Wednesday, September 29, 2010

700.

This is my 700th post. If I try to think of something amazing or tremendously important to write about then I'll freeze up and stop writing and think I have to wait until something incredible happens.

Samuel's pubic tube valve is still off and he seems to be wetting his diapers well enough. That's a good sign. Hopefully we'll do a bladder scan in a bit and see how it's going.

Samuel's been in a GREAT mood today. He's been playful and laughing. He walked over to the "bed" Mike and I use, it's like a built in couch of sorts. Anyway, he walked over to it with help and sat on the bed and played with Libby. It's really fun to see him be himself.

Um, the other news is we have a dog. It's mostly my brother, Christopher's, dog. But it's an indoor dog so we all have adopted it. It's an Italian Greyhound. It's brown and white and looks like a miniature deer. It's funky looking with it's long thin legs and neck but it's as sweet and as gentle as can be. We've named her Sadie. I think she's going to do our spirits good. I think she'll be wonderful for Samuel. She's a year old and probably about 7 pounds. She's full grown. She makes Michael (the smaller of the twins) look like a giant. The kids love her. She's short haired and there's no concern for allergies. She's housebroken which is a must. You should see how gentle she is with the kids.

And I have to confess. I look forward to going home and to seeing her. Yeah, she's kind of already has a place in my heart. I'll post a picture soon!

I also have an OB appointment tomorrow!

So, yeah, that's the update for now.

Tuesday, September 28, 2010

Not okay.


Last night was peaceful for Samuel. I didn't get much sleep though. I kept waking up and rolling from side to side. Okay, more like heaving myself from side to side over again and again. But otherwise all was fine.

He threw up several times this morning and was a bit groggy but he picked up in the afternoon.

There's a special time vacuum being in the hospital. The hours are sucked away and you're left wondering what day it is and if it's day or night and what is going on.

Picked up some books to read to Libby about cancer.

Feeling ready to scream. I'm just frustrated. Tired of the hospital. Tired of being apart from Mike. Tired of Samuel being in pain. Tired of feeling so helpless.

It's hard to let tension out when you can't exercise and you can't beat anyone up :)

So I'm working on "constructive" ways to release stress.

My life is overwhelming. Don't tell me it's going to be okay. Don't tell me I'm going to make it. I just need to write this out. To get my words "down on paper" and hopefully just breathe.

My days and nights blend. Our routine is ravaged. I feel guilt not being at the hospital. I feel guilt not being at home. I feel guilt for not being enough.

That's when I say, "Okay God. I surrender. You take it. You do it. You fill in the gaps. You meet the needs. I'm empty, dry and broken with nothing to offer... but you are Big, Mighty and Sustaining."

I don't know what I want. Cry? Maybe. Go to sleep. Sure, I can always use the rest. But it's this restlessness that runs deep in me. That leaves me twitching and pacing inside. It's hard to not let it consume me. And when you actually have time on your hands how do you use it? To do paperwork? To go grocery shopping? To catch up with a friend? I don't know.

I think my heart is looking for something that will satisfy. Something that tells me in the end it will all be okay. The problem is I know it's not here. I'm not THERE yet. I'm not on the other side of this. And I'm definitely not on the other side of eternity. My hope doesn't lie in my problems being solved in the here and now. It doesn't rest in a peaceful life full of health and prosperity. Nor does it come from myself. My hope comes from the Lord and the promises He's made and has promised to fulfill. The Hope of Jesus and Heaven. The Hope that THIS world is NOT my home.

Eager to be in that dwelling. But for now, while I'm here, I try to rest and trust. Try to cling to Jesus and beg Him to sustain me through His spirit. Try to let go of all my failings and imperfections. And in the end hopefully just stop trying and just be.

Monday, September 27, 2010

Some days were made for the blues. The rain has been pouring all day. Wearing my trusty red rain boots.

Did something this week... I entered the Real Simple Life Lesson Essay Contest. You're supposed to finish the sentence, "I never thought I'd..." in under 1,500 words. I wrote about Samuel and his cancer. I'd post it but I don't know if that will mean I would be disqualified. Just happy that I did it and turned it in on time.

