While i wait......

Playing in the snow - just like you should be!

Dearest Christian,

Mommy is so scared. I am on a real live rollercoaster that we can’t get off. Remember that ride at Disneyland that you absolutely loved but could only get on once? Goofy’s rollercoaster? My stomach feels like it is constantly on a rollercoaster. When the coaster is climbing the hill I am excited with anticipation – I am eager to see what is at the top, I am eager to see what God has in store for us, for you. I know that God is moving in our family and in our lives. I know he is going to show us some amazing miracles, more than what we have already seen. More families are in need of help; more little children are having a hard time with their cancer.

Chillin with nanny

I laid in bed with you last night, I couldn’t sleep after hearing that many of our oncology family members received heart breaking news. Not just one family but three. I wanted to love you so hard but you were asleep and I didn’t want to disturb you. I wondered how hard I could hold you before you tell me that I was ‘hugging you too hard’. You pushed your back into my stomach and I felt every bone in your back push into me. Your skinny little feet touching my knees. I put my arms around you pulled you in closer. I rubbed my face in your hair; I ran my fingers through your long locks and stretched it out over my face trying to remember the smell. It was so soft like a newborn babies hair. I rubbed my fingers across your cheek and lips – they were so soft and relaxed. I could feel you breathing on my hand. I wanted to remember that moment forever; in case it was the last time I would get to cuddle with you. In case it was the last time you were going to let me rub your face and stroke your hair. 

So glad you guys love each other.....

I couldn’t help but to wonder what would I do if I couldn’t hold you every night. What would our bed feel like without you between us? Would I be able to fill the hole with your memories? Could the feel of your skin and hair stay in my fingers for ever? Would I always be able to remember how well you fit in my ‘cuddle grove”? Like we were meant to fit together? Would I remember the sound of your voice saying to me, “mommy, don’t you want to cuddle me?” I don’t want to let the sad thoughts stay in m head too long – just long enough to remind me that I need to grasps each moment that presents itself to me. Tonight when I went into Evelyn’s room she was patiently waiting for somebody to read to her – “Here mommy, I picked out these two books”. I read them to her and she rests her head on my shoulder. When I am done she asks me if I want to stay so she isn’t lonely. I loveingly lay beside her and hold her the same way I hold you. I feel so unbelieveably blessed. Blessed to be reminded that these times will be like dust in the wind if I don’t write it down, if I don’t jump on every chance I get to love my life.

Hey....shouldn't it be the other way around???

People must wonder what it feels like to ‘wait’. Waiting for your complete and continued healing. Wait for God to show Himself to us again, for other miracles that need to happen. I constantly refer to 2 Corinthians 12:9 that says that “God’s grace is sufficient for you, for my power is made perfect in your weakness”. I know that God provides everything I need for today, everything I need to be happy, to be good, the peace and patience, the understanding and the knowledge. As long as I can acknowledge that I can not go through life alone, doing things under my own steam – God will provide what I need and in doing so will bring glory to His faithfulness. When we have nothing left to give, no energy to spare, no emotion left untouched, no tear uncried, no part of our heart not broken – God will fill us up with his peace which will be like no other peace known to man. So Christian remember to stay in today and be thankful for today. Don’t worry about what tomorrow will bring because God will provide what we need for tomorrow, tomorrow. I love you so much.

Love Mommy

Yup - he's licking the glass, at Disneyland....

Today I am thankful for:

1.The smell of homemade cookies when I walk in the door.

2.Sweating so hard when you workout that it rolls down your nose

3.Awesome new songs, “While I’m waiting” – John Waller

DISNEYLAND

Meeting Mickey and the 'gang'

Dear Christian

Hugs all around

It has been many weeks since I have written anything. I struggle when I try to come up with words so I thought if I wrote you another letter the love would flow and the words might follow. I can’t believe that it has been almost a whole week since we have returned from Disneyland. Time is just flying by and I want to find a place to store it in my heart before it disappears!

View from our room (and the Ferris wheel you loved!)

I read a blog the other day that was so inspiring I knew I had to write about it. It was a mom writing a note to other mom’s and Dad’s about truly capturing and remembering the small, quality time we spend with out kids. It wasn’t about our kid’s firsts (as in steps or words) but out children’s lasts. In our case it hit close to home; yet each of us should live each day as though it may be our last or our children’s last. She spoke about being annoyed when her son asking her to cuddle with him while he fell asleep. She was busy and had many other things to do that night. But she reluctantly laid beside him and just at the moment she thought of getting up he flung his arm around her neck and even thought she said it “had the weight of a wet piece of bread”, his arm was like a heavy piece of armor keeping her there, close to him. Instantly her heart was full and she wondered when her son would decided not to ask her to cuddle with her anymore – could this be the last night. 

