Wednesday, March 28, 2012

Goodbye to you


Yesterday we returned home from our semi successful road trip to Edmonton only to have my mother show me the newspaper, more specifically the obituaries. A section I am always afraid to look at because I don’t want to see anymore young faces staring back at me. On Tuesday afternoon a young man by the name of Clayton was looking back at me. He was diagnosed a few months after Christian with the same type of cancer – they battled together. He was 17 years old when he lost his battle to cancer and it has hit me hard. Clayton was a friendly face we would often see in the hallway at hospital. Christian and he were often neighbors and he was always asking how Christian was doing. Clayton would say what a brave little boy Christian was, how strong he was and how he inspired him. So to imagine him gone, I feel such a huge sense of sadness for this earthly loss of a joyous spirit. Somebody who put their own horrible diagnosis aside to ask another little boy how he was doing. So farewell Clayton, I pray you are resting peacefully with the Father.

Awesome storm trooper ballon from "With a twist"
Today is plus 43 only 57 days left until we can leave this nightmarish year behind us. It is very nice to be at home and not travelling to the hospital constantly. Unfortunately I had these unrealistic ideas of what life would be like when we got home. I just assumed we would walk in the doors of our home and life would be great. Well it is true what they tell us at the hospital that the weeks/months right after transplant and discharge are just as difficult and in some respects – more stressful. Nothing will ever be as horrible as watching Christian throwing up mouthfuls of blood and tissue or watching him lay in a bed in the ICU hooked up to a ventilator and numerous pumps. But after we got discharged and sent home I so desperately wanted the journey to come to the end, I wanted to close the book and start a new one. But the chapters but keep going on and on. Every pain, every wince, every, “mommy I don’t feel so well” brings instant shocks of horror and like bile in my throat I a force down the bad thoughts and hold onto God’s promises.
Enjoyed a Flames game courtesy of ticket donations to the ACH
When we first got home we had a huge cornucopia of medications he had to have each day and trying to remember which ones and when was more than my worn out brain could handle. On top of that, the medications seem to make his stomach hurt and vomit would shortly ensue.  He didn’t seem to be eating or drinking as much as he needed to in order sustain himself, this combined with the difficult night feeds led to anxiety levels reaching an all-time high. Thankfully his stomach sorted itself out within a week or so and as of today he has gained almost three pounds! Yahoo.
Lovin the rides at WEM


Unfortunately we had to open another chapter in Christian’s long, drawn out story this weekend. We had been in Edmonton for only a few short hours when we had to make a trip to the hospital because he was in agonizing pain when he tried to pee. 18 hours between urinations, lots of pain medications and some sleepless nights later we have discovered that he has a blockage (you know where!) that is not allowing him to pee without intense pain. So he will require a small day surgery to fix the problem (I will spare you the details but you can probably imagine) and then perhaps we can move on. It seems that there is always one more thing with Christian, nothing is ever clear-cut or as it should be. Not that cancer is following any rules either.
Ryan and Grandpa trying to install a new dishwasher!
This little road trip up to Edmonton to visit my dad was intended to be a warm up vacation for our trip out to the coast. Testing the waters (or Ryan’s tolerance for driving!) so we can prepare ourselves for a much longer drive in a few weeks time. Now I am apprehensive about going because I am thinking if you can end up with a blocked “pee path” then what can’t happen? Trust Trust Trust Trust Trust. I am creating a new mantra for myself so that I can enjoy the days. It is so exhausting to stay upbeat and creative when things are dicey. When Evelyn tears her books to little pieces at night when she can’t sleep. When Ryan throws his food of his tray and yells, “owwww”. When I think I want to just crawl up into a hole and sleep for days – I will think of Clayton, and Christian and Taiya and Diamond and Maxim and Julia and Ty and all the other kids on the oncology ward who don’t have that luxury. Thanks for reading.
Watching for puppies!

