Friday, December 31, 2010

Peter's up. He's been screaming on and off for a few hours now. I'm tired and just want to go to bed. He has other plans. He doesn't seem gassy anymore but he's still agitated. He's "talked" a few times now. Making those sweet cooing sounds. He then launches into a full on roar. He's fed. He's clean. Sigh.

I actually burst a blood vessel in my eye. Due to crying or lack of sleep or stress... it's hard to tell which.

Man, its so easy to overlook the importance of sleep until you're not getting enough.

The other day Peter murmured, "agooo." Libby freaked out. "Mommy, did you hear that? He said his first words... "Agoo". Can you believe it?!"

She gets thrilled over his every little move. I love it. She's been such a big helper. She's quick to give him his passy when he's fussy. She talks to him in sweet tones. She helps me gather the shoes for the twins. She fetches a new shirt when oatmeal is adhered to clothing from breakfast.

Days are long, wild, crazy and bizarre... but never dull.

He's still fussing. What the heck? Doesn't he know i have to get up and face the day with many other children beside him? Nope.

Well, at least I got a shower today.

Wednesday, December 29, 2010

Okay, I want to post this on caring bridge... but the site has been spazzing out on me... so until I can post on it...

"Samuel had his old CVL taken out. He came home in the afternoon on Christmas Eve. We enjoyed Christmas at home as a family. It was a good day.

Samuel went to the Clinic on Tuesday. It was a much longer day than normal. It wasn't a lot to be done but there were a lot of people so it took longer than usual.

Samuels back in the hospital. He had surgery today and had a new CVL put in. Mike said Samuel was really unhappy after surgery but bounced back later and ate 3 bags of chips tonight! Yay!

He is able to get chemo so he will start tonight. he will be in through the week-end and on Monday they will do a CT scan and do a radiation simulation as well. It will be interesting to see how it all plays out."
Most days I think, Hm, that would be good to post on my blog... but I never get a moment to do it. Maybe it's a philosophical thought on life or a great quote from a book I'm reading or something cute the kids said. Or maybe it's major like surgery or whatever... the point is I can't keep up. I'm trying... and failing miserably.

even now i'm interrupted... peter has been crying most of the night...

i barely have a moment to think, much less express my thoughts.

“A Chinese proverb i like is, The best time to plant a tree is twenty years ago. The second best time is now.”

There are so many what ifs and if onlys I struggle with. I beat myself up over things I have done or didn't do in my past. But the point is the moment. The moment is now. How am I choosing to live my life right now. Instead of beating myself up over things I've not been able to do I want to focus on the good changes that are happening and I see.

Things have been tense between Mike and I. We're both stressed out and exhausted and we have different personalities. Add many children, some of whom have very special needs. So there has been an increase in conflict... naturally :) But the good thing is we're working on resolving things faster, trying to communicate better, listening to each other and truly hearing the other, and asking for forgiveness quickly. Does it mean we don't have heated arguments still? No. They are definitely present... but I also see the Lord working in us.

I am blessed to have a husband like Mike. He lays down his life continuously for me and the kids. On days when he's home he will often let me get some extra sleep. He's willing to change diapers, throw in a load of laundry, do dishes, feed and bathe the kids, pick out clothes and dress the kids. He's no perfect. He has his faults. BUT I love him and am thankful for him.

I have an issue where I hold onto guilt for things I shouldn't feel guilt over. I get upset if I don't get thank you notes written and sent out. Or beating myself up for not cleaning out the car. I don't like my limitations... I wish I could be a room mom and school and help plan parties for the kids classes, etc. I would love to write long extensive thoughts into a journal.

Basically when you dig down deep what you will see is someone who strives for perfection. I want things to be just so. Everything should be in place and perfect. I need to be as efficient as possible. I can't make mistakes. I stress over silly things.

