Thursday, April 28, 2011

When Do You Let Go and Just Let God?

I'd be lying if I said the past year hasn't been hard.

I think we all know someone that has cancer, has died from cancer, or is a survivor of cancer.

But when that someone is in your family, it hits home. When that someone is your dad, it breaks your heart.

I've never had someone this close to me have a terminal disease. I've never put so much effort into trying to do whatever I could to keep the word terminal out of the picture.

When I found out just a little over a year ago that my dad had melanoma, I immediately threw myself into research mode. At the time, his melanoma wasn't even that bad or so we thought but I did this when I found out about Bennett having Down syndrome too.

I do this with everything in life. I try to take total control over the situation because that's where I feel most comfortable.

Night after night, I researched drugs, clinical trials, read blogs, joined forums, anything I could do to try and help my dad. I had such a strong hold on my dad's melanoma that I felt if I didn't tell my mom about this trial or this drug that his disease would progress. As if I had control over it.

Of course I prayed but I still had not given my dad's cancer to God, for Him to handle. I wanted to clutch it tightly because I had put so much effort into trying to help my dad find the best options to beat it.

Not a day went by that melanoma didn't cross my mind.

I hate it. I hate it so much. I hate what it's done to my dad. I hate that my dad is in pain. I hate that he is now in a wheelchair because of these damn melanomas that have spread throughout his body. I hate that my mom has to watch her husband endure painful surgeries, battle through treatments, take drugs that make him feel worse. I hate that my parents have been told bad news time and time again. I hate that my girls know their granddaddy has melanoma and that it just won't go away.

Hate is a strong word and I rarely use it but I HATE MELANOMA.

Things aren't good right now. My dad is not doing good. By no means have I given up trying to help my dad and I don't believe he has given up either but I've finally come to realize that it's time to let go, let go of the grip I've had on this disease and let God take it. As much as I want to, I can't stop it.

My dad is in the hospital right now. This wasn't planned. We were hoping that he would start a new treatment but this disease is rapidly trying to take over. I will be going to see him this weekend with my sister and we could use your prayers. My mom could use your prayers. My dad could use your prayers.

Sometimes it's hard to know when to let go of the control that you think you have and to just hand it over but I think when the time comes, you just know. You probably should have never tried to hold onto it so tightly in the first place.

I love you dad. I wish I could make it all better like you've always tried to do for me.
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Wednesday, April 27, 2011

Good Quality Daddy Time...

Swim lessons for the kids wrapped up last week and while I was out of town, as well as this past weekend, Mike went in with Bennett for his lesson. I have to say, it was so much fun to watch these two! Since Mike works long days, I take Bennett to all of his therapies and I'm with him all of the time, like most stay at home moms. But it's really nice to see the bond Bennett and Mike have.

Mike is like most dads with his son, rough and tumble, often scares me when he plays with him;) and of course he is not nearly as concerned as I am about getting Bennett's ears and well, whole head wet during the lessons.

I got some really cute shots of the two of them though...

He may be a momma's boy but he does love his daddy.

Some how Mike got Bennett to like the noodle...he usually hates the noodle!

He clearly loves being thrown up in the air!

What I love about this picture is that I can see that Mike is so proud of Bennett. I know he is. He loves Bennett just the way he is. I think know they are blessed to have each other;)

Sunday, April 24, 2011

There's Just Something About...

...little girls in pastel dresses and little boys in button downs and ties.

Flowers are blooming, grass is green, birds are chirping.


Oh how I love dressing the kids up for Easter Sunday! And when it's actually warm, it really makes me happy!

We had a nice Easter this year. I had a little dress malfunction right before church which forced me to wear the same dress from last year but we're going to move on from that;)

The kids have been hunting for eggs for about a month now so to finally hunt for their Easter basket on Sunday was a huge thrill for them.

Church was wonderful and I've been trying to explain to the girls why we REALLY celebrate Easter. Ainsley gets it {kind of} but Harper is thoroughly confused. The other night while she was saying her prayers she said "Please let Jesus, help God, help the Easter Bunny go to Heaven, Amen" LOL.

Our good friends Keith and Ginger came to church with us. They're always so photogenic!

Mike with his "buddy".

I love my boys.

Later on we went to a friends house and had an awesome Easter dinner. All the kids continued to hunt for eggs and Bennett enjoyed the swing...

And who doesn't enjoy some cute swing pics?

My happy boy.

There's just something about Easter.