Feeling pregnant. Going to stay the night at the hospital and be near my dear Samuel. Praying Mike will get a good nights sleep. He's very exhausted.

Bought a Snickers for dinner tonight. Yes, very healthy. Desperate times call for desperate measures.

Sunday, September 26, 2010

Hippo and hair.




I got a haircut a couple of weeks ago. I like it. It feels nice to finally do something with my hair. My last haircut was in February.

Here's my 32 weeks picture of my belly. Yes, I know. I do look a little like a hippo. Actually, this picture doesn't look that bad. it's just in real life I feel like a hippo. I'm where I was when I had the twins. I think I can make it further :)

A little mouse named Ian.



My cousin Emily stayed the night this week-end. She had an apple by her bedside when she fell asleep. When she was woken at 6:15 in the morning by Ian she found this by her bed.

When asked, "Did you do this Ian?"

He replied, "Yeah."

Wednesday, September 22, 2010

Paint

So Samuel's room is being painted today. Flooring goes in tomorrow. Excited that his room will be done. Next major project is living room and then we'll continue on from there. Home remodeling in addition to all that's going on can be a little stressful but I'm thankful for all the people who are helping and have come along side us. It's truly a team initiative. We are so blessed.

Samuel's doing his schooling right now. He loves when Miss Shannon comes and does school. He plays all sorts of educational games(numbers, letters, colors, shapes, opposites, etc.) on an ipad. He thinks it's so cool.

Hoping to have him home soon. Maybe as soon as next week.
We've got to get the pubic tubic out and then go from there.

Monday, September 20, 2010

Some great news.

Samuel's been sleeping since I got here (at CHKD). We (Mike and I) arrived around 3 or so. This morning we got a suprise call... guess what, we're going to do a CT scan TODAY! Unfortunately we weren't here when it happened but heard that it went well and he was really happy on "silly juice" (sedation medicine). Thankfully my Aunt was here at the time.

And we got the results.... Drumroll please...

His tumor has shrunk by over half! They only did an abdominal scan so we don't know about the lung but I think we're doing GREAT!

He's continuing to wet his diapers but still isn't quite back to normal. They don't want to take the tube out until they know he doesn't need it.

All in all, happy day. Hoping to talk to an oncologist about what does this mean about going home? Still have preparations to do and also have training we need... but we keep going in the right direction!

Sunday, September 19, 2010

Perspective Shift


I was thinking of all the other things going on in our lives that aren't centered around Samuel. Libby had lost her first tooth and now has a second wiggly tooth. I just got a haircut last week. I will try and post pictures soon. Michael is walking- full on walking... no holding hands or furniture... it's a sight to behold.

It's funny how your perspective shifts with something like this recent event in our life. Prior (b.c.-before cancer) I was striving so hard to get Samuel potty-trained and was so excited that we had arrived. And then I was upset by the set-back of it. And now I'm thrilled that he's wetting his diapers. Because of what it means. It's funny how perspective does that.

I used to be upset or be worried about things that don't even phase me anymore. The things that truly matter get brought to center stage and everything else gets pushed into the wings.

Even when you get enough sleep you still don't feel well-rested. Most nights I feel like I'm doing spiritual battle when I sleep. Last night (in my dream) I was pleading the blood of Jesus over me and was quoting Scripture. In my dream I was doing face-to-face battle with Satan. The temptations felt so real. It's interesting what comes out of us when we're sleeping.

I look around me and see things that need to be done, fixed, finished, accomplished, called, sent, e-mailed, faxed, etc. And yeah, I need to do those things... but sometimes they just don't matter much. Not when you have a very sick child in the hospital. Not when you're begging and pleading with God to have mercy and heal your son. Not when your world feels like it's spinning out of control. Indeed, those dishes can wait. The laundry can be put away later.

But other things take immediate priority. Every time Libby wants to pray, I stop what we're doing to pray. (We prayed for her hiccups on 4 occasions today. Every chance to steal a snuggle, hug, kiss I take it. Every opportunity I have to tell my kids I love them and how proud of them I am, I say it.

