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!!!!