I think we love each other!!!!

A long week of Disney....aaaahhh life is good!

The scary moment is realizing that most of us won’t know that we have had our lasts with our kids until long after its happened. When was the last night feeding? The last time you crawled in bed with them? The last time they asked you sit with them and watch cartoons? The last time they wanted you to bath with them? Or the last time they grabbed your hand while going on a walk? These are some of the things that maybe we don’t have time for in our ‘busy’ day. But when we sit down one day, 20 years from now, will I remember those lasts? I pray God graces me with the ability to remember. Even to read back over this blog and remember. So please in honor of all the children fighting to live another day – take the time to truly immerse yourself into your child’s life. Hold them, kiss their noses and touch their cheeks with your hands. Hold their little faces and tell them how much you love them and how proud of them you are. Lay beside them when they are sleeping and feel them breathing on you and watch their chest rise up and down. See how peaceful there are and imagine what they could be dreaming about. Hold their little hands while they are sleeping and feel how soft and limp they are – how fragile our children are and how much they need our physical touch and love. God bless this woman for opening my eyes to these things. (I am sorry I can’t reference her I don’t remember whose Facebook page had the link).

What a trip to Disneyland without Teacups!!!

Well Christian we just came back from the most amazing vacation ever!!!! I don’t even know where to start. The special moments are almost too numerous to write about. I have written a very long letter about our vacation but it would take up a whole week of blogs so I will try to abbreviate it for you!

We walked into the airport early on Sunday morning (after you asked me if it was still the middle of the night!) and were greeting by the staff of the Make A Wish foundation and from Jersy City, who were partial sponsors for our wish. We boarded the plane, you got a quick tour of the cockpit and off we go! When we disembarked off the plane in Anaheim you were greeted by Darth Vader’s anthem – so the whole airport knew who was getting off the plane! PS Westjet is just about the coolest Airline EVER!!! We quickly made our way to the hotel, checked in and off we went! The first day was complete with Lego store shopping; eating dinner on the patio in Downtown Disney, a monorail ride though Disneyland, a few cool rides in Cars Land and finally VIP seats for the most amazing fireworks show ever! And this was just the first few hours!

Learning the skills of a Jedi Knight

Christian with the 'wish' genie

You loved the 'wish lounge'

Monday morning arrived, which was your official “wish” day. The Orange county chapter of Make A Wish organized a private meet and greet with Mickey and his gang as well as a session to become an official Jedi Knight by fighting Darth Maul (This is what your wish really was – to fight Darth Maul).  So off we went, you took in a few rides and made our way over the wish lounge (set up for wish families) where you got to meet Mickey Mouse, Minnie Mouse, Donald Duck and Pluto. It was so cool and remarkable to see the characters up front and live – they were so excited to meet you, Evelyn and Ryan. Unfortunately Evelyn wasn’t crazy about touching them but she was still eager to see them (as long as they didn’t touch her!) After we took lots of pictures, played and colored with the characters and Goofy played with your make a wish hat, we were off to Tomorrow land for your Jedi Training.

He was a bit slow.......hahahaha

You were ‘chosen’ from the crowd of screaming kids and made it front and center with the Jedi Master. You quickly learned the moves and didn’t smile once, as if you were taking your job VERY seriously. Your moment arrived quickly when Darth Maul was pacing in front of you – waiting to get his hands on you. He approached you and you immediately crouched down and began slamming him with your light saber. I was so proud! You had your feisty face on and you just kept moving. It was such a special moment – I will admit I did shed some tears. I was just so proud and happy for you, that you finally got to do the one thing you have been asking to do for the last year.