Today I am thankful for:
1.     Watching my kids play together in the backyard tonight
2.     Sitting on the couch with my dad at night cause neither of us can sleep
3.     The rides at West Edmonton Mall
4.   Taking the kids to see "The Lorax" courtesy of Jamie's Preschool - watching Evelyn yell in shear terror but not be able to take her eyes off the screen was priceless! Listening to Christian sing, "let it grow" at the end of the movie. What a cool day. 

 

Thursday, March 15, 2012

UP AND DOWN


Enjoying home time with the boys!!!!
This blog is so aptly named because it truly explains what our ‘post-hospital’ life has been like. We were officially discharged on Saturday morning (March 10th – shared with my brothers birthday so I will never forget!) and enjoyed the sunny drive home to Airdrie. We left our room, 1123, after 38 days at the hospital at I will fully admit that I shed a few tears when I hugged our nurse’s goodbye. Since our discharge we have good moments of laughter and tickling and we have horrible moments of screaming and sickness.  I am praying the later will end soon.

Christian and Marc
I am still at a loss for how to properly thank somebody for helping to save my son’s life. I cannot say enough good things about the staff at the ACH, from the nurses, child life specialist to the music teachers. When I told Christian we were done at the hospital, he looked at me and said; does this mean I won’t see Marc anymore? (Marc is the resident music teacher). I am crying right now as I type this because it truly is a loss for him. How do I explain to him that somebody who has brought him so much joy, relaxation and distraction from his pain, will no longer be a part of his days? Even on his sickest day Marc was able to bring a smile to his face just by playing his favorite songs and on his best day he banged the drum along with him while they pounded out the Star Wars music. I am sad that I do not have anything to replace this with. I am sad that I he doesn’t have this constant in his week when he is not feeling well. I can’t run down the hallway and see if Marc is available to play some music for him. I don’t know if I can explain how it feels to lose these things, the things that brought Christian joy. The chemotherapy, NG issues, dressing changes, nausea, testing and the rest of the yucky stuff we won’t miss for a second. But the good stuff, and there is SO much good stuff, will be deeply missed.  
Saying Goodbye
When I wrote my last blog I was reflecting on our vast journey and I was looking back through my 2000 pictures for points of reference. And I found many days that Chris and I would rather not have happened. But the more I looked through the photo’s the more I realized that this past year has brought us some amazing times and opportunities to enjoy life. When people ask me about what we are going through I will often say that it has been the worst year of my life and also the best year of my life. Sounds kind of weird but we have been given such an amazing gift of growth and clarity for the fragility of life. Lessons that cannot be taught – they must be experienced. I cannot explain to somebody else what it feels like to lay in bed and look at your son sleeping beside you, skinny and sick, and wonder if you have the strength to let them go. I can’t verbalize the horrible feeling I had in my stomach on the nights I wasn’t sure he was going to make it. But today we have hope in our lives and excitement as we plan our immediate future. Excitement that is heightened because we fully embrace the realism that today IS A GIFT. You cannot have today back. You do not get another chance to say I love you, or cuddle with your two year old because tomorrow your kids will be grown and gone and you might wonder why you didn’t lay with them and read them another story when they asked (even if it’s a stall tactic as it always is!) You won’t miss that money that you won’t earn while you spend more time with your kids.
Our 'board' the day we left

I am trying to learn to have peace in my heart, even when discord is all around me. I want to be able to look at a person who is angry and instead of getting defensive try to see where they are coming from…how they have been hurt. I just want to live each day with some measure of stillness and peace. I want to stop and take time to read my kids stories, play games with them, be silly with them, get in the tub with them and hide under the sheets with them.

This past year we went on many trips to Canmore, even if just for a few hours, to throw rocks in the water at the base of a mountain. Play in a playground surrounded by such immense beauty it still takes my breath away. I love looking back at my photo’s of our pizza picnics in the park, even with a bald little Christian trucking along. The day we drove home from the hospital it was so beautiful Evelyn said, “What a great day for pizza in the park”. I was astounded that she had been so affected by these outings, days that costs us nothing more than $10 for our pizza.
Nurse Elly and the kids

