Friday, July 2, 2010

Change..........Otherwise titled: The Longest Post on Record!

The month of June has flown by! I can't believe it's already July! Where did the month go? Summer is a third of the way over and we haven't even began to start it! I guess this is what happens.....time flies by, with lots going on and we forget to just be in the moment.

I do this blog for several reasons.

1) I like to "capture" our life, since it seems to fly by. I want to share what is going on in our life with family and friends, because since life continues to fly by and unfortunately I don't have the time or don't make the time to call them and chat about things, this is a great way to share our experiences with them.

2) I appreciate the support we receive from, and the support we can give to, other families walking a similiar road. We have "met" some wonderful people on this blessed road!

3) I want to give Gavin a voice and show others that even though he isn't capable of doing much....his just being here and alive actually brings us a WHOLE LOT!

Like I said, this month has flown by and I haven't been able to share or capture things that have been going on with the VW family. So, here I go!

Joel started a new job a few weeks ago. He had been at his previous job for 11 years and felt it was time to move on. We were really quite anxious about this change. I was worried because we have 4 children, one with special needs, and I do not work outside the home. So, insurance and a paycheck are a very important thing around here! And, Joel was nervous about trying something new.

I'm happy to say that so far, everything is going great! Joel is enjoying the change and the better hours and I can see that he appears happier. Plus, even though I'm not great with change, I am seeing that this change has been a great one! We are thanking God for this opportunity and hoping that all continues to go well.


We had a very significant loss in our family last month as well. Joel's Grandpa passed away. He was 88 years old and quite the guy! Up until about 8 months ago, you never would have thought he was as old as he was! He was wrestling on the floor with our boys not too long ago and he used to drive them to school for me when Gavin was not doing very well a couple of years ago. He had so many great stories to share and he was a huge presence in our family! We miss him dearly! We miss his stories and we miss hearing him say to Gavin; "You're Grandpa's Boy!"

Here is a picture of Grandpa, Grandma and our boys:

We are very blessed to still have Grandma around though! She is quite the lady as well! Unfortunately, she is in the hospital right now and we are hoping she is able to get home soon again! We love you Grandma!!!

Here is a picture of her and the boys at Grandpa's funeral:

Here are a few more pictures from the funeral:

Here are most of the great-grandchildren singing "Jesus Loves Me" at the funeral:

Here are my handsome boys after the funeral:

And, here is Caleb being goofy with a rose from one of Grandpa's flower arrangements. Caleb is always good for a little humor!

Happy Gavin:

We sure will miss Grandpa!


While I am so very thankful for the wonderful opportunity that Make-A-Wish is giving to Gavin and our family, I can't help but feel sad about it as well. Make-A-Wish is an organization that grants wishes to children who have a life threatening illness and who's life expectancy might not be too long. I know in my mind that Gavin might not live a long life, due to his heart defects, seizure disorder, lung disease and just the fact that those with Down syndrome have a shorter life expectancy.....but in my heart I can't accept this. Having a doctor fill out paperwork for Make-A-Wish, saying that Gavin qualifies for this organization is heartbreaking to this Momma! I am thankful for this opportunity, but not at the expense of maybe having to say goodbye to Gavin too soon!

While I am sad about this truth, deep down I know that all will work out just fine! Gavin shouldn't be here today! He was written off several times by doctors and has gone though many scares.....but he is here today! According to doctors, Gavin should have died at 3 months of age, 4 months of age, 5 months of age, 6 months of age and 7 months of age! HMMM.....he's still here! And, he is doing fantastically for Gavin! So, I'm going to try hard to dismiss these sad thoughts from my mind and trust that God knows more than doctors do and that He has the future already planned for Gavin and I. Only He knows the future and He will carry us through whatever the future holds!

As for making a wish....this is a difficult thing to decide! Gavin can't tell us what he would want. In fact, Gavin probably has all that he wants and needs! He is a happy boy, who loves to be held, talked to, sung to and played with.....his needs are met! But, I can think of a couple of things that might make him happy. He loves music, so a trip to Disney would be nice because there is a lot of music played there!

I was really hoping that we could have a 3 season porch added to our house, because Gavin doesn't tolerate heat like most of us can, plus he burns easily, etc......but he loves to be by his brothers and listening to them play and have fun this would have been great for him....but they do not do home renovations, so this wish is out.

Another thought that I had was an RV trip across America to visit some of our blogging buddies! I think that Gavin would love this and I know that I would too! So, who knows? Maybe we'll really get to meet some of you some day! :)



We went to the pulmonologist this week and Gavin and I might be seeing less of a "friend" of ours very soon!

This is his nebulizer machine:

This machine has been a "friend" of ours for so long! He and I, and sometimes Daddy, used to spend 3 times a day together with this machine. The last several months we have only had to spend 2 times a day together, but now......we only have to spend one time a day together! (As long as Gavin does well with this change!) This is great news! This means that Gavin's lungs are healing and that he is doing really well! YAY!

