Thursday, September 24, 2009

For the inquiring mind

Well, I found out today that the typical turd (yes, you heard me right, I said turd) washes and dries just fine. I pulled a load of clean laundry out of the dryer this morning (load #9 today) only to look into what I thought was an empty dryer, and found a turd...compliements of Adleynne.
Never a dull moment in a day for a stay-at-home momma.



lint ball on the left, turd on the right

Wednesday, September 23, 2009

Time to talk

There comes a point, where (big sigh), you're ready to talk. About a month ago, I was ready. We were having a Saturday night worship service at our church and people were asked that if they wanted to give a testimony, to let the organizer know. So, about a week before, I committed. Big step... As I prepared that week...man it was hard. Not hard talking about the actual events of Nolan's diagnosis, but rather, hard becuase I wanted to be clear about what God has been doing in me rather than the pain and thoughness of the situation.

We've been so blessed at our new church here, and, when you find a church that you want to commit to, it's also (I think) important to let people into your life so that you can be ministered to. Someone very wise said to me not too long ago, "Everyone has a time in their life where they need to be ministered to, and this is yours." You never want to be that person who's always got a crisis, or be that new someone who comes in and says, "alright here we are and here's all of our baggage." But, in some ways, that just so happened to be where we were at the time, and our church has loved on us and cared for us in a way that I won't ever forget. They've been SUCH a blessing.

And thus, I decided to share with the church family, where we were. I share this now with you, all of my blog readers, as a way of saying...here we are, look what God's done, how great is He!



August 2009
When I first started putting this testimony down in words, I had a really hard time. I felt as though I was focusing too much on detail of the events that have brought is to this point, rather than what I was really wanting convey...how good God has been to us. My main focus is to share how we’ve seen the Lord through a trial in our lives and how He’s shown himself faithful to us.

First I have to start with some detail so that you know what I’m talking about, so here we go…
June 3, 2009 is a day that changed our family forever. We received news that a blood test for our Nolan came back positive for a chromosomal abnormality called Williams syndrome. My heart sank and cried, “no!” After a few minutes of getting the very basics from the doctor as well as an encouragement to call back once we had had some time to process it all, we hung up. It was nap time at our house and so it was quiet. Brandon and I sat in our living room in silence for a while and then reality set in. We went to the computer to research the syndrome some, and became very overwhelmed with the long term possible outcomes for Nolan bug. Along with any syndrome comes a laundry list of health and developmental problems. Some of these kids have stynosis, which means narrowing, of the arteries. They can also have kidney problems, a 75 % chance of some form of mental retardation, a lifelong delay of gross and fine motor skills, eye problems, etc, etc. Will he be able to go to a regular school? Will he be able to live independently as an adult? Brandon encouraged me to be informed, but at the same time not to dwell on what could be, because really doctors only can know so much. We set up a game plan to have Nolan seen by all the necessary specialists to insure that his body is healthy. Quite honestly, we’ve spent most of the summer seeing doctors and having tests run. Once we had a game plan, we decided this…nothing had changed. Nolan’s our boy, we are crazy in love with him, we’ll always do what’s best for him at all times, just like we do for the girls…it just might look a little different. I haven’t done any more research, in large part to protect myself, but also because I just can’t look at my Nolan all the time thinking about Williams. I don’t want this to define him as a person. Although at his age he should be crawling, Nolan doesn’t crawl yet because, well, he just hasn’t (Side note: How amazing is it that since I gave this testimony, Nolan bug is crawling!). When it’s his time, he’ll do it…not because he has Williams syndrome.

I’d be lying if I told you that those first few weeks after the diagnosis that I wasn’t angry. That I didn’t try to pinpoint a sin so great that God decided to discipline me for it by allowing me to give birth to a child with special needs. “I just don’t understand how this happens," came out of my mouth a lot. We have 2 perfectly healthy girls with no family history of anything like this…I just don’t get it! The odds of this happening are 1 in 20,000….and it’s us! Man! I just didn’t understand why God would allow us to conceive, only to allow us to watch our child struggle? I had never been so horribly sad in my life.
I can’t do this Lord! You picked the wrong mom for Nolan! I just don’t understand…

Now I want to share what I’ve learned and where I am now.

