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. :-)