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Monday, April 18, 2011

My Crazy Week.

Last week was a blur. I don't think I've ever had a more packed week with so many important things going on. I won't bore you with ALL of the details but it involved:
  • Mike being out of town
  • Anxiously waiting to hear news about my dad's trial and then finding out BAD news
  • Mike having a very important meeting for his job
  • Ainsley having surgery {large mole removed, went well but she has to come back to get more off in a few months}
  • Dentist appointments for all 3 kids at the same time {Bennett had his first dentist appt.!}
  • Deciding to fly to Nashville at the last minute to see my dad
  • Flying alone kinda scares me {horrible turbulence on one of the flights} and I had to rent a car which I've never done...I survived.
  • Ainsley getting ready for her little surgery.

Bennett BEFORE the dentist checked and cleaned his teeth...let's just say Bennett wasn't happy {at all} about the cleaning.

So my dad...he could use some prayers. Things aren't good but they've got a plan. I'm so glad I went out there to see my parents though. Hopefully I was a help to them rather than a stressor.

They are staying at the Hope Lodge which is a wonderful place where cancer patients and their families can stay for free. It is super helpful for patients that have to go back and forth to the hospital for treatment. My parents are grateful for it and my mom told me that much of the money raised for the Relays for Life that go on all around the country go to these Hope Lodges. The Hope Lodge in Nashville is the biggest in the country and was very nice.

I know my mom and dad are so appreciative of my mom's sister Peggy and her husband Tom for driving them to Nashville last week. As well as for my cousin Gary and his wife Ellen for opening up their home. My parents did no plan on staying, the plan was to pick up more trial medicine and head back the next day but that didn't happen. So a huge thanks to everyone that has helped my parents, whether it be driving them, feeding them, watching their animals, getting their mail, helping with their yard. It's all so appreciative. Cancer can turn your world upside down and to have people try and make your life as normal as possible, it's truly a godsend.

This week the plan is for my dad to have gamma knife radiation to his brain. After that is taken care of, they will hopefully get put back on a trial. The doctors are not ready to "throw in the towel" and neither is my dad. Melanoma is extremely difficult to treat at this stage but the doctors that are working with my dad are experts in this disease so we're hoping and praying they can find the drug that is going to stop this cancer. But ultimately it's up to the Great Physician.

As far as this week, it's going to be low key. Nothing huge going on, just waiting to hear how things go with my dad and the gamma knife.
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Wednesday, April 13, 2011

So What Do Ya'll Think??

Of my new do??

It may not look that much shorter but trust me, it is.

Yes, it still covers my ears a bit but that's just how mommy likes it. She says I have good hair and we don't want to mess with what God gave me by chopping it all off;)

Mommy tried to get a shot of the other side but I didn't want to cooperate.

Nope. Was not gonna turn my head, no sir.

But I gave her a nice front shot.

P.S. Thanks to all you nice people in blog land and in real life that reassured my mommy that I in fact do look like a boy, without question;)

Monday, April 11, 2011

Hint of Summer....

I walked into our local Pottery Barn over the weekend and fell in love with all the sea shells, sand and starfish.  Huge glass vases were filled with candles and starfish.  Everywhere I turned I saw starfish and I LOVED it.  It screamed light and airy, care free, relaxation...summer.

So I went elsewhere and purchased a few things to put here and there for all of about $10 and I don't care if it's a bit early, I'm in love with starfish now.  Yes, I still have my eggs, nests, bunnies and birds out but I just couldn't wait to put these two vases out.  They make me happy.  Plus I think it goes with the "Nantucket" feel I'm going for;)

Speaking of summer....

This was the first time these baby white legs had seen the sun this year.  Don't worry, they were covered in sunblock!

Yep, Bennett enjoyed the 84 degree day we had, crawling all over the sidewalk.

Bennett's never played with sidewalk chalk before but once I showed him what to do, he got the hang of it.

And then I thought I'd see what he would do if I put him in the grass...

Not too sure about it....but he touched it and tolerated it....and then signed "all done".  Yeah, not a big fan.

Reminds me of a picture from last summer....

My sweet little Bennett.

 He'd had enough.  We'll work on getting him used to it this summer.
By the way this little love got a much needed hair cut from his mommy.  I did it while he was taking a bath and I know you think I'm crazy for doing it in the bath but I had my reasons and it looks pretty darn good!  Hopefully no one will call him a girl now!  {I'll share pics later.}

His hair was cut after these pictures, so it's a bit shorter now but looks really cute!  I think a few thought this was the haircut!