Jamie’s Preschool has been another blessing for our family. Although we have only been able to attend the preschool a few times (as Christian always seemed to be sick) the women who organize the school have hearts of gold and immediately our family developed a tight bond with them. Christian and Evelyn enjoyed the first outing to Callaway Park, the trip to Canmore, the gymnastics at Stars gymnastics club and of course class held me Mrs. Tiffany Howe.  We will never forget the day we almost killed long serving teacher, Mrs. Mackie, with Christian’s peanut butter sandwich! – oops.
Christian enjoying gym time at preschool

We have been able to meet so many amazing people in our own community, people who supported us even though they had never met us before. People who prayed for Christian and prayed for our family. Meeting the Phaneuf family (whose son Jayden is also fighting his own cancer battle) whose church has now become our home church. Gathering with this amazing family has literally saved mine and Chris’ spiritual life and our marriage. A life changing friendship that would have never happened had it not being for cancer.

Having the opportunity to have Chris’ extended family come and stay with us numerous times has been such a blessing. Especially for Evelyn and Ryan who have created such an amazing bond with their Nanny Marilyn and Papa Norm. Evelyn asked her papa today on the phone (from Nova Scotia), “Papa are you coming home soon – I want to play puppets with you?” Feeling the support from your family when things are really upside down and knowing they will do whatever has to be done to help.
Our family vacation to Nova Scotia, the Jason Jaffray Golf tournament, street hockey with the cousins, and many more memories will be just as big and memorable as the year Christian had cancer.

Them's are some tired eyes... i think i need the spa.....!
Today Christian is doing ok. He quite skinny and we are working hard to get some more weight onto his body. He needs chub, strength, balance and energy. This will all come with time, which we have plenty of. His tummy continues to be sore from the massive onslaught this past year has served him. And I imagine it will be a while before he is able to eat, as we want him to. So I am so thankful for the NG tube (even though it gives him nightmares!) We are trying to enjoy the lengthening days, the sun and the opportunities to be at home together. Our hope is to make a trip to the west coast in the next month (if we are allowed!) then to the beach once Christian has his strength up. Thank you for your continued prayers.

Today I am thankful for:
1.     Ikea Hot dogs
2.     Taking off tight pants and putting on loungers at the end of the day
3.     Zumba


Friday, March 9, 2012

REMISSION


Christian showing me how much he loves me!

This past week as we near the culmination of our journey I have found myself in constant reflection. Excited about the future, a little scared to leave behind what we know so well and a tad apprehensive about what could possibly lay ahead. As much as I promised myself I would not think about it, I don’t think I would be human, or at least a mother if I didn’t have some anxiety about Christian’s future. Every three months for the next three years he will have a CT scan. A scan looking for the regression of his cancer. A scan, as one doctor put it, which would show signs of the beginning of the end. This is a dark thought and one that rarely occupies my mind. But late at night when I can’t sleep or when I lay beside him in bed at night and watch him sleep I wonder for how much long do we get to keep him – forever? Thankfully I have the words of a good friend that roam in my head, “who said we were guaranteed another day with any of our kids, or family members for that matter?” So even though Christian will forever be at risk I know that life is short for all of us and the risk of losing somebody before their time is always there. So I am going to try my best not to dwell on the future but enjoy the present. I refer to some of my favorite bible passages to guide my head with my anxiety and worry, to provide some peace and reassurance in my heart.

Matthew 6:34
So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own


Philippians 4:6-7
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Day before cancer diagnosis
So here we are ready to hit the road, say our goodbyes in the unit and jump in our van and make the trek back to Airdrie to live in our house together as a family – finally. I think about the day Christian was diagnosed. I remember that night like it was yesterday. Taking him into the ER and not even getting the chance to sit down in the waiting room as they whisked him back to be seen. Sleeping in the lazy boy chair in his room while we waited till morning for his ultrasound. Hearing some random doctor tell me that “I am sorry but it looks like cancer”. I can hear the fear in Chris’ voice when I had to call and tell him to come to the hospital, “Megan, please tell me what it is”. Making the move over to unit 1 (that I didn’t actually understand was the oncology ward for some time!) and meeting the soft and caring faces of the staff there. I remember spending some dark nights with nurse Courtney who was so reassuring, I remember her the question…is he going to die? I will never forget her face or her words. I remember the morning we waited for the results of his bone marrow biopsy – Chris was standing outside in rounds and I was trying to lip read to hear if his cancer had metastasized. So many intense moments in those first weeks.