First, Nolan is a complete blessing. He wakes happy, smiley and is generally always this way. He works hard during his 2 hours of therapy a week and is making wonderful progress, while not falling any further behind developmentally. How can I argue with that? Only by the grace of God, I can’t be sad, for many reasons, but especially because, he’s not. Through all this I’ve also learned that the only way you can explain the odds of 1 in 20,000, is God. Children are gifts from God, and that goes for Nolan too, even “flawed” by earthly standards. He gave Nolan to us specifically, intentionally; to not only teach us things, but also for God to use us for Him. I don’t know what that purpose is, and I may never know. One of my biggest concerns is watching Nolan struggle, or that fact that he’ll more than likely have a "hard life." But, what is normal? God is constantly changing my perspective on what’s “normal.” It’s easy to compare him to other kids his age and consider them as normal. But Nolan doesn’t seem to care that he’s not doing what they are doing quite yet. So, who’s attitude needs changed…mine, or Nolan’s?
If you ever need an earthly picture of unconditional love…watch our girls with Nolan. Their love and service for him is so perfectly childlike and innocent … it’s a daily reminder to me of how I should love and serve others. He’s their Nolan…nothing more nothing less. They don’t know he’s delayed or that he could be different than other kids. The compassion I see them developing for others is a blessing, one in which I wonder if they would have if it weren’t for Nolan.

I also know that God didn’t give us Nolan to punish us. He’s a loving God who wants what is best for his children, even if it means a hardship. He’s always working together for the good of those who love him. If I believe that, then I know that somehow God will turn all of this into good, because he’s promised that. If Nolan was a punishment, what does that say about Christ’s sacrifice on the cross? It would say that His dying covered most things, but not all things…and I know that’s not true. If you would have asked me 5 years ago what would be the worst thing that could happen to me, other than losing a child, it would have been this…a child with lifelong problems. Now, I can say it’s been a blessing and it’s taught me so much, just in 2 months .

Prior to June 3rd, the 2 previous years had been the hardest of my life. Our move here 2 years ago this December was incredibly difficult. We were officially on our own with the kids, no grandparents to help, no date nights, no friends, etc. Now I can see God moved us here in perfect timing to be close to Riley. God completely orchestrated that to ensure that we’d be close to all the right doctors. I knew from the moment Nolan was born something wasn’t quite right, and throughout the next year of wondering and waiting, it was borderline torture; sleepless nights, moments of sheer fear of possible outcomes. To finally have an answer, although tough to swallow, was somewhat of a relief. Ok, we have an answer…let’s move on already!


Some of my favorite song lyrics come from Bethany Dillon: the calmer of the sea, here in this room with me, so gently welcoming the weakest things in me. I’ve felt this a few times in the last few months. In my times of great despair and sadness, I’ve felt the Lord’s presence. Never in my life, as I’ve cried with a broken heart, have a felt such an overwhelming peace that I know only comes from the Lord. It’s so comforting to know that such a great and mighty God welcomes our weak moments, because it’s only in those moments where we fully learn to lean on Him by embracing His will I don’t want to be a “plastic person” with a fake smile, but rather I want to be able to say that it’s been hard, I’m broken, but man I can see the Lord in this.

Some dear friends of ours who counseled us after the news encouraged us to make a mission statement for our family. This is the legacy we want to teach and leave with our kids…Based on Romans 8, our family will choose to be thankful and “rejoice in our present sufferings (vs. 18).” “And we know that in all things God works for the good of those who love him, who have been called according to his purpose (vs. 28). “ Christ’s sacrifice on the cross was sufficient for all” and therefore we know Nolan Levi was not a mistake, chance, or luck of the draw, punishment, etc, but rather a gift and an opportunity to be “conformed to the likeness of His Son (vs. 29).” “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword (vs. 35).” Christ loved us enough to die, we know that because of the cross. Nothing can separate us from Him. We will rejoice in our hardships because they are a reflection of His love.

