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.

Monday, November 29, 2010

I hate cancer. I really do. That is one thing I can safely say that I truly hate. I hate knowing that it's in my son's body. I hate being helpless to defeat it. I feel crippled and weak. I can't do anything except watch, wait, and pray. Samuel throws up so much.... all the time. It hurts to watch. It sickens one to hear it. How do you function normally around it? It becomes a part of the new normal. I'm sure it would overwhelm people the first time... and maybe subsequent times but when it's your day in/day out reality.... well, you just learn to live with it.

I hate that he has to get shots every night. They burn him. The shot isn't so bad... it's the injection itself... it burns going in.

His eyelashes are almost completely gone. It looks semi-comical to see a random grouping of long eyelashes. Samuel had eyelashes women would weep over. Gorgeous, long black thick eyelashes. They are now almost non-existent. His eyebrows are fading out as well.

My Dad recently shaved his head which looks really good. His head looks much better.

My dear sweet boy suffers so much. I watch him cry. It sucks. It really does.

Here we are allowing his body to be injected with poison (chemo)... and we're just praying it will kill his cancer so that his cancer won't kill him. And then we're praying that the chemo won't kill him. And we're praying that it won't come back.... or won't transform into leukemia or some other cancer. What other recourse do we have?

I had always thought that if I got cancer I would go "raw" and do the hallelujah diet and live as healthfully as possible.

We can't even get our child to eat... period.

We can't do surgery. We'd have to remove almost all pelvic organs, etc. And this cancer is aggressive and would come back anyway. We have to kill it. And what does chemo do? It kills fast growing cells. And what is fast growing currently? The cancer. That's why though you lose your hair... fast growing cells.

Samuel goes to clinic again tomorrow. It's funny. I have yet to take Samuel to clinic myself. I've been with him in the hospital but only during inpatient stays. The clinic is outpatient. Mike has taken him time and again.

Michael has been coughing horribly lately. his breathing treatments aren't cutting it. So I'm taking him to the doctors. He's started tugging on his ear... my guess? Ear infection. He's very congested. Poor guy. They'll probably put him on an oral steroid or want to do a chest x-ray, etc. Fun, fun.

Well, Peter was up a lot last night. I'm exhausted. I'd better go to bed. Tomorrow is a new day.

Wednesday, November 24, 2010

Slideshow of Peter

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Samuel's home. He went to the clinic today and all looks well. We'll all be together for Thanksgiving tomorrow. Mike finished taking Samuel to CHKD... dropped Samuel off at our friends and picked up Michael. Michael has an appt. with the neurologist today.

Peter's been doing great. Growing well. Eating and sleeping well for the most part. Looking forward to enjoying holiday time. It's so fun with small children. I love it!

Hoping to get our Christmas tree this week-end. I've decided to put special ornaments on the tree on my sister's birthday (Dec. 7th). I usually get our tree on her birthday but this way we can enjoy our tree longer.... and it takes the stress off on the 7th.... it allows me to be or do whatever I want that day.

It almost feels like a comedy routine the way the house gets clean and then becomes so dirty so fast. I've organized and cleaned my room multiple times but it always is a process. I know all you moms out there know what I'm talking about. Clean. Reclean. Repeat. Organize. Re-organize. Repeat. Clean diaper. Dirty Diaper. Change Diaper. Repeat.

Sometimes it's hard to feel like what i'm doing has value when I do the same things over and over again and nothing seems to be finished or done.

I went to a Mom's support group last night. It's for those who have children with cancer. It was an interesting experience. I wish I had been braver to speak up and ask questions. I just wasn't sure how the meeting was "run" so to speak. I finally asked a question 5 minutes before I had to leave and I got some great feedback. So maybe I'll go again but ask questions right away instead of waiting.

I'm tired. Been struggling with panic attacks again and trying to get a hold of myself. Life is overwhelming and sometimes I forget to breathe :) Time to rest....

Saturday, November 20, 2010

This is a very special blanket. It was my dad's baby blanket. I love that all my children have been wrapped in their grandpa's blanket.


Waaah.

This was Libby's special Oxford Onesie from a dear friend's mom who was living in England at the time. It's a favorite.
Mommy's Little Pumpkin.
One little, two little, three little turtles.
Ian loves Peter so much.