I'm tired, exhausted, bone-weary, emotionally drained, physically emptied, spiritually worn but there's this sweet grace that sustains. In those moments where I don't feel like I can handle one more thing... something is lifted from me. A problem is solved in an unexpected way. A friend treats me to tea and sympathy. I receive an encouraging card from someone I haven't seen in years. Or God Himself just takes my hands and gives it a firm squeeze and reminds me that I'm not alone.

The days are long. They stretch out endlessly into the distance. But when I turn back to look at them I see them as wispy shadows. The days are blurring and running into one another. I don't know which way is up at times. I don't know what I'm doing half the time. I just sort of know the next step. the next thing in front of me. The next task. The next appointment. The next visit.

This ripping myself and throwing myself between the kids is rough. I feel like I'm at the hospital and get to see Samuel but don't see the other kids... or I'm at home and with the kids but don't see Samuel. I'm pulled in so many directions.

And all the responsibilities and pressures of real life are there. The bills are waiting to be paid. The paperwork waiting to be filled. The medical appointments needing to be made and then kept. The therapy that needs to be practiced. The groceries to be bought. The errands to be run. And trying to manage a home renovation in the midst. Painting and planning and new flooring. Black out drapes or black out blinds? A new ceiling fan. Re-staining some bunk beds. Purchasing twin mattresses. Redoing the living room. Trying to remove all mold and dust. Trying to get things as germ-free as possible.

And then little ones who need to be told they're loved. Who will be given milk when they ask. Who will be changed when they have "Stinky Bipers!" Who are hugged and cuddled and wrestled and affirmed. Who get new shoes when they've outgrown their old ones. Who need songs sung to them and books read to them. Who want to know you're still there and present in their life and love them more than words can say.

And a husband who needs affection and encouragement and strength and hope in the midst of living in a hospital... where you feel beat down and dreary as you watch Samuel in pain. You see the pounds melt off his body. You see the hair fall out. You look at him and see a cancer patient. But stop, that's Samuel. That's not just some other stranger... that's our baby.

Trying to find ways to relieve Mike's stress and give him breaks... and bring him coffee... and lunch or dinner. Or stand by his side when we try not to cry as we stare at our son. We hold our breath when his temperature is taken. Fever up or down? His oxygen levels looking low... he needs a blow-by to get his oxygen saturation up. Samuel's uncomfortable. Push the morphine button. He wants to watch a movie. He wants you to hold his hand or his arm. He wants you to never leave. His eyes plead with you when you go out the door, "please don't go" they say in flashing green.

And sometimes you feel like you're stumbling forward. Moving through the motions. Taking a deep breath and exhaling only to repeat the same deep breath and exhale. You worry about all the gaps that are happening in your life and asking God to take care of each precious need and child. To fill the lack. To be more than enough to all of us.

Maybe as we empty of ourselves we will be filled with more of Him. Maybe we're creating room for Him to work. For His glory and purposes to shine. We're stripped of all, and there is nothing of ourselves left and instead we are putting on Him. Maybe this is what He wants... to be revealed in weak, broken, humbled people. We have nothing proud to offer of our own accord. But we have Him. And He is enough. He is sufficient. So we hold onto Him which is really Him holding us and promising to not let us go. Him and his tender mercies and compassions that are new every morning. Him and His steadfast love that never ceases, never comes to an end.

So even when I'm messed up or tired or crying or wishing I could cry He's there. He sustains. His presence is a promise. Jesus is nearer than ever. And even though I am afraid. Afraid I won't be strong enough, brave enough, kind enough, good enough, I rest in the comfort that it's not me... it's not what I'm doing. He's done it. I rest and trust in Him. And I ask Him to be faithful and finish this good work He's begun in me...

Party.


Thursday night to Friday a.m. I was up with Samuel about 15 times to push his morphine button or help him throw up. I just hold the bucket. I was there til Friday evening. Mike and I got to step out and have some dinner and TIME together. He also came home. (2 nights in a row). And I was there. We were both home at the same time (definition of miracle). A huge thanks to Mike's Dad for watching Samuel overnight.