Monday, September 21, 2009

Another shameful plug

This plug for uncle Justin was caught on camera and 100% unorchestrated.. The singer is Aubrey, the door you're looking at is the bathroom door, and the song is uncle Justin's All Things New. Enjoy!
video

Justin Paschal

It's come to my attention that our blog has become quite popular...so popular, I may have to start using code names and such. So, with that responsibility, I feel the need, and have the desire to shamelessly promote my brother-in-law's new CD:)

We had the privilege of attending his CD release party this weekend and we're so thankful to be able to do so. Especially considering that a week prior, Nolan was a swollen mess. But, because God so graciously has allowed Nolan's healing process to be so quick, we were able to attend.



For those who don't know, the way I initially met Brandon was through school. His family and mine lived in the same town, and actually his brother Justin and I are the same age (both hit the 30 year milestone this year). Justin and I still get a kick out of the fact that we "went out" (that's the technical Jr. high term, right?) when I was an eighth grader and he was a freshman. He says he still has a "love" note that I wrote him...I don't know about that:) And thus, my first encounter with the Paschal boys.



Justin has an amazing and powerful testimony, and it's so great to see someone using their God given gifts for His glory.

Check him out at:

http://www.digstation.com/AlbumDetails.aspx?albumID=ALB000034873
www.myspace.com/jpaschalmusic

Ok, I'm done with the shameful promoting:) Actually, I'm proud to do it.

Thursday, September 17, 2009

The difference a week makes


Just one week ago today we were...err...well...I don't think I want to go there :) Here he is with nutter butter on his chin:)

Wednesday, September 16, 2009

Adie's big day

In an effort to not let Adelynne feel left out of the whole "school thing" that Aubrey gets to do, I enrolled her in a free program at our library called Bookie Boogie Woogie. It's a time for kiddos her age where they sing and dance, have story time and fun stuff like that. It's every Tuesday at 11am. So, I'm able to get Aubrey to school, Nolan home for a short nap and then BBW. She was so excited to tell her dad what she did at her "school"...something just for Adelynne.
Adelynne and a gigantic piece of bread...
Mommy and Adelynne
Makin' music
Story time
Little green shark stamp she got for being good.

Aubrey's first day...PreK

Ok, so I'm little behind on some events, but, dang it, I couldn't think past the surgery last week. So, I'm going to try and catch up. Aubrey's first day of preK was last Tuesday, and she was gone 4 whole hours! Hard for mommy, and Aubrey too, she's wiped afterwards.

Ready to go!...
A shot with her momma...
A sweet shot with sis...

Aubrey, friend Sarah, and friend Brianna...such sweet girls.

Aubrey's class is the Goldfish class. They meet on Tuesday's and Thursday's from 9am to 1pm. They get to take 5 field trips! Miss Sharyn and Miss Jamie are her teachers, and we are blessed to have them. I love watching her learn and also the sweet friendships she's made.


Tuesday, September 15, 2009

I'll blog more later, but wanted all of you to see Nolan. He looks great today. His eyes are open more and more, his appetitite is coming back even more, and he's even back to crawling, pulling up, etc. Amazing!

Monday, September 14, 2009

We're going home...



Brandon prayed over Nolan this morning, just asking Him to please open Nolan's other eye so that we could go home and be a family again. God answered that prayer and Nolan and I are waiting for daddy to go get the truck. He's sleeping right now in a little red wagon...what a sweetie. Thankful for answered prayers...
Patience is not something that comes easily for me. It's probably the #1 thing I dislike most about myself...the fact that I just get so impatient. I've prayed for years, "Lord, make me a more patient person. Give me patience please." Well, the Lord just doesn't hand over patience like we want him to, but, rather, puts us in circumstances where we have a choice to either trust in him and therefore are patient, or, we allow our "humanness" to take over and therefore are impatient. I am in that struggle right now. I haven't slept in 4 nights, my baby is restless because he's not at his house in his bed, I desperately miss my princesses, I'm running out of clean underwear, I am tired of food from the hospital cafeteria, and I just want to go home. We are waiting on one of Nolan's eyes to open. We saw one sweet little eyeball this morning and are now waiting to see the other before we go home. If it doesn't open today, we'll be here yet another night. Ugh! Remember that whole patience thing...um, yeah, I'm struggling.

However, Nolan is doing great. Playing during awake periods, almost has his normal appetite back, the swelling is mainly just in his eyes and is looking more and more like himself every minute.

