How Are You Doing?

(This is one of those posts that will be filled with raw honesty -- I don't mean to offend, I just want to be truthful.)

I have decided that I hate going places where I might run into people who know about Ryan's death, but that I don't actually see very often. They all seem to give that sad smile and ask, "How are you doing?" I know that each and everyone of these people is being kind and thoughtful, but I never know what to really say. Do I say fine? I am doing fine -- I am not great; I have definitely been better. I know that I could be worse...isn't that what my HOPE is for? I wonder if people really want me to go into detail about how I am doing at that exact moment...if I am out doing something I might feel completely normal.

So, how am I doing? There are moments where I feel like my breath has been sucked out. I can't really believe that Ryan is gone; sometimes it physically hurts. Those are often the times that I remember something that I used to do for Ryan, with Ryan, or when I "take care of" Ryan's things. It occurs most often at home when I am by myself. It also hurts as I read about other CFer's with new lungs -- good and bad experiences. I wonder what if...

All of my days are not filled with pain. I am not always sad. God continues to fill me, strengthen me, and give me moments of joy in each day. As I have said before, God has put so many wonderful people in my life who love me. Their support and strength is a gift from God. Lily and Wyatt are usually my "joyful moments" what a great blessing they continue to be.

Thanks to ALL of you who let me "be," whether that being is happy, sad, or indifferent. Thanks to those of you who listen when I talk about Ryan or just hang out and make me laugh.

Picking Up Toys

For those of you who know me well, you know that I am a little obsessive about having the house picked up. From early on I have tried to teach the kids to pick up their toys. Up until they were about 18 months old we would let them get out whatever they wanted and then we would try and do a major clean-up of toys before bed. This method did not work for us. It was a constant battle to get them to pick up toys and the kids and I would end up frustrated while Ryan was left to calm us down. :) Since the time of meltdowns, we have been teaching the kids to put one toy away before getting out another. This has always had to be done with prompting, but there is much less frustration involved.

Today was a milestone of picking up toys in our house. Lily and Wyatt were reading books and playing with tractors. Wyatt decided that playing with his tool box would be more fun so he went and got it out of the toy room. He held it up to me and I said, "Sure, you can play with that." I didn't say anything about the other toys because Lily was still playing with those. The next thing I know, Wyatt is stacking all the library books on the bench in the living room and putting his tractors in the toy bin. All by himself! No prompting! It made this obsessive Mommy proud! (And his sister didn't care because she was trying to get in on playing with the tool box.)

New Layout

I know that you will all be shocked to see that the blog has a new layout. I spend a lot of time on the blog, but it is relaxing for me and helps reduce a little of the stress of life. I found a great website (thanks, Kara) at http://www.thecutestblogontheblock.com. I love the different (free) layouts that they have, but I have noticed that my layout doesn't always come up when I go to my blog (or others that have used the same website). So, if you are reading the blog and it is a completely white background, try refreshing your screen to see a little more color.

Friends

Life in the ICU was not fun, but there were things that made it a little more bearable. Most of those things weren't actually things, they were people. Ryan (and I) had so many wonderful nurses, RT's, techs, and doctors. These care givers became friends. They would stop by and say "hi" even if Ryan wasn't their patient. They walked with me as I went through some of the most difficult times of my life. I miss these friends!

Last night I was able to chat with two of them on the phone. It was so great! It was good to catch up and hear their voices. It was great to be able to talk with people who were there with me during the last 10 1/2 weeks of Ryan's life. Some day I hope to be able to go back to CCMU and see many of them, but that will probably take a little time... (Not that I wouldn't love to hear from those of you who read this:) -- for those of you who were looking for my email address, I think you can link to it in my profile.)

Thanks again for all you did for Ryan and for your friendship!

10 Things God Wants You To Remember

10 Things God Wants You to Remember -- Roy Lessin

I will be with you.

I will give you rest.

I will answer you.

I love you.

I will strengthen you.

I will bless you.

I will provide for you.

I am for you.

I will not fail you.

I believe in you.

This list is on a mug that was given to Ryan and I while we were at U of M. I enjoy my coffee from it each morning and I am grateful for the reminders of who God is and how he feels about me.

*Thanks for the mug, Aunt Cathy and Uncle Dave!

Wyatt's New Do

If you know Wyatt, you know that he is a little particular about most things (I don't know who he gets that from). One thing that he has definite likes and dislikes about is his hair. He gets mad or frustrated if his hair so blown by a fan (but he loves to ride in the car with the window down). He does not like me to comb his hair or spray it with water to try and tame it, but he HATES haircuts.

I decided yesterday that one 10 minute haircut of screaming was better than daily battles with his hair and spray bottles. If any stranger would have been near my parents' house yesterday morning they would have thought I was hurting him (I cut his hair outside for easier clean-up). I decided that the best summer cut for a little boy is a buzz cut. He looks so OLD, but adorable!