We had a birthday party to go to this morning at the Norfolk Botanical Gardens. The kids had a great time. My heart was sad that Samuel wasn't there. It was really obvious to me that he was missing.

Samuel had a better day today. I didn't get to see him til this evening but he was perky and cheerful. We had a little pizza party in the hospital's playroom to celebrate my mom's birthday. He was so happy to participate and loved being at a "Burfday Party". I think my Mom enjoyed it as well. I had made a Funfetti Cake. We had birthday hats, napkins, plates and cups. I even hung up a birthday banner. (Nothing like Dollar Tree to make a party complete).

Samuel ate some birthday cake and then proceeded to throw up immediately. Later he ended up walking around the room though. Yay! He was enjoying being with his siblings and amongst his relatives. It was a good night.

It ended kind of rough. Samuel was tired and got back in his wagon (our means of transportation for him). Libby came over to hug him and they were holding each other's hands and crying. Libby was saying how much she missed him and wants him to come home. Samuel was crying too. It was pretty emotional.

I feel emotionally drained tonight. Happy to be together and heartbroken. It's so hard seeing Samuel in this state. It's just not "him" if you know what I mean. Hoping for some "up" days...

Thursday, September 16, 2010

Bad day for Samuel. He's in a lot of pain. He's getting a blood transfusion as I type. I'm going to stay the night to relieve Mike. Seeing as this is one of the worst days he's had I don't know how well it will go.

Praying for grace.

Tuesday, September 14, 2010

Samuel's thrown up 3 times tonight but has been a complete champ about it. We're listening to my favorite worship CD (Sing Over Me). He's fast asleep right now. The music is soothing. And although targeted for children it's wonderful for adults. Rich truths. Peaceful sounds.

It's so great to be near Samuel for such an extended period of time. It's my hope that Mike is able to get some much needed rest and refreshment.

I'm going to bed soon.

I just wanted to recount a couple funny things.

Libby told Nurse Casey today. "I'm 5. I'm smart and I'm organized."

My brother Christopher and I were on the elevator recently. It was quite crowded and full of nurses and visitors. Christopher was asking me about Michael and what his condition was. So I told him,"cerebral palsy" and he had all these questions for me about it. A mom stepped out of the elevator and she said, "Wow, you've given me so much to be thankful for."

The elevator closed and I tried not to laugh. I turned to Christopher and with a still full elevator said,"Good thing I didn't tell her my other child has cancer."

It's so funny how certain "problems" become relative in light of other larger problems. My life has fallen into perspective over the years especially after significant life changing events. God continues to remind me though that He is ever-present, ever-faithful God even in the midst of harder and more challenging circumstances.

Trying to be thankful for the blessings God has given us. New vehicles. Great medical care and staff. Samuel's personality and smile returning. Kind nurses. Beautiful cards. Giving hearts. Soothing music. Milkshakes. New make-up. Fun shoes. A baby still nestled safely in my womb. Little hands and cheeks to kiss and cuddle. Get well balloons. Encouraging texts. Medicine to help you sleep. Our God is truly amazing. Generous beyond measure. He loves and cares for us tenderly in the midst of the tumult.

Sleep is calling me...

Monday, September 13, 2010

You know you're CRAZY when...