One week after diagnosis
I distinctly remember watching the chemotherapy drip down into his lines for his first round of chemotherapy. I was thinking ok here we go this is it. I wondered how long before he would get sick and how long before his hair falls out? Thinking it was so surreal that we were doing this.  It was like I was playing a part on TV of a mother with her sick child. This couldn’t possibly be real. I remember when his hair started to fall out when we were at our radiation scan. The first few strands left on a pillow made cancer that much more of a reality. There is no hiding the meaning behind his bald head. I remember that Christian didn’t want to cut his hair when it started to fall out so I made a deal with him so that hair wouldn’t end up everywhere! I cut a few pieces of his hair then he cut a few pieces of mine.
Radiation was scary
Then things smoothed out, his tumor shrunk and life got a bit easier to deal with. Then radiation started and it was like we were starting all over again. Every morning from Monday to Friday we went to the Tom Baker where Christian was put to sleep so he could receive his dose of radiation. The day I went in to see the machine and look at his body cast – the room was so dark and he was so limp in his cast. His arms and legs splayed out and his abdomen completely exposed and vulnerable. Like we were playing a trick on him while he was sleeping. I remember it rained many of the days we were there and Christian would often complain he was cold. He would eat banana muffins and strawberry filled Timbits after he woke up. He was such a sweetie he won the hearts of all the staff there at the radiation department. 

Halifax Harbour
I remember how amazing it was to go to Nova Scotia for a few weeks in the summer time. I would run through Victoria park and think to myself that this was what normal life used to feel like. Being outdoors, letting kids play together, not running to the hospital every second day. But shortly after we got home his ability to eat and his tummy pains progressed until they decided to do a CT scan to see what was going on. Sure enough his tumor had regressed. We were only 9 weeks from finishing his whole treatment. When first diagnosed percentages and numbers are thrown around for odds of survival. 70% they said….and at the time I wondered who where going to be the unlucky ones? Which of the three kids of out 10 were not going to make it? And now the nightmare had come true. We had moved down into the 30% category.
Chemo in the clinic

Four days after surgery
Fast forward a few weeks to Christians 12 hour resection surgery. Dr. Mary Brindle and a team of about 6 other surgeons saved Christians life that day. Because they didn’t leave any visible cancer cells behind we were ready to fight again. The devil has made so many attempts to take Christian from us but God continues to give us the resources we need to keep him here with us. Resources like chemotherapy, radiation, Dr. Mary Brindle, Dr. Baudry, stem cell transplants and the Alberta Children’s hospital. First he tried cancer but God gave us Dr. Victor Lewis and chemotherapy. Then he tried regression but God gave us Dr. Brindle and donor blood vessels. Then he though he would try to take away his ability to breath with a failed extubation but Dr. Megan Mahoney got him reintubated again. He thought he would try his hand at starvation and a bowel obstruction but God gave us Dr. Baudry who performed an emergency surgery at 2:00am on December 10th. God gave us the infectious disease control who helped Christian battle infection while he was neutropeonic after the emergency surgery. Then he tried to derail our attempts at stem cell transplant but God used the distraction to get Christian to the best weight possible. Satan tried to take out our ability to support Christian while waiting for his engraftment after stem cell transplant with Chris getting sick and not being able to come to the hospital. But all that he did was strengthen my bond with Christian and my ability to communicate with the nurses and doctors on the unit. So it is easy to see that every effort was made to take him from us but God overcame and literally delivered Christian back to us. Just as He promised,  Jesus never took Christian, Chris or I off of his shoulders. Times when I shouldn’t have been able to function he carried both of us.
After emergency surgery

As I write these words I lay in my bed with Christian snuggled beside me for the first time after 36 straight days in the hospital.
After:
60 weeks of treatment
45 rounds of chemotherapy
28 days of radiation
430 needles
One 12 hour tumor resection surgery
One emergency bowel obstruction surgery
26 blood transfusions
9 platelet transfusions
30,606 kilometers driven to and fro the hospital

Today he is cancer free and in remission

Love from nanny and nanny
There is nothing else left to say except we have to give utmost praise and glory to our God in heaven for giving us the strength we needed to get through this trial. Praise to God for keeping us unyielding as a married couple and allowing us to learn and grow through our difficult times. Praise to God for helping us to see the good when things are bad. Praise to God for Christian coming home to be with us. Praise to God.