Sweet Boy.
Libby is in love with her baby brother....she even said that she's glad he's not a girl!
Samuel was supposed to come home today... and of course, he's not. He will (supposedly) come home tomorrow. This might not seem like a big deal but it can be so hard and disappointing when you're counting on something and it doesn't happen... and you repeat that process OVER and OVER again.

Mike was really discouraged. So I packed up the kids and we all went to them. I think it was good for everybody's hearts.

I've had a really hard time watching Samuel deteriorate. I feel like I'm looking at a cancer patient and not my son. His face is bloated. His head is bald. He's losing his eyebrows and eyelashes. It literally sickens me. But then we'll have a moment where he will lean towards me and say, "I love you Mama." And I remember that it is Samuel. A changed Samuel. But still my boy.

Trying to manage the chaos. But I am blessed. I have had a lot of support and help even when Mike has been gone. I feel a lot better than I have been. I'm tired...of course :) BUT I am not in pain and feel more myself.

Peter has caught up with his weight! He gained 7 oz. in 7 days. The doctor is thrilled and I don't need to bring Peter back until his 2 months appointment.

I had all these deep and profound things to write and post about... but when it comes time to actually have a moment... it all slips away. So, there's a little update for now.

Monday, November 15, 2010

Mini post. Sbux closes in 5 min. No internet at home. Long story short. Doing well. Peter's doing great. Easy baby all in all. Very sweet. Great eater.

Samuels' been sick. His coloring is awful. Throwing up all the time. Supposed to have 5 day stay starting tomorrow at CHKD. Heart is breaking. Hate seeing him this way.

Please be praying for all of us. It is kind of crazy around here :)

Wednesday, November 10, 2010

Going Home!


Hey, we're going home today. All of us. Magically we've been able to wean him off his IV,his blood sugars have stabilized. He's had his pictures today. He will get circumcised and then we'll go home. They've already written the discharge orders. I'm so excited. I can't wait to be home and for us to be all together! Happy Day! Thank you Jesus for answering my prayers!

Monday, November 08, 2010

Rollercoaster.

Today was a day of ups and downs. I'm very tired. My pain has significantly increased. I feel irritable, moody, and emotional. I think my hormones are out of whack coupled with having surgery and the effects of anesthesia. Peter is still having blood sugar issues.

The hospital blessed us with a celebration meal at lunch. A delicious cheeseburger and fries and a piece of coconut cake- it was quite good. I was definitely happy that I got to see and hold Peter today. I actually was able to nurse him twice. Once at 5 and then again at 8. I am going to see him in an hour for his next feed. I'm so happy he's learning how to nurse. In addition, his heart murmur has disappeared. Yay!

I just wish Peter was in the room with me. It's really painful and uncomfortable walking all the way to the special care nursery. It's also a reminder of all my past experiences there with Samuel and then with the twins. I want to be thankful and rejoice knowing that this too will pass. This isn't a major issue (blood sugar). As much though as I try to reason with myself my heart still feels sad. I guess I thought with him being full term that things would be "normal" for us in some way. I'm disappointed because I don't think he will get to go home with us. I'm sure he won't be here for "very long" but it just adds another element to the mix. Who will care for the kids if Mike takes me to the hospital to see Peter? I can't drive for a while. I can't do any heavy lifting. I have a longer recovery time because of the c-section. And who will take care of Samuel and the other kids? Lots of questions. Life so often isn't convenient. And that's good for us because I think we're so used to the many conveniences of life. I think it helps us to turn to God.

So I'm turning to Him and leaving it in His hands. It's beyond my ability to take care of and definitely not in my power or control. I know He's not anxious about it... so I will cling to that.... He's got the whole world in His hands.

Sunday, November 07, 2010

Dear Friends and Family,

Well last night they said they would send me home in the morning but after talking a while with the doctor in the a.m. she felt it would be best to go ahead and do a c-section. It was a wait to make sure all the morphine had worn off. They then put the monitors back on. I was contracting every 3 minutes and intensely... yet still no change in my cervix.

So... we went ahead with the section. It was a total success and I felt fine! Praise God!

Peter Joel arrived at 2:41 p.m. today on November 7th. He is 19.8 inches long and 9 lbs, 4 oz. He's absolutely beautiful.

I have yet to hold him because he needed to go to the special care nursery. His blood sugar level is low and he has a heart murmur. I'm not concerned but am excited to be able to hold him soon (I hope).