-you're up 20 minutes til one in the morning and your eating caramel kettle corn and doing your online administrative tasks.
-you impulsively buy chocolate but don't eat it. It's just on permanent hold in your purse.
-you're pregnant but you're upset that you've gained two pounds.
-you sing at the top of your lungs "Singing in the Rain" while jumping in puddles in your rain boots.
-You worry about your child being accepted at school while another one of your children has cancer.
-You get a crazy high from buying yourself flowers.
-You give birth to 5 children in 6 years.
-You question your sanity most days.
-You tell your friends you have to "go potty" when you excuse yourself for the restroom.
-You feel like eating ColdStone ice-cream for dinner.
-You wonder if the walking to and from the hospital counts as "real exercise"
-You get stared at by strangers in Target as you ride in your electric shopping cart because you're supposed to stay off your feet as much as possible.
-You wear a maternity support belt that has three separate attachments and looks like weight-lifting support gear.
-You can't remember the title of the song you want to buy on iTunes but can sing most every Veggie Tales song word for word.
-You don't know what date it is or day it is.
-You schedule three medical appointments three days in a row.
-You feel guilty that you're not driving your kids to school in the mornings and are able to get 2 hours extra sleep most days.
-You write most of your thank you notes after midnight.
-You're more nervous about what you'll do with a healthy, full-term baby than you are about going into pre-term labor.
-You can call and set up appointments with therapists, neurologists, oncologists, etc. but are afraid to call and order a pizza.
-You think a good time to leave CHKD to head home is between 4:30-5 p.m.
-You haven't had a haircut since February but are too tired to call and make the appointment to get one.
-You listen to K-Love and think you're NOT going to end up crying.
-You have peace that surpasses all understanding.. Oh wait, no. That's just God at work.
-You fall asleep typing

Sunday, September 12, 2010

Today.

I went to church today... again! It was great. The message was really encouraging. The current series is called Christ: our hope in trials. Eric gave a great message on loving one another.

I was able to have lunch with a friend afterwards and felt encouraged to my soul... just being able to talk about whatever's on my mind and not having to use a filter.

Mike and Libby are having a date today... the donut shop and barnes and noble... what fun :) I'm so glad she gets to ahve time with her Papa.

I haven't been online for several days... very limited access as of late.

Kids are doing well and enjoying school. We're starting to create a routine... yay! I have a doctor's appt. tomorrow. Libby has the dentist on Tuesday. Michael is getting fitted for braces on his legs on Wednesday and has speech on Thursday.

The chemo has been making Samuel sick. In spite of it he's been really cheerful at times and has even enjoyed being hugged and tickled on occasion.

Days feel long and busy and full. I feel like I'm going from one thing to the next but I feel at peace and calm. Sometimes my body gets stressed and keeps the anxiety in but I feel like my soul is at rest.

My OB appointment on Friday was fun... hee hee. Okay, it wasn't. I had to do the glucola test and then get my blood drawn. And of course, as per usual, they had to stick me twice to get blood. And did I mention they wanted to re-do my papsmear because they put my specimen in the wrong container and the lab wouldn't run it... I told them, "No. I will not do it again." This was after a fiasco the last time to do just get it done.... Anyway, the scan shows that Peter is breach. He is pushing against my aorta which makes me practically pass out. But otherwise all looks good. Fluid levels normal.

Feeling tired and pregnant but nothing unusual with that.

Off to go solve the world's problems... or maybe just drink a latte. I think the latter is more likely...

Thursday, September 09, 2010

Magic Shoes.



Mike bought me magic shoes this past week-end. Of course the picture is not doing the fabulous pair justice but that's okay... I know what they look like. They're embroidered with flowers and silver thread and sparkly sequins and the most dazzling twinkly silver ever.

When I put them on I feel like a combination of Dorothy (of the Wizard of Oz) and ballerina princess.

Never thought a pair of shoes could transform me so much :)

Wednesday, September 08, 2010

THANK YOU!!!

We have been so blessed by the generous love and financial support from so many! Thank you!

We are using the money for the following purchases:

1.) New Flooring. We need to replace the carpets (they're over 10 years old) and some of them have mold. So starting with Samuel's room we'll go out from there.

2.) New mattresses. For Samuel's bed in his room and for the one he will have downstairs in the playroom.

3.) Paint. Enough said :)

4.) Black out shades for his room.

Thanks for your love and prayers. We are so grateful for the practical care we are receiving!

Tuesday, September 07, 2010

Libby and Michael had a great first day of school. It was so weird not having Samuel with us. It's in those kind of moments that his absence is so blaring.