Today I am thankful for:
1.     Jayden Phaneuf being declared cancer free and in remission
2.     Watching Evelyn, Christian and Ryan all kneeling around the toy bin to play this afternoon
3.     Ginger ale and orange juice mixed together
video

Wednesday, March 7, 2012

Plus 21


Here I sit once more on the parent bed in our unit room, looking at those all to familiar COP lights, wondering if this will be one of my last nights here on the unit. One of my last posts from a dark hospital room. Christian is doing so well and we are just ‘chomping on the bit’ to get out of here. He is completely off all of his sedatives and narcotics and his NG feeds are increasing in volume. We are extra cautious with his weight since we have been in the ‘starving’ mode too often this past year. I am very anxious to get him to a good solid weight where he can have some meat on his bones, fat on his bum and energy to spare. The massive doses of chemotherapy, multiple surgeries, bowel obstruction and general malaise have left his taste buds on vacation. He says he is hungry and constantly asks for food, but the minute he smells it or tastes it he makes this funny face and immediately spits it out. So the eating will be slow but we are very thankful for his feeding tube. He was not so happy yesterday when we had to have it replaced because the old one blocked up and was no longer any good. Of all the things he has had to endure over these past months the NG tube insertion is by far one of the worst. Most of the other horrible things seem to have a lot of sedatives and pain medications associated with them so he does not remember much, but those darn NG tubes will probably give him nightmares until he is 20! I can only imagine what it would feel like to have a large piece of plastic shoved up my nostril, down my nose, down the back of my throat finally ending in my stomach – wretched.
How Christian feels about having and NG inserted
Trying to unclog his NG tube with Pepsi!!!! I told Christian his grampa would be soooo proud!
I am very grateful that he doesn’t seem to have any memory of these past few weeks. I ask if he remembers the days that he was throwing up blood or when his throat was so sore all he could do was spit. But he looks at me and thinks briefly and says, “no – not really”. So they will be horrible memories that will bother me for a long time but they will not haunt him – gracefully. Our only other setback these days are his intense episodes of bone pain. Whether they stem from all the drugs he has been on, growing pains, his bones creating more blood products or from too much movement – they hurt badly and don’t seem to respond to any pain medications. This being said, as I write this I think of our good friends the Phaneuf’s whose son, Jayden, has recently completed his chemotherapy treatments (and I am happy to say is in remission!) but has lost the movement and use of his legs. So while I feel bad for Christian and the pain he experiences – it is a joy that he is able to experience pain. Because I know that Jayden’s parents would want the chance to calm Jayden’s tears and try to ease his pains.
Hanging with Evelyn at the hospital
Grateful, thankful and joyful are emotions I want to find each day. Chris and I were talking on the phone the other day – I had been at the hospital and had spent a horrible sleepless night – I was angry and Chris asked me why I was being so negative about everything and I realized that I had allowed myself to slip into a tight sock of negative emotions. When something happened I immediately put on my black colored glasses. Glasses that complain about treatments, lack of sleep, hospitals and everything else that was making me grumpy. Of all the words I hear in a day I can still here him saying to me, “why are you so negative?” And I don’t know. After all we have been through you would think I would wake up in the morning and kiss the ground. But I don’t. I am going to try and remember tomorrow morning to put on my rose colored glasses and see if things look any better J