While I am struggling with patience, I am not struggling with thankfulness. There are so many families here who live here for months to years at a time. I can't imagine. For us, I know we're going to get to go home. Because of our short stay, Brandon and I were able to be here together while the girls have been taken care of at our home. Some families who have chronically ill children have to leave them here through the week because they can't miss work, and then they visit on weekends. I can't imagine leaving Nolan here. Even on the toughest days, I know we are blessed because this could be so much worse. I'm thankful...a little impatient, but thankful.

Sunday, September 13, 2009

Our first set back

Nolan continues to do well. He's eating more and more and still drinking well. He's not sleeping all that great because he's uncomfortable. He kept flipping over onto his belly last night because he's typically a belly sleeper, but because of that, his head wasn't propped and his swelling hasn't gotten any better. He still can't open his eyes yet and we can tell he's frustrated. The earliest we'll go home now is tomorrow.

If you have a weak stomach, don't go any further.










.

This is a shot of the right side of his head.
This is the top of this head.

Saturday, September 12, 2009

Day 3

Nolan began having "poopies"last night, and has had 5 or 6 since...which is very good. He woke this morning and took a few bites of rice cereal and continues to drink consistently. He is still very swollen, but it looks as though that has peaked. We're hoping to see the swelling to go down in the next day enough that he can open his eyes. Brandon held him some this morning and he began to show some of his personality with his da dad's and more talking...also banging some toys together and attempting to clap. All of this we are so thankful.

Brandon and I both were able to sleep (I use this term loosely) in his room last night, and we were able to be around to soothe him and love on him during his times of restlessness.
Neuro surgery came in this morning and they were very pleased with the drinking and pooping and they now say we just wait on the swelling to go down. They removed his bandaging and I'm amazed at what he's endured. What a tough little boy.



Friday, September 11, 2009

New digs

We've just been moved down to Nolan's new room, out of the ICU. The nurses and staff have been great. Nolan continues to rest pretty comfortably most of the time, but does have some restless periods. His eyes are officially swollen shut and we can tell that's hard for him. Brandon and I have a room at the Ronald McDonald house for the time we are here and we were able to go and nap and shower late this morning. We are still amazed that we've had no major complications and the Nolan is proving to be a trouper. God is good.

My aching arms


Nolan is doing well this morning. He's really swollen, but because his fever is gone and because he's taking lots of fluids, they were able to remove his catheter and arterial heart monitor. That also means he'll be able to move out of the ICU and into a regular room today. Dr. Smith has been in this morning and said that if he can open his eyes by Sunday, we can go home!!!




Once they got some of the stuff off him, I was able to hold him. Ahhhhhh....

Thursday, September 10, 2009

Time

So, it's getting late and all of our family have left for the night. Brandon is in the bathroom doing whatever men do before "bedtime," and I'm sitting in the room with Nolan watching him sleep. What a day we've had. Now that it's over, I can actually talk about the events from the day with some of the burden lifted. My greatest fear is now gone...I actually really truly feared losing Nolan today. I know, I know, way to be positive, right Megan? But I'd be lying if I didn't say that I thought that possibly the events from today were going to be a bookend to Nolan's story. You can't help but wonder, is this why God has allowed the last few months to happen, to strengthen our dependence on Him, so that we're "prepared" for something really big? I've prayed, "Lord, please don't take our baby. I trust you, I love you, but, I just don't know if I could handle that." But, here I am again, reminded that the Creator once again, makes no mistakes, and He was present in that operating room today. As God tells Hermie and Wormie in The Common Caterpillar, "I'm not finished with you yet," and He's not finished with Nolan either.

They took Nolan from me at 7:30am, and immediately, my arms ached for him. I am so in love with that little boy... A nurse came and informed us at 9:22am that Dr. Smith (the neuro surgeon) was just beginning. Wow! 2 hours of getting him prepped. Thank you Lord for such a meticulous surgeon! She wanted to make sure the anesthesia was working with no ill effects, they got his 2 Iv's in, an arterial heart monitor in, and she wanted to have him in perfect position. The surgery lasted until about 4:30pm. Dr. Smith made the incision (ear to ear atop his head), pulled his skin and muscle down and removed his forehead. Dr. Havlik (the plastic surgeon) then takes his forehead and places it on a tray and cuts it into pieces to reshape it and makes it bigger by using disolvable plates and screws to connect the pieces. He said he cuts Nolan's forhead into 15 pieces!!!! He then places the forehead back in position and Dr. Smith comes back and closes him up. Wow! I mean, who knows how to do that? Thank you Lord for gifting people with these skills.


