Monday, February 28, 2011

Sick Children.

Oh dear. The kids have been really sick. I think, for the most part, they are on the mend. Michael went to the doctor's office on Tuesday night and was diagnosed with viral croup. He was also given dexadron (sp?), a powerful one time oral steroid. Michael then proceeded to have fevers and start his "barking seal" cough for the rest of the week. Friday I was back in with Michael and Peter... Peter has viral bronchialitis. Michael got an oral steroid and another round of antibiotics.

Ian's recently started coughing and wheezing.

What is going on?

We are finally letting him go back to school tomorrow. He missed his optometry appointment today. Just another thing to reschedule...

So much happening all the time around here.

Mike and I are trying to coordinate who goes where and needs to be where when for this week. He and Samuel start admission tomorrow.

Well, it's that time of year. March is upon us... I'm almost near my sister's death anniversary. I prefer her heaven birthday. March 7th will be 7 years. My heart hurts just thinking about it. Grief is such a strange thing.

I better get some sleep. My emotions are draining on top of everything else.

Thursday, February 24, 2011

Thank you for the wipes!

Thank you for the gas card!
Hm, it's 11 at night... What should I do? Oh another load of laundry. Yeah, that's what I do. Squeeze laundry in whenever I can.

Tomorrow morning I'm taking Michael to the doctors... or I should say back to the doctors. he went on Tuesday and they say he has viral croup but it's gotten out of control. Even with breathing treatments around the clock, his allergy meds, and Tylenol, He still has a fever, watery eyes, coughing, sneezing, and horrible asthmatic sounds.

Peter's been coughing this past week and his lungs have sounded crackly so he's going in as well.

Michael went to the ENT specialist on Tuesday morning. He had impacted wax in his ears so he got that suctioned out and had a hearing test with the audiologist. He's going to need surgery on his cleft palate again. There's an opening that leads to his nasal area that creates a wind like effect when he talks. Apparently this affects speech. So, in the next 4-6 months we'll get surgery for that. I know it's not a "big deal" in light of everything going on but it made me just want to cry when the doctor told me that.

it just feels like it never stops.

Samuel has a 5 day admission next week... probably starting Tuesday. I'm tired just thinking about it.

Well, I switched out laundry so I guess it's time to switch off the light and go to bed.

Things will look better in the morning...

Sunday, February 20, 2011

Note to Self:

Hey Self,

Don't read other people's blogs and compare your writing and talent or the lack thereof with others. Stop comparing. You don't suck. You are who you are... and that's who God made you to be. Especially do not do this late at night when you're tired and overwhelmed and disheveled and feel like a crappy Mom.

Don't start trying to become amazing and poetic and brilliant. be content. God is working in you. You don't have to sound super spiritual and amazing. Let go of your perfectionism. Stop trying so hard. Enjoy other's works and writings and be inspired, not discouraged. Keep writing.

From, Your Smarter "Older" Self.
"Peter, this is a tree. That's grass. Those are flowers." Libby loves explaining the world to her youngest brother. She tells him stories and songs and loves teaching new words.

Lately she's been drilling me about all sorts of things..."Mommy, what does this mean? Why did you say that? How do you....?" and so on.

Im so blessed to have my girl! It's a miracle with all these boys!

Want to Help?

People continue to ask how they can help... or if they can do anything... Prayer is the most important thing. So if you're praying then thank you!

Here are some additional "tangible" suggestions:

-Gas cards... always help with the cost of driving to and from CHKD as well as our other medical appointments
-Diapers or gift cards for diapers. We have four kids in diapers :)
-Diaper Cream... Specifically A&D ointment... anything WITHOUT zinc oxide... the zinc affects his radiated areas.
-Target or Wal-Mart Giftcards
-toilet paper, paper towels
-Lysol disinfecting/cleaning wipes
-Baby Wipes (sensitive/gentle)
-Lysol Disinfectant Spray

And here's a new one. Participate in our BBQ fundraiser. It's going to be on Saturday, May 14th at the Hickory Ruritan Club. Tickets will be $7.00 per person. We would love to have you join us!

Things we can barely keep up with:
-lawn care and maintenance
-car care and maintenance
-home maintenance repairs
-dental care & optometry care.
-Cleaning- particularly bathrooms, floors, and disinfecting.