Nurse Meghan and Stacey sword fighting with 'General Grevious"
The doctors say that we may get to leave the hospital this weekend. As soon as they feel that he is medically stable then he can go. I know he will thrive once we are at home and he is with his toys and his family and his house – he will be so much better. Our family will be so much better. We can finally have some peace and relaxation in our days and not wonder who is going to stay at the hospital at tonight. We no longer have to ponder what treatments are coming up and what days we need help on. We can, however, begin to wonder about what fun things we will do in the coming days. Where will go on a warm trip? When can we go to the zoo and see the penguins? When can we head back to the pool and sit in the hot tub? His central line will have to stay in a just a little while longer until we know he won’t need any more blood products. They will surgically remove the line when we are coming to the hospital only one a week for blood tests and check ups. Then we can really hit the water and the beach. So here’s hoping this weekend involves a family get together complete with good food, lots of laughs, lots of cuddles, lots of family and most of all thanks to our God.
Christian's "Life Saving" surgeon  Dr. Mary Brindle - how do you thank someone for saving your son's life?
Today I am thankful for:
1.     Chocolate chip cookies
2.      Triathlon – might help me get in shape again
3.     Christian’s body hugging jammies – so cute when you’re skinny!
Christian giving Evan one of his irresistable "i love you" kisses!

Sunday, March 4, 2012

EVELYN


My sweet heart at 5 months

Dear Evelyn
It is March, only six short weeks from your third birthday and I wonder where this past year has gone. So much has happened to our little family in this past season I feel as though you have slipped through my fingers. I came home from the hospital today after living there for almost two weeks straight and you seem to have turned into a little girl overnight. When this debacle began over a year ago you were barely toddling around. I remember how cute you were – you used to come into the unit and all the nurses would ohh and ahhh over your precociousness. When Christian was first diagnosed with cancer you were only 19 months old. You still slept in a crib, drank from a bottle – you were still my little baby.  Now you are the smartest, independent and vibrant little girl I know. Your vocabulary seems to grow by the day, as we were driving home from the hospital today you told me you couldn’t wait for us to get home so you could introduce me to your new puppy. “I can wait to show him to you, mommy!”
Christian holding Evan at 7 days old

You spend each evening down in Grammy’s house having pretzels and milk and each bedtime we cuddle into your single bed to read stories. Strawberry shortcake’s Halloween Play is always among the tops. You love your babies and now more than ever you love your little animals, which you lovingly stuff into your suitcase and roll around with much joy. When you and Ryan get the chance to play in Emily’s Backyard you immediately head for the playhouse at the back and reintroduce yourself to the little babies living there. The wonderful volunteers who work at Emilie’s tell me that you have a set routine that they could run a clock by. Come into Emilie’s, head to the back, pick up the box of dolls and stuffies and head over to the table or couch to begin a new day. Then we proceed down to Christian’s unit and room where you immediately make a bee line for the unit kitchen where you help yourself to a container of chocolate milk and a cheese string. These are some of the things I will never forget about this past year. You say as we enter the hospital, “can I go and see my brother now?” but not before stopping to make sure you wash your hands and kiss the cow on the way by.

You have grown to become such an amazing strong willed little girl. You are headstrong and independent and anybody who wants to say otherwise will have to take that up with you! Yesterday when we were at the hospital I accidently poked you in the eye with my finger and you cried and put your head on my leg. I had such an immediate sense of sadness as I realized I have missed out on so much of your little life this past while. I have not been the one to hold you and console your tears and your hurts. You tried not too cry but I knew it really hurt. I said to you,  “its ok to cry, Evie, especially when something hurts really bad”. You looked at me and put your head on my shoulder and cried. I felt so sad and lost and wished we could have this past year back together. I hope you know how much you mean to me and how special my only little girl is. You are so strong and brave, jumping off the high landing down to Grammy’s house. I am amazed at your braveness and hope that you will be able to keep that fieriness about you.
Evelyn right before Christian's diagnosis
Do you know how special you are? Do you know that I love to watch you play and talk to your animals? I love to peak through your bedroom door while you sit on the carpet and set your animals just the way you want them. I love to watch you get dressed on your own – never dreaming to try and pick out clothes for you. Unless it is pretty, pink or purple and “dress-like” it doesn’t go on your body. I worry that you have missed me and that I lost my chance to make a special connection with you, that you have had to find security in others. What a shame if my little sweetheart couldn’t find solace in her own mommy. I want to take you swimming, to the zoo, to the park, to the mountains to throw rocks in the water and jump into all the little explorations you want to do. I love to watch you sleep at night – I go into your room late at night and brush the hair off your forehead just so I can watch you breath. It is the only time you are calm during the day and I love to watch your face and wonder what you are dreaming about.