And once again God is stripping me of my perfectionism.... and showing me my desire for control. He is lovingly reminding me that I am just one person and I can't do it all nor can I be all. He's faithfully helping me to trust Him... and that in my weakness He is strong. That still baffles me. So I trust... and I hope. I ask God to keep me in his palm. I'm asking Him to help me let go of the things that aren't from Him. False guilt and condemnation. Hopelessness and despair. I can only do that which is set before me and no more.

I can't keep up with all the laundry, dishes, house chores, the tasks for school, appointments for doctors, dentists, etc. All the paperwork and bills... and the list goes on.

As I was recently reminded, my day was a success because my kids were fed, clothed, meds given and alive. It's a good day. All the rest is icing on the cake.

So yeah, for now I'm not titling my posts and I don't have labels going on at the end of my post... and it's okay.

My room is a mess. It's strewn with wrapping paper and tissue and boxes and bags. My dresser is broken and so my clothes are in boxes. In the laundry room there are clean clothes in baskets waiting to be folded.... and piles more waiting to be washed. A bag of trash sits on my side of the bed.

The kitchen is full of dishes. There are crumbs and dirt and goldfish and graham crackers and spilled milk in most every carpet and crevice. The kitchen floor is filthy. The playroom is a mess. The dining room is covered in an assortment of leftover breakfast dishes from this morning...

Anyway, you get the picture.

The point is it's okay. My hope doesn't lie in those things. My approval doesn't lie in those things. My worth doesn't lie in those things. It doesn't come from outside... not my appearance or that of my home or my husband or my children. It doesn't come from my circumstances. It comes from Jesus. He is the One who knows the heart... He sees into my soul. He gently is reminding me that He is enough. He loves me and has a plan for me. Even in the midst of this craziness and chaos... over the tears, the messes, the disappointments, the overwhelming, crushing schedule and life full of friction, tension, and discouragement... He is there. He promises to never leave or forsake me and I hold onto that. I hold onto the fact that He is my Saviour... He is my Redeemer. He lives... He has and will continue to finish His good work in me... He will restore me. He will heal me. He will bind up the brokenhearted...

So as I weep tonight, clutching a screaming infant I hold onto Him. I cling to His promises. I know I'm the closest to Hell that I will ever be... and I have the hope of Heaven to look forward to.

I'm letting go of my unrealistic expectations. I'm breaking free of the image of a perfect life and having it all together. I'm trying to rejoice and be grateful for all the little things and big things He has given me and provided for me. I am so blessed.

Am I scared and fearful at times? Of course. Do I battle anxiety? Definitely. But I'm holding onto Him. and I know He will never let me go...

Thursday, December 23, 2010

The clot has resolved itself. Samuel had his CVL taken out and has a medport temporarily installed in his arm. We're hoping to get him home tomorrow... Mike warned me that the doctors would prefer to keep him in because he needs a lot of stuff done medically but they understand that it's Christmas.

We'd rather be busy at home with him though than separated and in the hospital. Pray that God will help us. We'll be giving him multiple shots daily in his "love handles"... the kids has no fat... Oh I hate shots! Poor baby.

Libby and I frosted cookies with my grandmother today. It was a fun tradition.

I was blessed to have friends from church come clean the house... thank you Lori and Elaine. What a blessing.

My Dad's staying at the hospital tonight so Mike can come home! Yay. So much we need to talk about but we're both too exhausted.... so a movie perhaps instead. Sometimes you just need to relax and unwind....

Took some cute pics of Peter today... will post them soon.

Hoping tomorrow comes off without a hitch.... Missing Samuel so bad!!!

Tuesday, December 21, 2010

Samuel's OR experience today.

Samuel's CVL was supposed to come out today. Unfortunately when he was in the O.R. they did an EKG and saw that he had a clot at the end of his line (which is near his heart). So they stopped everything. He's going to be on anti-coagulants for a couple days and then they will try and do a repeat of the procedure. So he will be in until at least Christmas Eve. This is scary and also disappointing. We had hoped he would be home tomorrow...

So God willing this will work on Thursday and he'll come home on Friday. Next week he will get a new CVL line put in. We will see. So much going on.