Looking to borrow or buy inexpensively:
-Baby Swing
-Woman's 26" Mountain Bike & Helmet
-Toddler Bed for Michael
-A single stroller for Samuel. Looking for an "umbrella-type" that would hold up to 55 pounds. It's hard carrying him in and out of the clinic.

A huge thank you to those who have given us money & gift cards. It's been a blessing having help with expenses like gas for the car. Thank you also to the creative gifts we've received... date night gift cards for Mike and me, haircutting giftcards, clothing store gift cards, etc. Thank you for your generosity and kindness. We feel truly humbled and honored that people would help us.

God has been faithfully providing for us. We know that God will continue to do so. We trust Him to meet all our needs. Thank you for being a part of that provision.

Friday, February 18, 2011

Setting myself free...

I have been discovering lately that I have a lot of fear. Fear of losing Samuel. Fear of gaining weight. Fear of what other people think. Fear of fully living... because it means fully embracing and accepting myself as well as my reality.

One of my fears is riding a bicycle. When I was younger I was riding a bike and I hit a parked car and flew over my handlebars... that freaked me out. Not to mention I also wrecked on a motor bike with my Dad... I thought the accelerator was the brake....

Anyway, for the past several years I've been wanting a bike. I found one I wanted on Valentine's Day. But my husband is smart... instead of saying I could have the bike which I promised I would ride everyday for 90 days he said... "No. Ride your Mom's bike for a month and if you like it we will get you your own bike." I love my husband. I was disappointed but I could see the wisdom. He told me he didn't want me to feel guilty every time I walked in the garage and saw a bike I didn't ride. This makes sense.

So, on Samuel's birthday later in the afternoon I went for a bike ride. It was amazing. I had so much fun. I loved it. I fought my fear and did it anyway. The sun was setting and I got to watch it go down and I could see the moon rising. There was still a little warmth in the day but the air was cool and I felt so comfortable in my red fleece jacket. I could smell a woodfire burning. The birds were chirping and telling each other goodnight.

All that said... I can't wait to ride again. I feel sore... and it feels good. I'm getting brave.

I bought myself a present recently from Hallmark. It's a beautiful plaque I have put in the window sill. It's artsy and pretty but I love the words... just two simple words... but it's my new mantra.... "Be BRAVE". Yes. I will choose to be brave. And with God's help I CAN be brave.

Sunday, February 13, 2011

Midnight ramblings.

How is it that I could barely keep my eyes open a few hours ago but now I'm at home, in bed, and can't sleep. I'm exhausted. The last week or so has been particularly intense with very little sleep.

Remember how I mentioned in my last post the cheesecake on the bed incident. Well, I rewashed the comforter AGAIN... and a few hours later Peter had a blow out on it... poop everywhere. Sigh.

I'm tired and weary but I feel good. Mike and I had a good time today with several of the oncology parents from the clinic. It was a great opportunity to talk to others who are going through very similar things. Seeing some of these other parents having struggles like ours made me feel normal. People were talking about their kids "counts", blood transfusions, frustrations of side effects of chemo, common misunderstandings from others, and I felt so comfortable. Yep. I know what they mean. I know what they're talking about. I understand or at least I can relate.

It's funny. Mike and I were together but we didn't really get to talk. We were busy talking with others around us. I wonder if we'll ever get a moment to connect. It feels impossible. We barely even get to discuss what new meds are needed or have been given or when we're going to the clinic again... We're either apart or when we're together we're surrounded by others... usually our children.

Samuel's been pretty sick lately and in excruciating pain. The radiation has been burning his skin. It literally looks raw to the point of bleeding.... It's horrible. His whole diaper area is awful.... Thankfully we just got some special pain medicine and a special cream that is used for terrible burns. It seems to be helping. He's not screaming out the way he was.

Well, I'm ready to finally sleep. Maybe the kids will let us sleep a little longer?.... Here's hoping.

Sunday, February 06, 2011


Peter's babbling right now. He's telling me his story and adventures of today. He's also giving me"the look" like aren't you going to pick me up?