Samuel had an eventful day. His catheter came out AGAIN! It had also come out yesterday. After several failed attempts to get it back in he had to go to the operating room and have the urologist put in a supra pubic valve. This way it won't get pulled out. It also gives us control of opening and closing the urine valve. The good thing is when we want to try and see if he's "ready" to urinate himself there's no pulling a tube out and putting it back in if it fails.

Because of the failed attempts at putting in the foley catheter his urethra is currently mangled :(

Poor Mike had to be with Samuel and watch him suffer. Not a good day for him.

Tired and ready for bed. Getting ready to leave the hospital and go home. There was so much paperwork to do today for the kids school- so glad I got it done!

Tomorrow is another day. Yawn. I better go so I can drive home safely.

Monday, September 06, 2010

7 years today. Spending time with Mike. Enjoying it very much. Unfortunately Peter keeps pushing on one of my main arteries which directs blood flow and I keep feeling like I'm going to pass out. That parts not so good. So going to go to Babies R'Us and get a maternity support belt. That should help.

And then dinner... at hmm, Cheesecake Factory or Carrabba's... It's a win/win.

Doing it Again!

Yep, this is a repeat. It was so successful the first go around... but some people didn't get to place their orders. Here's another chance for those who missed it!

Help Us Whip Cancer Pampered Chef Party

Proceeds Go to Samuel Napier Fund {20% of purchases (before tax and s&h)}

Please make online order purchase by September 15, 2010

1.) Go to: www.pamperedchef.biz/jennifernapier
2.) Click on Shop Online.
3.) Click on Invited to a show and would like to place an order.
4.) Host First Name Type: Samuel
Host Last Name type: Napier
5.) From Hosts Listed Below click on Samuel Napier
6.) Shop!

*If you’re local feel free to ship to host. If you live away please pay for direct shipping and handling!*

Sunday, September 05, 2010

A room for Samuel.

We're trying to create a new room for Samuel. We had a great idea of moving the twins into Libby's room and letting Libby and Samuel share a room. My Dad pointed out though that this could be a problem when Samuel is really sick on chemo. That might be hard for Libby to hear Samuel throwing up or moaning in the night.

So, solution 2. We're going to create a "home" for Christopher on the 3rd floor. He needs electric and plumbing upstairs as well as insulation and drywall, etc. But if Christopher has his own space then we'll turn his room into Libby's room. And use Libby's room to be Samuel's room. We'll need to paint and put in some kind of flooring that allows us to clean up easily. Fake wood or even some kind of laminate. Cleaning vomit out of carpet isn't very easy. Plus who knows what other messes will need cleaning :) I'm hoping to get new sheets for him and plenty on hand so we can change his sheets as needed.

The good thing is if we move him to Libby's room he will be very close to the bathroom as well as being close to our bedroom.

The dishwasher isn't working and the dryer is making weird noises.

I was talking to Mike about how weary I am. It's discouraging when you're just starting a journey and you're already wiped-out and exhausted and don't know how to go any further. I mean we're only two steps in and feel ready to quit but we have a whole marathon ahead of us.

Asking God for endurance and provision. It would be great to bless Samuel with a new room of his own when he comes home.

Saturday, September 04, 2010

Raw.

I've been so frustrated with how quickly I get annoyed at everything. And as my cousin reminded me today. "You're upset that you're not perfect." Yep, that's exactly it. i want my response to be perfect to this imperfect situation. to my imperfect hormones. my imperfect feelings.

I feel like one large raw nerve.

I explained it to a friend this way. It's like you have a migraine (without having a migraine)... you're super sensitive to noise, to light, to people.

Sometimes it feels like the whole world, when I'm out in public, is mocking me. I'm so sensitive to everything around me.

I sat in the car and cried for a good solid ten minutes today.

So tired of being uber-sensitive girl.

BTW- we are looking for a punching bag. For real. I'm not saying it to be cute. We really need one. We're looking for healthy ways to deal with our aggressive tendencies :)

Friday, September 03, 2010

7 years.

Monday will be Mike and my 7th Anniversary. It's been a busy 7 years. 4 children soon to be 5. Many medical crisis, losses, gains, struggles, victories, sorrows, joys, and a lot of love.

