 

Now I lay here in my bed with the beginnings of an understanding of who God made me. I have been doubting myself so much over the past few months. I am realizing that doubting myself, when I have placed my life in His hands, is doubting God. Yes, I am worth loving, yes I am worth friendships, because of Christ. He has placed these needs and desires in me for a reason. He created ME. And that means I have to love me- because I am his. Wholely, totally, completely all His. This is where my self-worth comes from. So, all of Satan's craftiness has only brought me one step further in my walk with God. Yes, I still wonder who it is that God wants me to be, how he wants to use me, but I will continue to proclaim that I am worthy because of Christ!

real deal

(from Josh)

Most of you realize that I rarely post on this blog. The biggest reason is that due to a PC (Vista) issue I don't have voice recognition software. I am typing this with a thumb. :)

Shelly doesn't know that I am posting this. She is picking up some stuff at Meijer.

Shelly is the real deal. She is an amazing, Spirit filled woman of God. She daily spends time in Scripture. She is a great mom and wife and one of the best people and one of the best friends you could ever know. When she writes of her journey, she writes with complete honesty and humility. (you can all tell this).

She is a spiritual giant.

And we do have a lot of fun around here. Check out the YouTube video... "Movie Time"

NOTICE THAT SHELLY POSTED YESTERDAY!

thank you

Thank you to all of my reader friends out there who have written such encouraging words for me. When Josh read what I had written, he was a bit taken aback and asked me if I was sure I wanted the whole world to be able to read some of my innermost thoughts and struggles. I thought about that and prayed very specifically for God to reveal His desires to me. 

God has given me a passion for sincerity. This can sometimes be my downfall. Everyone knows what I'm thinking most of the time. Especially when I write on here. This is sort of my therapy. It gives me somewhere to process my thoughts on life and my relationship with Christ. God is doing a work in me and on my heart. I have been forced to look at things in me that are ugly and wish would just go away. God continues to follow me, encourage me, and tells me how much he loves me. Even when I mess up time and again. 

Over the past week, my heart has been having a work done on it. My heart has felt more contentment than it has in a long time. I know this is not something I am doing but something that God is doing. I still am wondering a lot of things, same as before, but I am feeling much more at peace with it all. 

Yes, I know many things about myself. I just wish that God would reveal to me now what all this "stuff" in my life is teaching me. Guess lots of these answers will have to wait until heaven. 

Wanted you to know how much I appreciate your prayers. Please keep praying for my heart, that my desire would be whatever my Father's desire is.

hmmmmmm...

God continues to work in my life. He has made himself more apparent over the last few months than the two years before. Yes, I know God was with us, yet I see him so much more clearly. This growth comes with a great amount of pain. I just read somewhere that "nothing grows on the mountaintops, it all grows in the valleys." 

I am in a valley. I can only look up. But you know what I see? I see a God who continues to be faithful to me who seems more real than he did yesterday or the day before. I am a woman falling apart on my own and yet God continues to hold me together. I have been crying out to him that the life I want, the one I deserve is nowhere to be found. He then reminds me what I really deserve...and it's ugly. I am an ugly person without God. I am selfish, judgmental, and angry. God takes these ugly things and works in my life in ways that I don't deserve. I am still these things. I am a work in progress. I am a woman who continues to try to figure out who I am in God.

This has been such a heartache for me over the last few months. Who am I? Am I a wife, mother, Christ-follower, friend? All these things are descriptions of me, but I seem to have lost ME. I really don't know who I am. I am confused. I am hurting. But I know one thing to be true. Without God, I am not me. So, I hold on to this one truth and continue on this journey. I look to his word and know that many went before me who feel the same as I do too. I pray for God to work in this ugly heart of mine and make it like his own. Show me who I am God, show me who I am in You.

two years

It's been two years since Josh's accident. Wow. Time flies and stands still at the same time. I amazed at how far he has come and how little he has come. I really believed he would walk again.  God had other plans. I realize he may walk again if science comes far enough or God decides a miracle is in order, but I thought he would walk again, like a year and a half ago.  Every once in a while, he will have a weird sensation or pain that makes me think that it's still possible, then reality hits. My husband is a quadraplegic. It sucks. Is that okay to say???

Outside of it being two years, we continue to carry on. Life has been tough the last two months. More things not related to this, but tough all the same. More ways I am learning to trust the God I love. Sometimes I feel like my heart may break, yet I make it through the day and wake up again the next morning. I am learning that God knows a heck of a lot more than I do. I knew that already, but I am learning again. I am learning it deeper, more fully; not without pain...but with my God.