My legs are burning... they're having some weird adverse reaction to the lotion I put on. I mean it's been a few days since I've shaved my legs but they are stinging. Ouch.

There are graham cracker crumbs in my bed that Michael smashed earlier. Fun gritty feeling

I just washed our comforter today. I let it air dry. It was fresh and beautiful and I placed it on the bed. We were in bed all of 30 minutes when there was a little accident in which a beautiful piece of cheesecake covered in chocolate sauce and raspberry jam was spilled. So much for clean.

Yesterday was a wedding in the barn. My baby brother, Christopher, (who is not a baby anymore) got married. It was such a beautiful wedding. The barn walls were cloaked in black. They had trees spray painted white all around with twinkle lights draped on the branches. It was just such a magical experience. I'm so proud of my brother... He married the most amazing person. Kristin is such a dear, sweet, beautiful woman. I'm excited to have her for my sister.

The wedding went off without a hitch... in spite of my anxiety and crazy control issues :) My brother had so many people come alongside and help. It was beautiful to see how many people love and care for Christopher. They had Pizza Hut pizza at the reception... veggie trays, fruit trays, and sandwiches were also served... but it was fun and relaxed and yummy. Dancing was a blast and I think everyone had a great time.

It was fun to be in the wedding. I was the maid of honor (thank you Kristin). My cousins were in the wedding... my husband was in the wedding. Libby was the flower girl and Samuel was the ring bearer. It was really precious. Samuel shuffled down the aisle holding his blue "fuzzy" (his very special, can't-live-without blankie). Libby was very deliberate throwing a petal at a time as she meandered down the aisle.

It was a great time. It was also emotional. I can't believe how much I missed my sister. Part of me was actually angry at my sister that she wasn't there... as if she could control whether she was alive or not. That may sound weird to say... It felt weird too. I just wanted her present for my brother. I was in her wedding. She was in mine. But she's not alive. And it still feels strange that that's true. I felt that she should still be here... even though she's been gone almost 7 years.

Today though we're recovering from the busyness of this week-end as well as the weeks of being sick and all the crazy running around that's been happening.

Samuel has radiation again this week but he also has chemo EVERY DAY this week as well. Yuck. It's going to be a loooooong week. Please pray God gives Mike the strength to handle all that's going on.

The kids have been riding the bus in the morning. They have to board the bust at 6:20 a.m.! Mike has them at the end of the driveway a quarter after six. It's a long day for them as well.

So we're all exhausted and tired and weary. I know God will continue to sustain us. Sometimes I just wish we could just sleep for a week... or at least take a break from "life" for a week.

Valentine's Day is coming up... which means purchasing cards for the kid's classmates, baking treats, etc.

The CHKD oncology clinic is having a very special date night this week-end... Mike and I are going to the Melting Pot! Woo-hoo. I'm looking forward to Saturday!

Friday, February 04, 2011

Wednesday, February 02, 2011

A song I wrote today.

I'm afraid I will miss it
Afraid that time will pass
And I will be left with my mistakes and failures.

Fear of failure. Fear of success.
Fear my life will be full of regrets.
So I stay stuck inside myself
Paralyzed with indecision.

But what if I let go?
What if I dared to dream?
What if my Saviour was bigger
than any of these things?

What if He knows all I have done
and all I will do?
And what if He loves me still
What if He loves me still
in spite of who...
I am?

So I take a step of faith
And I run on in this race
And though I stumble along the way
He upholds me. He sustains.

And Someday when I see Him face to face
All those fears will melt away
All regrets and failures put aside
Because I am my Lover's
and He is mine.

Because He knows all I've done
and all I will do...
And He loves me still
He loves me still
I belong to who?
the Great I Am.
Sick in bed with the creeping crud. Maybe it's a tummy bug. Aaaaaggghhh... I thought I was over being sick.

Rehearsal is Friday. I need to get better pronto! Thankfully my friend Debi had told me what Nancy shared about Sonne's 7. It's amazing and powerful. Thank God. It's keeping me from throwing up it all.... but it's removing it via other means...

This too shall pass...

Tuesday, February 01, 2011

Ian: "I want Gum."

Me: "Ian, gum is not breakfast. First breakfast, then gum."

Ian: "First gum..."