He has gorgeous dark hair, chubby cheeks, and a beautiful round face. he looks like a doll!

Resting now. Only got 3 hours of sleep last night. Hoping to catch up before I start caring for our new little man.

Thanks for your prayers!




Once again I find myself trying to sleep in a hospital. Surprise, surprise.

Having intense contractions again starting at 6 last night. I also felt like I was starting to leak fluid.

Went to the hospital to get checked out. Of course they saw my intense contractions but I am only 2-3 cm dilated and 60% effaced. Thankfully they offered me the option of pain management. So now I’m in bed writing. And I’m on morphine. What relief. The pain of these contractions is so real despite their lack of productivity.

I was again in the hospital last week from Monday to Tuesday. I had a good nurse and doctor and they validated the reality of my contractions. They even tried to let me “progress” on my own. I walked, squatted, did knee lifts, etc. to try to stimulate the contractions to become productive for two hours. Nothing.

Here’s the thing they can’t “help me along” by giving me potossin etc. It needs to happen naturally… and they won’t offer me a c-section until I’m 39 weeks. So for now I’m scheduled to have a c-section on the 15th. Still hoping to go before hand… but we’ll see.

Samuel and I both have doctor appointments on Monday. I see my OB on Tuesday.

I’ve been struggling with myself lately. I keep coming to grips with the fact that I’m a created being and NOT the creator. On top of that coming to terms with my humanness and sinfulness. I am weak. I need sleep. I am not self-sufficient or independent. I need help. My body hurts. My heart aches even worse than my body. I’ve been anxious to meet this new little person. I’ve been struggling with the thoughts of “when will this ever happen?”

I’m concerned about Samuel. When will he get his feeding tube put in? He really needs it. He threw up the night before several times. We had our dear friend Alexis over and she helped him during the night. I felt so bad I didn’t even know about it. I was so exhausted I slept through it all.

A dear man passed away this week. He had been battling brain cancer for the past 16 months. I was able to attend the memorial service and was blessed by the testimony of his life. But I’m still sad. Not for him. He’s in glory with our Savior. With his son. With my sister. He’s seeing the Savior face to face. But it’s for those who are here on this side of death. Those who will live without him. I know they’re glad he’s no longer suffering… but I know it doesn’t mean their hearts don’t break.

And there’s a part of me in the back of my mind that thinks, “Dear God, please don’t let the next funeral be Samuel’s.” It’s not something I dwell on but it is something that comes up in my mind. I recognize that it’s a potential reality. I also know though that I would despair if I when down that train of thought too often.

People often tell me what a wonderful testimony we’re going to have through all of this. But what if the testimony is of Mike and I enduring our son having cancer… and then dying? What if it’s about how we have to live without him? I’m glad people believe that Samuel will be healed. I want to believe that too. Yet, I also know that God’s goodness is not based on healing Samuel. It’s not based on what I want to happen. I know God will be glorified but will it be in Samuel’s life??? Or Samuel’s death???

I’m sure these thoughts seem morbid. At five thirty in the morning, drugged up on morphine and exhausted from contractions I think I’m just being honest.

If I knew that God would heal Samuel and that things were going to be okay there would be no room for me to have to trust God. I’m believing in Him in spite of not knowing the outcome. I know God loves Samuel more than I do. I know God will receive the glory in this. But that’s where the faith part comes in. I have to cling to Jesus and trust Him with all the unknowns. I have to believe that He really knows what is best.

So enough of my tired rambling. My parents are home with the kids. My precious husband is sleeping and because of his exhaustion snoring beside me. My little Peter is moving inside me. And Jesus is encouraging me, sustaining me, and comforting me.

I’m too tired to hold on… so I know He’s holding me.

Monday, November 01, 2010

The Waiting Game.


In case you've been wondering what's going on or where I've been I have two words: No Internet. Not having access to internet when you're on "bedrest" really stinks. So, enough said I will try to update you.

Samuel and I are still playing flip-flop hospital visits with Mike. Poor guy.

I'm having a lot of contractions but nothing productive... yet :)

I'm 37 weeks (as of yesterday). It's great to be full-term. Last Monday I had an ultrasound appointment. The technician had a really clear view and "accurate" measurements. It looks like Peter was 8 lbs, 13 oz. So, surprise, surprise... a big baby boy. We'll see how accurate it is when he's born.