Of course the pictures I have of his cut aren't great, because another thing he is particular about is having his picture taken :) This is the best that I could do.

Here is a picture of Lily, because if Wyatt has his picture taken then she must "TOO"!

Black and White

I love pictures in black and white -- here are some from our beach album that have been edited to black and white.

THE BEACH!

The kids and I went out to the beach tonight with Nana, Papa, and Auntie Val. I was a little nervous about going because the kids have never been there (with the exception of Wyatt going in the middle of winter when he was 9 months old), it was very hot and humid today, and quite windy. I was not sure how those three things would mix with two 2 year olds who were a little crankier than normal today.

It turned out to be a perfect night for the beach. There was a light breeze blowing in off the lake and the temperature was perfect. The water was 72 degrees and comfortable for splashing in. We ate a little picnic along the channel where the kids could watch the boats and then we headed down to the lake.

Lily was in the water within seconds. Wyatt was much more cautious, but definitely enjoyed digging in the sand. He did eventually allow his toes to get wet, but for the most part he stayed dry. They both enjoyed the ice cream that we stopped for on the way home (so did the rest of us).

For Good

For Good from the musical "Wicked"

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you:

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend:

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you:
I have been changed for good

The lyrics to this song always remind me of Ryan when I hear them. The words seem so true, he definitely changed my life -- for good.

This is the necklace that I had made to honor Ryan.

Continued Blessings

I am so grateful to our God. He continues to bless me in my grief. God has provided so many wonderful people who love us and support us on a daily basis:

My parents are so great with all the different ways they help: babysitting, having us over for meals, helping with little things around the house, coming over to do baths, just being here...

Our Pointe Group from church continues to support us as well: help with kids at church, Pointe Group meetings and gatherings; play dates at the park; having us over for dinner; calling to chat....

Friends and Family near and far: continued prayers and cards of support, visits to the kids and I (Val is coming today -- yeah!), calls and emails...

I have also received support from people who have lost their spouses, one who actually lost her husband to CF when her daughter was just 2 1/2...isn't God amazing!, as well as a friend from Illinois who lost her husband to cancer when her kids were young.

Thank you, God, for continuing to love me. Thank you to everyone who has been His hands and feet in our lives.

God said, "No"

I asked God to take away my habit.

God said, No.

It is not for me to take away, but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary.

I asked God to grant me patience.

God said, No.
Patience is a byproduct of tribulations; it isn't granted, it is learned.

I asked God to give me happiness.

God said, No.

I give you blessings; happiness is up to you.

I asked God to spare me pain.

God said, No.
Suffering draws you apart from worldly cares and brings you closer to me.

I asked God to make my spirit grow.

God said, No.
You must grow on your own, but I will prune you to make you fruitful.

I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.

I asked God to help me LOVE others, as much as He loves me.
God said...Ahhhh, finally you have the idea.

I was sent this poem in an email and I thought that the message was a great reminder of God's love for us. He does not always give us what we ask for, because what we ask for is not always what we need.

Hard and Getting Harder

No prayers is ever lost, or any prayer ever breathed in vain. There is no such thing as prayer unanswered or unnoticed by God, and some things we see as refusals or denials are simply delays. Horatius Bonar

It has now been 5 weeks since Ryan died. I think that the numbness has worn off and the full effects of his death are starting to hit -- hard! I miss him so much, especially in the down times of the day. It seems as each thing in my life is a reminder of him, even if it something new or something he would not have done or participated in anyway. I think the first few weeks were easier than I thought because I was used to him being gone in the hospital. Sometimes it still feels like that, but then I "remember" that he isn't coming home. Lily and Wyatt are a good distraction, but they usually ask for Daddy or talk about Daddy a hundred times a day.

I have been reading about other CFer's who have recently gotten their lungs and I wonder "why not Ryan too?" I would NEVER want to take their lungs from them, but I just wish that I could see what God sees. I know that I only see one puzzle piece in all the millions of pieces that are there, but I just wish that piece held more understanding. I wish I could wrap my mind around why we didn't get more time together.

Fun with Friends

My friend, Kandy, and her son, Jackson, were here visiting from Illinois for a few days. It was so nice to have them here (and to have some adult company)! The kids did well playing together for the most part, and everyone slept well. :) I am so thankful for wonderful friends who are helping us as we continue our new journey.

Great Strides -- Sweeney Striders

This post is coming about 9 months early, but I want to get the word out. Next May I am hoping to walk in the Great Strides walk. I have walked two other times in a Great Strides walk, but then we had Lily and Wyatt and life got busy. (GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fund-raising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2007, more than $34 million was raised to support vital CF programs.)