I'm thankful to have the kind of husband I have. He's amazing. He's my best friend and my faithful love. It's been a wild journey but there's no one else I'd rather go through it with than him.

This wasn't the way we were planning on spending our Anniversary... but hopefully we can make the most of it somehow :)

About Samuel's Fund - Clarifications and Contingencies

Mike and I were talking and we wanted to be sure that we were clear on Samuel's Fund. We're using the proceeds we raise for Samuel's needs, especially when we come home. We'll also be using it for gas money to get us to and fro from the hospital. In short, it is a contingency fund. We currently have insurance for Samuel, but we don't know how it will play out in the future. So, again, it's a contingency fund.

We just wanted to be clear that we haven't started to get bills from the hospital yet and that the fund is only for that.

If that throws anyone or makes you uncomfortable about giving or about having already given, you can email mike @ michaelsnapier@gmail.com. You can "undonate" or make a special request for how money you've donated could be used.

We are so touched by people's response and donations we just wanted to be sure that people knew what they were giving towards.

Thursday, September 02, 2010

Being Drawn.


Why don't you sit down and have a beer with me. Well, it's a root beer, I'm drinking but it's IBC so that makes it okay :)

How in the world am I supposed to "make my life work?" I don't know how to juggle the twins and Libby and Samuel. I don't know how to do the back and forth from the hospital... trying to find time for my husband... managing school next week... dealing with Ian (bec. he's not accepted to go to school at Grassfield Elementary)... care for the house... take it easy so I don't go into labor... and then manage a newborn when he comes.

Whew.

I'm a planner. I like organization. I like to see things done neatly and orderly and properly. I'm a first-born, type A personality for goodness sakes! So, how do we do it when we're only given the next day at a time?

I feel like God's trying to draw my heart. He's reminding me of the Israelites and the Manna in the desert. He met their daily needs. I think He wants to remind me of that. And it's hard. Because once again I have to trust Him... and I'm kind of tired of it. I mean, aren't I already doing that with Samuel's cancer? Aren't I doing that with so many other things? But He's stretching my faith and making me deeper. And after a good long exhausted cry and an equally long nap I felt better today.

Is anything fixed? Nope. Do I have life "planned" out? Nope. Just tomorrow. In the meantime I have to rejoice in the AMAZING ways God is taking care of us daily. People to bring Mike breakfast or lunch at just the right times. People able to watch the kids for me. Favor at school- Libby seems to have a WONDERFUL teacher! I had purchased all my school supplies prior to Samuel being admitted in the hospital. Friends kidnapping and taking me out to dinner- thank you SKIBS! Friends driving across the country (literally) to help.

God has provided school clothes for Libby. We found the other lens to Michael's glasses so he once again has functioning glasses. A house full of groceries, clean water and air-conditioning. Vehicles donated to us! Aleya, Michael's caregiver, in our life... who is not some glorified babysitter but family! Starbucks coffee at just the right times.

So God's miraculous provision is happening all around us. I just have to open my eyes to see it. Am I still scared of the future? Absolutely. That's why I trust God for today. And tomorrow I will trust Him for that day.

Hurricane Earl is supposed to hit sometime tonight. The storms of this life seem to already have been hitting us... and continuing to do us... but I know God holds us. I know He's not letting go. I'm tempted to give up and jump into a pit of despair. But He's reminding me, "Jennifer, I am here. I promised I would never leave or forsake you. Trust me." And so my little tiny mustard seed faith is there. It's not big or mighty or pretentious. It's humble and weak and practically shattered but the point is it's present. It's still there... as small as it is.

So friends keep praying. This is a tiring journey and I already am weary. I feel super pregnant and super exhausted. Mike's tired. At times we're so overwhelmed and often our hearts feel on the verge of breaking. We need our Big Daddy God to sustain us.