I'll be honest... trying to attempt a VBAC doesn't sound like a great option to me if he's over 10 pounds. So, I'm thinking this week or forget it... I'll go c-section. I don't want my uterus to rupture... I don't want a broken pelvic bone. I don't want a baby stuck... he's got a pretty big head...

Libby can't wait to meet Peter. She talks about it all the time.I can't wait too. I'm really actually excited to go into real labor and "do this thing".

Libby's birthday party was a total success last week-end. We also celebrated on Sunday with all our family the next night. Samuel was home!

That night I went into heavy contractions. Again, every 2 minutes. They gave me an IV and pain meds and then sent me home at 4:30 in the morning. We then got up a couple of hours later to go to my doctor's appt. I've caught up on sleep for the most part but Mike really hasn't. He needs a week of sleep to recover from the past 3 months.

I was in the hospital a few nights ago. I felt a tear and thought it might have been my placenta. I stopped feeling Peter move and got nervous. So we went in to get monitored. 5 hours later... back home. Peter was looking great but they didn't like my contractions. Come on? Are we really surprised by these contractions. Okay, at least I'm not.

So, last night we had a low-key party. Burned some wood and trash and enjoyed hotdogs with family and a few friends. It was a great evening full of yummy food, good conversation, and the warmth of fellowship.

Libby was dressed as Ariel. Michael was a lion. Samuel was Luke Skywalker. Ian was a fighter pilot in a flight suit. They were so cute and had a blast and way, way, too much candy.

Samuel was supposed to be admitted Friday for a two day stay at CHKD. His counts were too low to do chemo. Sad, his counts were low but happy to have a full week-end as a family. It was wonderful! Just to be home and then out together. We had a friends birthday party on Saturday. The kids had so much fun. A bounce house. Hot dogs and plenty of cake. They cried when it was time to go. We all went to church yesterday. It was again so great to be together.

So, now we wait. I'll laugh if we can't get this baby to come out :) You try so hard to keep him inside and then when it's "time" to go he doesn't want to budge :)

Well, I have a doctors appointment today. We'll see what's happening...

Saturday, October 23, 2010

Blood transfusion.

Okay, long story short. Samuel's back in the hospital. His breathing was rapid and shallow. heart rate was high. Oxygen levels lower than normal. So Mike had to take him to the ER last night. We're waiting for a blood transfusion. It will help him not have to work so hard. He'll be less weak, pale, and tired after the transfusion.

Libby's birthday party is in a couple hours. Aleya and I took Lib and twins to the IHOP. She had a blast. She not only enjoyed her chocolate chip funny face pancake but she was sung too. She was quite aglow.

Well, days don't turn out the way we think they will but we're making the most of it :)

Friday, October 22, 2010

The latest.

So, I ended up back in the hospital on Wednesday. Contractions were coming every 2 minutes. It turns out I was really dehydrated. So after a full IV bag and some pain meds I went home. Not bad :)

Samuel was being released on Wedensday. So it was quite an interesting game of playing discharge. It's amazing how we do this- flip-flop hospital stays.

Samuel went to clinic today. He looks good. He will chemo again next week and need to be admitted for a 2 day stay. Hopefully it won't be longer than that.

I have a feeling Peter will be arriving in the world next week. I will be 36 weeks on Sunday and it should be an all systems go from there.

Samuel has to get shots administered at home to help bring up his ANC count (part of white blood celll count).

Tomorrow is Libby's 6th birthday. She's terribly excited and has already been spoiled with packages and cards. Hard for her to not feel like a princess I imagine.

So much is happening. Our back doors are replaced! They were rotted and soon we'll be putting in a bit of tile and then carpet. Hurray.

Spoke with social worker today. Good conversation and very helpful.

Mike's still under the weather but we're both on antibiotics now and it's made a world of difference. My sinus infection is cleared up and Mike is better, not perfect and back to self, but much better. I think he's so run down that it's contributing to him not being well.

So, now we wait. I don't have internet at home so sorry for the lack of contact. It's not personal :)

Samuel's having a good day and all the kids are in high spirits. It's so nice. Going to enjoy tomorrow and then maybe have a baby :)

Monday, October 18, 2010

I'm still feeling yucky and miserable and not myself. I really feel weird most of the time. Today I started getting really dizzy and had spots in front of my eyes. I miss Mike terribly. I hate being so clingy and needy. I don't like feeling this way. Thankfully these are just feelings and they will pass.