Now what we have to expect is 1-2 nights in the ICU and a 4-5 day stay total. They also expect his eyes to swell shut for a day or 2, but once he's able to see, we will get to go home. Right now, he's resting very peacefully. He's also running a fever, which is normal for post surgery.


We thank you all for your prayers. We heard them, we felt them. Please continue to pray for a quick and complicationless (I don't even know if that's a word) recovery. Please also pray for Nolan as his eyes swell shut. We imagine that will be scary for him. Thanks again for all your faithful prayers.
He's out and resting peacefully. We are thanking God for a perfect, successful surgery. He's taking fluids and looks wonderful. We expect significant swelling late tomorrow, that will be the worst part. Right now we're rejoicing that our baby is safe.
Just got word from the nurse...they are closing him up! The repair work is done. Once he's in recovery, we'll get to see him! Yay! I can't wait to kiss him! Thanks so much for all the prayers.
Nolan is in surgery. The nurse just came to tell us that he's a sweetie and took to the anesthesia really well. He's in position and everything is prepped and they are about to begin.

Sunday, September 6, 2009

Getting ready


Mom said I needed a hair cut before my surgery on Thursday...something about whoever would shave me at the hospital wouldn't do a good job. So she buzzed me while dad helped. I hated it when the clippers got close to my ears. But, I got a nice warm bubble bath all to myself afterwards. Mom said she was sorry and cried while I took my bath. She's weird like that. :)While I didn't like the process, I do think I look rather handsome. Don't you?

Thursday, September 3, 2009

A couple of things...

1. I was able to sleep last night! Yay! Thank you Lord.

2. I successfully gave blood last Wednesday. The experience was traumatic;), but successful none the less. I'm still waiting for my Red Lobster reward;)

3. Many of you have asked if it would be ok to come by the hospital during Nolan's surgery. Our answer is "yes!" We figure the more distractions the better. We'll be there at 6am (9/10) with surgery to begin at 7:30am. The surgery will be on the 2nd floor of the main building of Riley. Brandon and I will be given a small waiting room back in the day surgery area that they tell us is for parents only. There is a receptionist in the day surgery main waiting room, so if you don't see us, ask her. Please don't feel like you have to come, but, we would really appreciate your prayers.

One more thing, please pray for little Aubrey. She's having a hard time with us telling her Nolan, Brandon and I are leaving. She's become very clingy and crying when she thinks about it. I pray with her when she gets upset, and love on her, but, man, she knows something is up. Just pray that the Lord would ease her fears.

Tuesday, September 1, 2009


It's hard to believe that in just 8 bedtimes (Aubrey's way of calculating time:), this sweet little face goes into surgery. Not just any surgery, but cranial reconstruction. Oy Vey! I'm trying my best not to think about it, but, I'm beginning to struggle. Up until now, peace came easy, and now, I'm having to think about it...make a conscience effort to be positive. However, I haven't been able to sleep for a few nights now and each time I look at Nolan, I think about the surgery. On the other hand, so many people have offered help of any kind, and we are so thankful for well wishes and prayers. We definitely feel God's presence...
Nolan's surgery is scheduled for Thursday, September 10th at 7:30am. We're supposed to have him there by 6:30am. It's a 6-8 hour surgery that will require a 3-5 day hospital stay. We've applied for financial assistance through Children's Special Health Care Services and are awaiting approval or denial for that. We also had to apply for Hoosier Healthwise with the other and found out last week we were denied for that. Package C we were denied because we have health insurance. Package A we were denied because we make too much money. Ha! If a teacher makes too much money, who qualifies? I'd venture to say they aren't working? So, all of our eggs are in the Children's Special Health Care Services basket. Would you please pray we are approved for that?
Anyway...God is good, all the time. A great reminder for a day like today.