The crazy thing is, he and I have spent so much time doing nebs the last 3 years, that I don't know what to do with this extra time and I keep thinking that I have to do nebs with Gavin all day long! I'm not complaining though! This is one change that I will surely embrace!

"My son, fear the Lord and the king; do not associate with those given to change; for their calamity will rise suddenly, and who knows the ruin those two can bring?" Proverbs 24:21-22


Debbie said...

I have several comments...

first off, the pic of Gavin on grandpa's lap...Oh my, the glasses and the 2 of them...looks like Grandpa's mini me! So Cute!

I haven't gone all...and I know H would be granted I am sure BUT my mommy head and heart is not ready for a "wish" I think the only wish I can fathom is a healing miracle for my boy..which only God can give us.

As for your little warrior who defys all odds...
well Gavin is in the hands of the Greatest Physician of all, and with Jesus walking with our boys...anything is possible...He has such big plans for these boys and is using them in ways that are so much bigger than us.

Hope your summer slows down and you take time to enjoy it before the leaves start to fall! ;)

Love to you my friend...and if you do wish to RV around the country...would love to see your family in WA!!!

Heather said...

Can I say how cute Gavin looks in his big guy tie?So handsome.

Life is flying by.I think I notice it more as I am raising this "second set",later in my life.I often feel like I want to freeze frame moments but know I can't, as there are more amazing moments waiting for us.

Uncertain moments yes,especially where our fragile littlest ones are concerned,but If I try and focus on the fragility of ALL our lives and turn my head and my heart to how we are instructed by God to live all of our moments to the fullest,then I am easily able to push the fear to the wayside.

You will know when you have found the perfect thing for Gavin's Wish.We did.It all just seemed right when we finally put it on paper.As for the camper... no go on that I am afraid also,as great as that would be to have you travel to visit us all,Make A Wish doesn't to cars,boats,motor homes,none of that.Bummer,uh?

Have a happy and safe 4th of July!

Becky said...

I'm excited to hear what you guys decided to do for Make-A-Wish. It's definitely a bitter-sweet thing. Sorry to hear about Grandpa. It's never an easy thing to love someone you love. Thankfully he's in a better place. thinking of you!

Hope said...

Gavin is so handsome in his tie! Yay for less nebs and healthier lungs! That is always great news. I love the pictures, like always. I'm so sorry about your loss. ((Hugs))

Tiffany said...

After reading all of that going on there is so much to say, yet I will make it as short as I can because you don't need a comment that is longer than your post. :)

I'm sorry about Grandpa. But what a wonderful thing that he was able to know and embrace Gavin and your other boys while he was still here. And what wonderful pictures you have to remember him by.

Yeah, for the nebulizer. I can imagine that it will really free up your time and also what a great thing it is saying if he doesn't need it anymore. So, keep it up tough guy and continue to show those doctors how strong you are!

All of your choices seem like great ideas for Make-a-Wish. Too bad the 4 seasons room wouldn't work. That sounded like a great idea. Can't wait to hear what you decide.

Michelle said...

Alicia, I'm so sorry for the loss of Grandpa. Praying you are healing. So thankful that you can kiss those nebs goodbye a litte at a time...I am with you there!! Disney would be a GREAT trip for all of you, BUT, I wouldn't mind being a stop on the road trip either...:).

stephanie said...

Alicia!!! No fair making me cry first thing in the morning! I'm so sorry to hear about the loss of Grandpa. He and Grandma look like a super pair.

Gavin is a mighty man! I love how he just does his thing regardless of what the docs have said. You are all deserving of the Make a Wish. i know the reason is unnerving but if you can dismiss that and just think of it as a reward for proving the medical professionals wrong it might be easier.

yeah for Joel and the new job. My hubby recently made a change too. it's stressful but it was a good thing.

thanks for the update! now lets enjoy the rest of the summer!! It sure does fly by!

Annette Gysen said...

I hope Joel's new job is going well. It's hard to start something new, even when the change is for the better. I can relate!

I was so sorry to hear about Mr. P. I hadn't realized that he was failing. He was always so sweet and cheery. I'm sure you all are missing him.

Sounds like some great options for Make a Wish. Can't wait to hear what you pick! And way to go on the nebulizer! Yay!

Jenkins said...

Your boys certainly brought smiles to the funeral of their Grandpa and love to the family and friends.

Happy to hear about the job. My husband was about the venture out on his own (with a couple of others) to start up a new business but with insurance as a serious necessity and a steady pay check, that is on the back burner. I makes me sweat just thinking about it.

And Make a Wish, oh I have the same thoughts and a draft blog that I started writing about it. We have not been given an amount of time for Brayden (nor have we asked) but everyone treats as though time is quality of life discussions, nominating him for Make a Wish...

Sounds like you house is busy but with all boys it always will be!

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