Mike had a really good day with Samuel. We're not sure if he'll come home tomorrow as we had originally planned. I hope he is. He's going to need to get a feeding tube put in soon. So sometime soon we'll be back in the OR for him.

Life is overwhelming me. Calling nursing. Physical Therapists. Prosthetics and Orthotics. Chesapeake Pediatrics. Libby's teacher. Medical Supply company. EdMarc. Etc.

The list goes on. My ears are ringing and the sinus pressure makes my head want to explode.

Maybe tomorrow will be better? Here's hoping.

Saturday, October 16, 2010

When the tears slide sideways...

I was laying on my bed feeling thoroughly crushed this morning and my tears began to slide sideways. They usually run down my cheeks and chin but today they fell and ran over my nose and my other eyelid and landed in my ear. it reminded me of long ago summers with swimmers ear.

The world feels turned upside down. I know it's not. I see people going on around me as business as usual. It's just for my small personal little world I feel so out of control. I feel broken. Humbled. Semi-shattered.

I was in the hospital on Tuesday with contractions coming every one to two minutes. I didn't think they would stop. But thankfully they did. They gave me this medicine, apparently some type of opiate, and my favorite anti-nauseau med, phengrin, and they slowed. I fell asleep.

I was then transferred to the ante-partum unit for therapeutic rest. I slept well that night but the rest of the time there was pretty miserable. The care was sloppy and inefficient and I won't get into details or I will just get riled up again. It just wasn't a good experience.

BUT, Peter is still on the inside! I will be 35 weeks tomorrow! Yay.

Mike stayed with me at the hospital and we were blessed to have nursing come and hook Samuel up for his IV feeds. Thank God! Thank EdMarc for great care!

I'm still having contractions but hoping I can hold off for a week or two. I see the doctors on Wednesday.

The pack n play is set up in the room and all ready for Peter. His clothes are washed and ready. His blankets are all clean. I got diapers.... but they're all size 2! I think I need to get some newborns and ones and I should be set :)

Libby's birthday is next Saturday. She will be 6! It would be great to hold off until after her birthday for there to be a new baby.

I feel OVERWHELMED by all the administrative tasks I have on my plate. I've got to trust God with them! I can only do so much. And see, even just typing it brought on a contraction. Whew. I guess I really should just take it easy, right?

Michael's asthma is flaring. I took him in to the docs on Tuesday morning and they put him on oral steroids. He might need to go in on Monday for a follow-up because it doesn't seem to be doing the trick so to speak. He was out of school all last week.

He's supposed to have a pumpkin field trip for school. I need to get Liby cupcakes for school for her birthday for next week. And we haven't bought her presents yet.

Blah. Blah. Blah. Yes, I could keep going. I'm a bit nutty. C'est la vie.

Deep breath. Relax. All will be well in the end.

I see God's sweet mercy and grace in my life. I just need to recognize it for what it is. Yes, we're experiencing serious hardships and trials but Our God is consistently there. Consistently holding us. Consistently providing for us. Ever faithful. Ever true.

Well, off to get Michael more abuterol and myself some airborne and emergen-c. Yep, still got this cold thing going. Please pray for God's sustaining power. I'm fighting loneliness and despair... I know He's there holding me. I just wish I "felt" it.
An encouraging poem that was sent to me from a dear friend who is going through much suffering. I found comfort this afternoon from reading it.

The Sands
The Soul for comfort holds herself to be
Inviolate; but like the blowing sands
That sift in shuttered houses, Christ's demands
Intrude and sting, deny her to be free

She twist and turns but finds it vain to flee,
The living Word is in the very air,
She can't escape a wound that's everywhere,
She can but stand OR yield - to ecstasy.

Her Lord is seeking entrance; she must choose.
A thickening callus can withstand the pain
Of this rough irritant, the sands that swirl
Against her thus defied. But if she lose
Her self, Christ enters in - the sharp-edged grain
Of sand embedded grows a shining pearl.

A Severe Mercy

Friday, October 08, 2010

Being Home.

I've been sick with a chest cold/sinus infection thing but have been using a netti pot, zicam, taking sudafed and mucinex and taking emergen-c and airborne around the clock. I think I'm kicking it before it could get really bad.

The kids have been a little nuts and the first day home was particulary grueling. I hadn't felt that drained in a loooooong time.