Radiation is supposed to start Jan. 12th but it might get delayed if we can't get this 5 day chemo treatment done and then all his evaluation work: CT scan, MRI, bone scan, etc.

So there's the latest on Samuel
Television and internet capabilities are dangerous things.

When I was in the hospital, oh, one of my many occasions for pre-term labor with Peter, I was watching tv. Sounds innocent enough. Well, when it's 3 in the morning... scary things are on. Like ads for Body Shapers. Sunglasses with cool tints.... and YUDU's. What is a Yudu... you might be asking... let me tell you... it's something I totally want... but don't need. It's this really cool personal screen printing system. I'm into it. So anyway... I didn't do anything crazy last night... I just looked it up online and stared at it and got lost in all my potential amazing designs of crafting that would come about from this amazing invention....

Libby's been learning the differences between wants and needs. For homework the other night she had to fill in these blanks:

I need ______________________.

I want ______________________.

Hmmm. She filled in the following:

I need shelter.

I want lollipops.

Oh the sweetness of being 6. My problem is I want a lot. A lot that I don't need. There's so much cool stuff that you never knew you needed until you went online or saw it on TV or browsed around Target.

I'm trying to learn to be content and ask God what my needs truly are. I know He's meeting them. I have food. A bed to sleep in. Clean water. Hot & cold water. Clothes. Etc.

But I have so much more than that... a car... and not just one even! A laptop. A cell phone. Multiple pairs of shoes, shirts, pants, sweaters. I have lotion and perfume and stationary and enough scrapbooking supplies to scrap the world :) I get treats at Starbucks. I have an amazing bed- comfortable and king size... plenty of room to snuggle with all my children. I have a fantastic husband and 5 incredible kids. And above all that I have a Savior who died for my sins so I could be restored, renewed & remade. I have Jesus to look forward to in Heaven and I have His Spirit here who won't leave or forsake me, who comforts and guides me and directs me.

I have so much to be thankful for.

So that being said I'm a little sad about my camera... it's dying. It's on it's last leg. At first it was a lens issue but now it won't take pictures every time. The flash won't work. The images are blurred and distorted. Oh dear. I've loved this camera. I bought it in memory of my sister. I've enjoyed it so much.... but it's at it's end. So I'm looking for a camera... nothing too pricey... but something that will let me record these moments with my precious kids. But it's not a need, it's a want.

Also, don't be online mindlessly you can get sucked in so quickly to wanting to buy stuff. Thank goodness I didn't...but I really wanted too! :)

May you realize how blessed you are... and may God meet all your needs!

Monday, December 20, 2010

Piglet sidled up to Pooh from behind. "Pooh!" he whispered. "Yes, Piglet?" "Nothing," said Piglet, taking Pooh's paw. "I just wanted to be sure of you." ~A.A. Milne
Um, is anyone reading my blog? Just wondering....

Sunday, December 19, 2010

Saturday, December 18, 2010

So they think the infection Samuel has came from his CVL. This means that they are monitoring it. If it hasn't cleared in the next 48 hours we will have to replace it.... surgery. Yuck.

Samuel's oncologist still hopes to start chemo on Monday... which means he will be until Christmas Eve and possibly Christmas. That's the plan if his CVL doesn't have to be replaced. Crazy.

Mike just called and said Samuels been moved back to the cancer floor. He's out of the ICU. His fever broke this morning.

Friday, December 17, 2010

So today starts a five day admission for Samuel... so we thought.

I took Samuel in to the clinic. His blood levels looked good so he was getting admitted. In the afternoon he started throwing up. He started crying a lot. He felt warm. Then he felt hot. He spiked a fever. He started shivering and his teeth began to chatter. He was getting chills. His fever was 104.

Turns out he has tested positive for "negative gram infection." The problem is it gets worse before it gets better. Samuel was on the 8th floor (oncology) but now is being transferred to the PICU (pediatric intensive care unit). He needs his blood pressure stabilized.

He is NOT getting chemo right now. The problem? When will he be able to start? He might need to stay in the hospital past Christmas. It's disappointing. On top of which, I'm struggling with anxiety. I hate ICU's. so many bad memories.