Evelyn, my little sweetie pie, my little puppy dog, I want to be sure that you knew how much I love you, how much I appreciate your individuality, your strong spirit. I want you to know that even though this has been a crazy and fast year I have never stopped watching you grow. Watching you become independent. Watching you develop attachments with different people. It breaks my heart every time we have to take you away from somebody you love. Watching papa norm leave after Christmas was one of the hardest things I have ever seen, “Don’t go papa”. Having her ask me where Aunty Sarah and Nick are, for the days and weeks following our vacation to Nova Scotia. I hope you know that even though these people are temporarily gone from your ‘space’ they are still in your heart and miss you more than you could ever imagine. I hope you understand how much you are loved. It is so easy to pass you over, as you are so content on your own. I was truly reminded of how much you need contact and play when you asked me one day if Sophia’s daddy (uncle Dalton) could come over and play with you and your puppies. When you see other little girls in Emily’s Backyard and you ask if you can go in and play with them.  You ask us constantly if you can go to Nanny Marilyn’s house to play….if only.

Loves loves loves being outside
I love holding you in my arms when you are pretending to be a puppy dog or a kitty since this is the only way I get cuddles with you! I love to lay in bed with you and read stories as you have a tendency to snuggle in close and put your head on my shoulder. I love that I can’t get through a single page without you asking me a million questions about what you are seeing and what is going on. I love that this morning when I came downstairs you had helped yourself to some breakfast – chocolate cheesecake from the fridge! You got out the dish and a fork and sat at the counter and ate your breakfast. I will never forget the day I found you in the toy room watching your movie in the morning while eating a bag of popcorn (that you had helped yourself too!) for breakfast. You are so independent yet I can tell you yearn for love, affecting and somebody to play with you. It breaks my heart that we are so busy that I can’t be with you each morning to play in the toy room with you. I thank God everyday that Grammy lives with us and spends so much time with you, reads to you and plays your little games with you. I will be forever grateful that Nanny Marilyn takes you to the stores and just lets you wander aimlessly for hours on end. I am going to make it my personal goal for this next few months to take you outside, let you explore the things you want to see, take you to the mountains and the rivers, lead you on a hike to a waterfall and watch you swim in the ocean. I want to build a sand castle beside you and jump over ocean waves with you. I want to watch you squeal and see that huge smile of yours. I want you to fall asleep, exhausted, in my lap at the end of the day. I want you to know your mommy loves you so much. I want to inspire you to be healthy and free. I love that while I watched the biggest loser the other night you asked me if I exercised like that, then you proceeded to run laps around the kitchen island then stop and do some pushups, “look mommy – I am exercising just like you!” My heart aches for the times we have missed this past 14 months and I want so badly to move onto the next 14 months and make new memories that are special for you. That part of the day would revolve around you and making you feel special. Because you are so special and I love you more than any words I can put on paper, my sweet little kitty kat.

First rock climbing expedition

Today I am thankful for:
1.     Uncle Peder showing up at the hospital just at the right time.
2.     Cleaning out the junk drawer
3.     Re-organizing furniture when you can’t afford to buy new stuff!

Christian with Nurse Laura (my diet coke supplier!) 
PS….Christian is doing so much better today on Day plus 18. He only has one narcotic running through his lines tonight and we are hoping that he will be off all medication tomorrow. The big battle now is to get his NG feeds going well so that we can go home even if he can’t eat. He is only tolerating them so so right now and I don’t want to end up in a position where he is starving again. When we leave the hospital I want to feel confident that we can take care of him without medical intervention. So perhaps later on this week we will get a discharge and begin new again.

Pure nanny marilyn love