We are adjusting better though. I know how to set up the TPN (IV nutrition) and how to do all sorts of new things.

We have been still working on cleaning and organizing the house. Things are happening.

Samuel went to the oncology clinic today and is doing really well. He will go back to the clinic on Tuesday and we will take him off TPN for 3 days to see if it will change how much he throws up/wretches. Next Friday he will be admitted for a five day stay. It's a more "intense" chemo.

Tomorrow, I'm having a celebration of life (baby shower) for Peter. It's at church from 2-4 and I'm excited to celebrate something happy and encouraging in our lives.

We're worn out but we're glad Samuel is home. Trying to just keep taking deep breaths and adjust to all that's going on.

Wednesday, October 06, 2010

Home.

Samuel is home. He's playing with Libby in the playroom right now. It's been great having him home but also quite a large adjustment. I think it will take a while to get into the "swing" of things so to speak. He's on 7-8 different medicines and there's a lot to keep up with.

The nurse last night showed us how to set up his TPN. We have to use a needle to withdraw water from a bottle and mix his vitamins and add it to his TPN and mix it. It's kind of fascinating but I must confess I'm nervous using this stuff. I feel like I will be professionally in the medical field before all is said and done.

Samuel is throwing up a lot still. He always wants help, someone to be there and wipe his mouth and hold his head. Which is fine except that it's so regular.

he's going to be receiving outpatient physical therapy at home. He's been in bed for a long time. He's loving moving around though and likes to walk independently. He will fall though if you're not careful because he's still wobbly.

Mike and I are both tired and he's still a bit under the weather. It will be interesting to see how this next week plays out...

Monday, October 04, 2010

Better day.


Its weird but today has been a better day.It's still gray out. Maybe it's because I get to spend time with Samuel. I've been here since noon and then I get to stay the night. Unfortunately it's because Mike is sick. He has a chest cold and sinus issues. He's feeling awful. So that part is not good.

I had a great time being with my Aunt today. I got to talk to Dr. Lowe and he feels that when Samuel can tolerate oral meds for 24 hours he can come home. I'm hoping for Wednesday if he does well.

He's still throwing up but he's been doing better than he had been. He's been super cheerful and playful. He did great with Physical Therapy today. He also walked over to my bed and wanted to play puppy. He was "digging" on the bed for a bone. It was hysterical. A friend is bringing me dinner tonight. It's been a nice day.

Sometimes it's just nice to have a good day. Especially when I've been feeling sour. Okay, well back to playing batman...

Sunday, October 03, 2010

Sad.

After getting attached to Sadie we had to say quick good-byes yesterday. She had been going to the bathroom in the house. I think this was from a change of diet. But Christopher didn't feel like she would be a good fit, apparently the previous owners didn't tell us she was slightly schizofrentic(sp?). Libby and I were pretty devastated and had some good, hard cries. She was such a sweet and gentle dog and so quickly added so much joy to our lives. Libby kept saying, "but she was perfect" and "Samuel didn't even get to meet her."

We had gotten news that Samuel would be coming home tomorrow or Tuesday. But now they think he's suffering from morphine withdrawls and are keeping him longer.

Frustrated, tired, weary and over it would describe my general mood today. I wish the sunshine would come back.

I feel like I need to make a t-shirt that says, "Life is good, but sometimes it sucks."

Friday, October 01, 2010

Just so you know the average weight of a 33 week baby (gestationally) is 4.2 pounds. So, gulp, he IS big. If I go full-term I might be skipping all newborn clothes!

Pumpkin or Turkey?

So, we went to the OBGYN yesterday. I asked if they could do an ultrasound because it had been a while. Peter's flipped and is no longer breach! Yay! He's head down and in the "ready" position. He's also 6 pounds already. I'll be 33 weeks on Sunday. So they were a little freaked out at his size because he's a big boy. So they made me do another glucola test even though I passed the other two times with flying colors. They're so funny. I told them I have big boys...

Samuel was 6 lbs, 3 oz. at 30 weeks. Twins were 5 lbs, 3oz, and 4lbs, 7 oz. at 32 weeks. So, of course this guy is a little bit on the bigger side.

So the question is a 6 pound pumpkin (October) or a little butterball turkey (November). We'll see.

Just got great news! Samuel's pubic tube is coming out as I type!

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...