Another thing I was just reminded of... God is reminding me that I'm not alone. That He's given me friends and siblings in Christ to gather around us and comfort us... and to hold up our arms when they're drooping and to cry with us and laugh with us. So thanks for being there. Thanks for the comments you leave on my blog or the personal e-mails or FB messages you send or signing the guestbook on CaringBridge. It really helps. Thanks for being one of God's many ways of ministering to us.

So another swig of root beer and it's off to bed. Yawn. tomorrow is a new day...

Wednesday, September 01, 2010

current needs:

Thanks for all the gifts and packages and checks and gift cards! What a huge help and blessing it has been.

Our current needs are the following:

-2 new/gently used pack n'plays. For whatever reason the ones we had have bit the dust... and at around the same time.

-a crib for Michael. Another thing that has fallen apart and desperately needs to be replaced..

-a twin bed for Samuel. Frame/Mattress, etc. We want to have one for the downstairs playroom that we can use as a "couch" but also a bed for him. This way we can read books together, kids can play together and Samuel can rest but watch his siblings.

-a twin blow up mattress for our bedroom. Some nights he will probably need to be with us. This way we can use it and yet put it away when not needed.

-We are purchasing paint. (if you want to chip in for a Lowe's or Wal-mart card that would be great!)

-As always gift cards or greatly appreciated (gas, meals, Starbucks, Target, etc.)

Thanks for your love, prayers, and support!

thoughts..

I don't know how many of you have ever been in a crisis before... but let me explain if you never have... sometimes you can just be uber-irritable. It's funny things that would just mildly bug you before become the worst things ever. The temptation to want to smack people increases a 100 fold with each passing day. It takes a lot of self-control and patience to not lose it with people. And then it makes me annoyed with myself that I'm acting this way... that I let everything get under my skin. That everytime someone cuts me off in traffic or bumps my physical person, or is just mildly rude makes me want to errupt like a volcano.

The kids start school next week and I feel so unready for life. I have school supplies and backpacks, etc. I've gotten the transportation situation under control. But I just don't feel... I don't know... like life should be progressing yet.

Samuel's still in the hospital and will continue to be for a while. The house feels hollow without him at home. So I guess it doesn't feel like school should start because he won't be there.... he's not ready to be at home or school yet.

Samuel's sleeping comfortably at the moment. They put him back on continuous morphine because the bolus doses weren't cutting it. His "infected" area seems to clear up so he doesn't need a new central line... Thank God.

I miss having Mike around. He's such a source of stability for me. At times I feel like a single mom trying to get schedules and kids under control and do administrative stuff on top of it all. Sleeping alone. No one to talk to late at night before I got to bed or to rub my back when it hurts... or to hold and cry...

I'm tired. I'm weary. I just plain want this to all be done. I want to go home. I want Samuel to go home. I want everything to be okay and be whatever kind of "normal" we had going before this. My heart breaks and my tummy hurts and there's nothing that can fix it except for God.

And then the thoughts stalk me... what if this never gets fixed. What if we never go back to "normal". What if, what if, what if. I have to capture these wild thoughts on a leash and submit them to God.

All the driving back and forth, going to and fro, all the eating when I can, whatever I can... all the heartache... it's in His hands.

I hate the thought of Samuel losing his hair. I know it's coming. I know I'm not ready... but the truth is I will never "be ready" for this. That's okay. I was so disheartened when I realized he could lose his eyebrows and eyelashes as well. I hadn't thought of that.

I've always loved his hair... every bit of it. The expression from his eyebrows, his long beautiful eyelashes, his thick brown hair that's tinted with blonde from the summer.

Libby has drawn a picture of Samuel in the hospital bed on the Doodle Pad. She wants to show it to Samuel when he wakes up. She and I had some time together... a date at Panera Bread and a trip to Starbucks. She loves coming to see him in the hospital. Okay, not the "in the hospital" part but seeing Samuel. It does my heart good to see them interact. To see them play. To watch them make the other light up. She brought a cookie to share with him. She gives from her heart. She told me, "This will make Samuel feel loved."

He doesn't want to eat or drink lately. I'm watching the weight melt off him. It makes me sad.

so sorry this isn't a happy, upbeat post. But not all days are like that... yet God remains.