Even though I no longer fight CF daily, I want to make sure that others have the best resources to fight CF and hopefully research can continue to find a cure. Cystic Fibrosis is a horrible disease and I pray that God will give doctors wisdom to find cure -- SOON!

Please consider joining me in a Great Strides walk in spring of 2009. I haven't decided if I am going to walk in a local Great Strides walk or if I will participate in one in either Chicago or Ann Arbor. You can also think about walking at a site close to your home if you aren't near here. Sweeney Striders are going to be back to honor Ryan's memory!

Summer Fun

1 Month

Today it has been one month since Ryan left this earth for heaven. I laid in bed this morning thinking about all the emotions that I was going through that morning. I watched the clock and thought about what I was doing at that specific time just one month ago. I thought about each of my last moments with Ryan. I still wonder why he was not meant to get his new lungs here on earth, but I know that one day I will have my answers. I just continue to pray that God will use Ryan to change people's lives.

I often wonder how I am going to get through this; how I am going to raise our children; how I will just do life without Ryan by my side. There is only one answer to all of my questions and that is: God. He continues to bless me and sustain me each and every day. He has provided so many HUGE blessings for the kids and I in the past month. I wanted to share some with you so that you can praise him along with me. May He be given all the glory for the great things he has done:

• wonderful family and friends who have continued to support me each day
• a church family that has gone above and beyond to meet all the needs of our family
• Ryan's work helping with all the details in the financial realm (and beyond)
• medical bills -- we really have NONE (at this point) which is a miracle!
• Ryan's car selling in less than 24 hours
• life insurance coming through without any complications when there "really" should have been
• medical insurance for the kids and I at affordable rates
• financial support from so many thoughtful and generous people
• strength for each day through the transitions and adjustments to life

Thank you to those who have continued to lift us up in prayer and support us in so many other ways. God has truly blessed my life through all of you during this hard time.

The Story of Us

Ryan and I began our journey as husband and wife 5 years ago today. Our journey was cut short, but it was filled with many happy memories and an abundance of blessings. I miss Ryan so much, but I am thankful for the time we had together, for the beautiful children God blessed us with, and for the way Ryan helped me to become a better person.

Make video montages at www.OneTrueMedia.com

(We were married at The Evangelical Free Church of Crystal Lake, in Crystal Lake, IL. We went to Maui, Hawaii for our honeymoon. The song playing in the slideshow is from the movie "Love Actually".)

**To hear the slideshow music, scroll to the bottom of the blog and pause the blog music.**

4th of July Pics

Here are our pictures from our busy day.

The kids did great at the parade, although they wouldn't sit at the curb. Lily was very excited about the "neighs" and the baby "neighs" (horses). Wyatt liked the fire trucks as long as they were quiet. There was even a bus in the parade, which happens to be Wyatt's vehicle of choice these days. You will also notice some Star Wars characters in the pictures; not sure what that was all about so I thought I would include it for viewing pleasure.

We had fun at the cookout too, although Lily and Wyatt were a little leery of the "woof, woof" (dogs). Wyatt actually pet one of the dogs, but Lily would not even get on the ground if they were outside.

Hope you all had a great 4th!

Happy 4th of July!

Happy 4th of July to everyone!

I have always enjoyed the 4th and hopefully today will be no different. Grandpa Steve is coming to hang out with us for a couple of days, which Lily and Wyatt are excited about (me too). We will be heading to the parade in Grandville. It is the parade I grew up going to and Lily and Wyatt have actually been there every year of their lives too! Yesterday they kept telling me we were going to see: horses, fire trucks, dogs, and lawn mowers. I am not sure about lawn mowers, but Lily is convinced of it. :) After naps, we are going to my aunts house for a cookout. Hopefully I will have pics to post later.

Ryan really enjoyed the 4th too. He was always wanting to honor the veterans of our country and was so thankful for the freedom we have in this country.

Side note: On our first date Ryan told me that when he got married he wanted to get married on an important historical day so that he could remember his anniversary :) He never forgot our anniversary, but we did miss the 4th by one day. :)

Hope for CF

Even though Ryan lost his battle against CF, it is still very real in the lives of so many. As Scott said at Ryan's Celebration of Life service, "Ryan might not have beat CF, but he gave it one of the worst beatings it has every seen."

You can watch the following video to try and better understand what life for a CFer is all about. Many of the things that these people describe is what Ryan dealt with every day.



Siobhan Ryan - the lady in the video talking about being near the end passed away on June 24. You can read about her here: http://www.legacy.com/FRESNOBEE/Obituaries.asp?Page=LifeStory&PersonID=112565526


More information can also be found at www.cff.org. Please also consider organ donation if you have not already done so; there are so many people waiting.