6 Years

Today is 6 years since we lost our precious Ava. 2 months 27 days was not long enough. Not enough time to capture a lifetime of memories.

I remember her scent, her painted pink toenails and her brother and sister calling her Baby Aba because neither of them could say their "v" sounds. I remember Noah biting her toes. I remember her belly laugh. What I wouldn't give to hear that sound again, coming from my sweet, baby girl.

But after six years, life has continued, even when I begged God for it it stop, when I begged for Him to take me too. After 6 years, the urgency is not always present or prevalent. There is a lot of the time where I feel pretty "normal".

But come the months of May to August and I feel like losing her was only a breath ago. I feel my heart race, my chest tighten, and my stomach begin to feel nauseous. Soon after Ava dying, I remember being desperate for mothers who had lost children to tell me how long the suffering lasts; how long will I feel this total emptiness? Little did I know then what a long road it would be. Little did I know I would treasure the heartache when it comes because it makes her feel close, real.

To say that Ava's death was only really about Ava would be misleading. Ava and God go hand in hand. I rarely think about one without thinking about the other. It's sort of like a marriage, this joining of two people, and after a time, you're just one. Somehow, Ava and God are so connected, interwoven together that it is just natural to talk about God when I speak of or remember Ava?

How could I not see God's mercy when I look into the face of my four year old? His sweet sweaty face, hair clinging to his forehead, so engrossed in living the life God has given him, the little boy who never would have been if his big sister did not go to heaven so early. How clearly I have been shown His peace, even amidst the tears. That big God, who can do all that stuff loves me. I am a child of the King, and so is my Ava. We're coming baby!!!

Interesting

Since Josh got hurt in January of 2007, we have had lots of deal with and grow accustomed to. One of the things we have not had to deal with is extra health issues.

Josh got sick after minor surgery in October and it seemed to carry on forever. He finally recovered totally after about a month. Since the first of January we are back to more health issues. He has spent, by far, the majority of his days in bed since then.

Over the last three years, Josh has become very independent in his day to day life during the day. He needs help getting up and getting in bed; the time spent in between is mostly help-free. He spends a good portion of his day working on different projects in his office, meeting with different people, and just general life. I get his lunch ready, pour his coffee, just basic things that I probably should have done more of even before he got hurt. None of this takes any major amount of time. Just our new normal.

So, now that he has been down for the count, things have changed. Drastically. He calls me to itch his neck, to change the TV channel, to just come and lay by him. Many days, he never comes out of our bedroom at all. This has become extremely taxing emotionally on Josh. In the past year or so, he has become so much more aware of how his situation affects me. It is difficult for him to know that his paralysis and absolute need for help stresses me out. We are in a difficult situation.

Then I look at the situations many others are in and know that we are blessed. Josh is still here with us. His mind is the same as it was before he was hurt. Our kids bring us great joy. God has provided for us in ways we never dreamed possible.

All the same, we are still having a hard time. Please pray for Josh's emotional and physical wellbeing. Pray for our sanity. Pray that we can keep a Christ-like attitude when I feel like throwing a grown-up sized temper tantrum.

Thanking God for grace.

What is God Up To?

Suffering seems absolutely out of control right now. Thankfully, we can be on the praying end of it and not at the suffering end right now. I can think of so many things going on in people's lives that are just heartbreaking, which makes me know God is up to something.

I watch my best friend Holly and her husband Aaron struggle with the deep pain of making life and death decisions in regards to the next step of treatment for their daughter Kate.

A family from church had a baby girl born with Down's Syndrome only to find out that the doctors say she only has a week to live. Praise God she is still here two weeks later.

Another family from church lost a child in a snowmobiling accident last weekend. The are clinging to God to get them through this, knowing that their daughter loved the Lord and where she is.

Josh got the most random call about 2 weeks ago from an acquaintance from college who wanted to talk. He and his wife had lost their three and a half month old the day before. I had the opportunity to talk to his wife last week. All I hear is agony, frustration at the road ahead...and then hope that God will sustain. Faith.

I hear about all the pain going on in Haiti and then see on the news people singing praises to God with their hands held high.

Josh's cousin and her husband are missionaries in Jos, Nigeria where there is so much unrest and Christians are dying. They were spending the night in a safe place, praying for protection over others and their family all while hearing gun shots. They have a 7 month old baby, and I can only imagine the fear of knowing what is going on and wanting to protect your child.

Yet, all these people are clinging to faith. Faith that our God knows what He is doing. That nothing goes unnoticed by Him, that He knows, that He will sustain, that He will protect.

Suffering leads to unimaginable growth, if only we allow God to do it. He wants to grow closer to us, to protect our hearts and our minds, to grow in a love relationship with Him.

For me, it was a choice. I knew that I could choose to become bitter, turn my back on "this God" who had the power to save my daughter, to stop Josh from diving into the ocean and breaking his neck, and yet He chose not to. Not because He doesn't love me. But because He knows what is best for me. Yes, I want my daughter back. Yes, I want Josh to be able-bodied. But the growth and faith that has been born of tragedy is a blessing. Maybe a blessing in disguise, but a blessing all the same.

Our God is in the miracle working business. I have watched Him restore a marriage (mine) headed down a road I never imagined possible. I have experienced His strength when I thought my heart would break from the grief. That is a miracle. I have seen a baby who was supposed to be in heaven by now, continue to baffle doctors as her vitals grow more stable not less.

And yet, God could still choose to take any of these people to be home with Him. We live in a fallen world. Yet, I continue to hold on to the hope that does not fail, my Father who will never leave me or forsake me (even when I don't feel Him near), knowing that when my life on this earth is over, it will only get better. Waaaaay better.

God is definitely up to something. What it is, I have no idea. What I do know is this- it WILL be for His glory.

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.