So please pray for his body to fight this infection. We are tired and weary but our faithful God is sustaining us.

Peter has been really challenging at night lately. I've really been having a hard time in general and covet your prayers. Thanks.
Tuesday was a typical day... a day of pure madness :)

Trying to get out the door on time I was up at 5:45 a.m. I had very little sleep that night. It's funny how you can't rush a nursing baby... I can't tell Peter... "Hey, get a move on. Eat faster." That's a good thing about babies is they slow you down. That's the hard thing about babies....they slow you down :)

Samuel had to go to radiology for an ultrasound at 8 a.m. We got there on time. He proceeded to throw up all over the waiting room. I caught some in his bucket but he needed a change of clothes... which I happened to forget on the kitchen counter. I set the bucket down because Peter was crying. Samuel then managed to trip on my purse and fall into his puke bucket. Yes, you can imagine the mess.

I cleaned him up and changed his clothes. We were called back to another waiting area and then finally to the room. He screamed during the ultrasound, of course. I finally distracted him with stickers. Then we were done... so I thought. Um, nope. His bladder wasn't full enough. They wanted him to drink 24 oz. I was trying to not laugh at them. Um, he eats through a g-tube I explained and he just threw up everywhere. Thankfully the tech and the dr. were understanding. We had to wait 15 more minutes and do a repeat scan. More screaming from Samuel.

We then went upstairs to the oncology clinic. Oh yes, a blood transfusion. It took two hours this time to get the blood he needed once ordered. They're usually really fast but it was a wait this time. Then they started the transfusion. Thankfully Mike came and relieved me. I went to the store to make a return. I was dragging really badly by this time so I thought it best to get a coffee... a gingerbread latte to be exact. I took a sip, it was delicious.

As I'm standing in line at Target waiting I happen to look for my coffee to take a sip. The cup was completely upside down and my coffee had spilled everywhere. I was disappointed, frustrated, tired, and just plain done.

So, that was a typical day.

Sunday, December 12, 2010

Wow. It's been a while since I've posted. I took Michael to the doctors almost two weeks ago. They put him on oral steroids and antibiotics. It's seemed to help a little bit. Samuel had surgery on December 3rd. It went well and was very smooth. He was then kept inpatient for chemo for a couple days. I was able to take him to clinic this past Friday for the first time. I had Peter with me as well and I think things went rather well all in all.

My sister's birthday was the 7th. She would have been 28. I had a good day. Well, it started off with major tooth pain so I ended up at the dentists and found out I needed a root canal. I was given a prescription for antibiotics and vicatin. I got to have time with my Mom that day as well as time with my dear cousin Sharon. I also had a few friends over that evening. Sometimes it's hard on special anniversary dates to not feel pressure to make it super special and significant somehow.

(BTW- if this isn't making sense it's because it's almost 1 a.m.)

I feel pressured that I have to grieve perfectly and that it all has to be contained to Dec. 7th (her birthday) and March 7th (her death date). That really isn't fun. And it's hard when there are some days that I'm just sad and miss her... I feel like I can't. Like I'm just limited to two days a year. I don't know if that makes sense.

Today was another day of special tradition... making Christmas floral centerpieces with my Mom, Aunt, and cousin. My Mom, Libby, Peter and I drove down to North Carolina. It's so fun putting together the centerpieces. It's one of my highlights over the holiday season. I also love just getting to spend time as family. Libby was enthralled to play with my cousins children... so fun :)

The Oncology Department had a special date night for the parents. We went to a Japanese restaurant for a Hibachi meal. I had filet mignon. Peter did great and slept the entire dinner. It was really fun to enjoy a delicious and free meal :) Cancer might stink but the Oncology Dept. at CHKD tries to make it better :) I'm really thankful for the staff there.

Well, of course much more is going on... Samuel might get a blood transfusion on Tuesday or they might wait until his admission during the week-end. We'll see.

Will write again when I'm not so tired.