Well since we don't get much of a spring up here in PA, I guess summer will be right around the corner;)


Wednesday, April 6, 2011

Ramblings About People Noticing Bennett...

Now that Bennett is older, people notice him more and I can tell that they look at him a little longer than what's just the normal glance at a baby.  It's most often in a checkout line and what used to be a concern of mine- "Would people notice he had Down syndrome?" is sooo not even a concern now.

I know people know.  Of course I don't care.  They can tell by looking at his eyes and you can almost pick out the people that have a soft spot for kids like Bennett by the way they interact with him.  Or how they gush over him.  Some just look and smile and others can't get over him.

But you know I've yet to get a rude comment.  From anyone really, in almost 2 years.  I'm sure it'll come some day and who knows how I'll react to it.  I think the most annoying comment I get about Bennett is that people think he's a girl!  Yes, we still have this problem, even though my boy is in a total boyish, non-cutesy outfit-people call him a girl!  Drives me crazy and I don't even know if cutting his hair would do any good!  Don't these people realize that being a child of mine, if he was a girl, I would have the biggest bow ever in his (her) hair and he'd (she'd) be covered in pink head to toe!?;)

"Aww, how old is SHE?"  "Yes, the one with the boyish hat." ;)

Another comment we get from lots of people and many times it's from children close to Bennett's age, is "Look at the baby!" or from a toddler "Baby!!"  Ha!  He's probably older than you, kid!  That's okay, Bennett is little and still looks like he's 12 months old.  Not walking probably doesn't help either.  Aah, no biggie.

I don't know, I think he looks older than that baby on the left.  However she could be 5 months old for all I know!

It's funny because I used to be so concerned about what others thought and now I just don't care.  I'm proud of my son and very confident and comfortable {most of the time} with our situation and I think people feed off of that.  Kind of like "Hello, this is who we are, this is our family and I sure hope you'll accept us just as is."  And for the most part, actually for all parts- people do.

I kind of  really like that Bennett gives a little character to our family.  We're just a bit different and that's totally okay with me.  Sure we may always be "The family with the child that has Down syndrome" to local families or it would actually and unfortunately sound more like "The family that has the kid with Downs" or "The family with the Down syndrome child".  But hopefully I can help change that;)  And hopefully Bennett can help change the way some people think about people like him as he grows up.

For now we'll just let people notice him and maybe he'll bring a smile to their face:)


Saturday, April 2, 2011

A Special Night...

                                  Our little girl got all dressed up...

in her pastel yellow dress, with little white gloves...
in all her toothless, six year old glory...

and went to her first daddy-daughter dance.
She had never really seen a corsage before...she loved it!

Such a sweet and special night for both of them:)

Friday, April 1, 2011

The Crud and random non-cruddy things...

So my oldest and my youngest have had the crud this week.

Coughing, sneezing, boogery noses {can't stand a boogery nose on a baby}, slight fevers here and there and neb treatments.  You know the deal.

No strep throat though, had them tested.  Just the crud.

So far Harper has managed to avoid it as well as Mike and I.  We'll see how long that lasts.

Bennett has actually been pleasant, he almost always is when he's sick (such a sweet little fella) but I thought this was a funny and rare picture of him looking a tad "ticked".


In other non-cruddy news, I've been busy doing more of my "mini makeovers" of rooms:  Ainsley's room and the master bedroom, as well as my small sewing area.  When I get the time, I'll share pics.  I'm very happy with the change!


And in even more exciting dad.  Not sure if I shared that my dad did get into to a clinical trial at Vanderbilt for his melanoma.  Big answered prayer!  He's been home now for a couple of weeks and sounds terrific.  He's started to lift weights and is walking for exercise again.  He says he feels good.  Seriously dad, YOU ROCK!  

My mom is doing well too, started an exercise class -she's always been into walking and taking good care of herself- but I think it's great after all they've been through this past year to carry on, and carry on even stronger!

I admire my parents sooo much.  I guess cancer has a way of bringing out a lot of sadness but it also has a way of bringing out a lot of strength, strength that you never thought you had.

Mom and dad, you are so strong!


Bennett is wanting to stand and take steps (with my help of course) more and more!  Seriously, he loves it now! He loves to practice getting into a standing position from a sitting position too.  This kid that hated bearing weight now loves standing...I love it!

So there you have it, there's some other potentially interesting things going on but those will have to wait for another day;)