After the Jedi training we had a special meet and greet (although the characters from the dark side didn’t seem to want to exchange pleasantries!) with Darth Vader, Darth Maul and the Jedi Masters. As Darth Maul approached you and sneered, you didn’t back away but instead lunged at him and punched him in the family Jewels (well almost!) I can still see his yellow eyes as they beaded out at me in shock, it was then and there that your fight became so unbelievably obvious. This is one of the main reasons you are still alive. You are the bravest fighter ever,

Add caption

The rest of the week was filled with amazing rides, shows (Aladdin and Disney Junior), lots of swimming at the pool, riding the water slide, having character suppers and breakfasts, shopping at the Disney stores and many more Character meetings. I learned that you are fearless when it comes to rides, the bigger the better! Star Tours, Radiator Racers, Goofy’s roller coaster and the gigantic Merry Go round were your favorites. I learned that you are sweet, kind and not afraid of anything. You even gave yourself a massive bloody nose at the pool when your face decided to get a closer look at the edge of the pool -and soldiered on to ride the slide some more! When you met Mr. Incredible and your daddy told him that you used to watch him almost every night when you were in the hospital (and many more) he was so proud and you lifted up your shirt to show him your cool battle scars. I think it is true – you might be the new Mr. Incredible.

Christian and Frozone

The other very cool thing we got to do was to drive down to Coastal California and see Laguna Beach and golf at Pelican Hills. (Thanks to Aunty Ryan who organized this for us!) It was a spectacular day with nice food, feet in the ocean and clubs on the greens.

Laguna Beach

Pellican HIlls Golf course

Cinderella telling you a secret!

When it was our time to depart we were exhausted and full of the magic of Disneyland. I have a hard time describing to people how the vacation was. There are many words to describe it; magical, thrilling, cheerful, exciting, happy and stressful at times. But the thing that I enjoyed most about our vacation was watching you enjoy yourself. I know how hard you have fought to be with us and it was like you finally received the validation your deserved. People saw your Make A Wish shirt and were so amazing with you. The characters always gave you an extra hug and understood that you and your brother and sister are so special. I was so happy that we were able to create an environment where we could honor you and your fight; we could congratulate your desire to live and your zeal for life. I am so proud of you, Evelyn and Ryan and once again I am ecstatic to see what the rest of our lives have to hold. God bless you Christian Crowell, Jedi Knight.

love Mommy

Evan did love Minnie Mouse! They pretended to be kitty cats together!

A little love from Goofy!

Today I am thankful for:

1.     Make A Wish Foundation

2.     Ice cold pop when its +35

3.     Swimming pools for the kids and soft lounge chairs for me to watch them from

So brave!

His favorite thing to do.....

Three Hours

Loving my Make-A-Wish swag!

1105 pm at night. Hours before we leave for Disneyland and I am sitting in bed with Christian scared out of my mind. I was just texting a friend saying that I am in such a weird, funky brain place of being scared yet full of faith, tired yet so excited for what God has planned for us. To tell you the truth I am so drained. TIRED. Not just physically tired but emotionally spent. Not the kind of emotional fatigue that comes with Christmas holiday or planning for some grand event. I am tired like my brain can no longer receive and process information, so unable to even come up with prayers, unsure of what I even need to pray for. People ask me about Christian and I don’t know what to say. Do I believe he is cured? Most of the time, but when I talk about the science and medicine it scares me. Sometimes I have this revelation like I must be crazy….this cancer is so vile and dangerous and powerful…it is surely coming after him again. My only respite is to continually picture those hands of our God tightly clasped around my life, around my kids and my husband and knowing that He has good for us. Not just good for us, He wants to give us everything that He can. Like we, as parents, want to do the best for our kids and give them all we can and do all we can for them because that is what we do. So I need to remind myself that my God loves us at least a million times more and will do one trillion times more good than I could ever muster. So rest my heart. Don’t be afraid Megan. Pray that you don’t know what to pray for. Pray against your fear. Pray against satan and his pitiful attempts to lure me away from God.

Love playing with Evelyn!

When I get scared and unsure I ALWAYS think back to the night of Christian’s surgery. The night that God revealed himself to us. Revealed Himself to us in a way I didn’t know existed. I have often spoken of the details of that evening and how everything came together as only God could organize. People have constantly reminded me that our God is a God of details. One very amazing detail that I never blogged about happened while I was sitting with Loralie outside the operating room. We sat there on these weird shaped couches looking at each other, completely broken. I can still the look in Loarlie’s eyes, they were so full of sadness and sorrow. I was so exhausted and full of fear that I couldn’t pray, move or think. I was completely and totally broken, I had nothing to offer and no hope left in my heart. My soul was convinced that Christian was going and I began my grieving.  But Loralie looked at me and said, we need to give God a chance. She spoke about David and Goliath (which I have previously talked about) and about standing up for God She said to me, “Lets give God three more hours to see what He can do”. I don’t know why she chose three hours and I was in no position to argue. I agreed like I had no other choice and I needed something to cling to. So she prayed that God would use these next three hours to show himself to us, even if we didn’t believe. This was at about 930 (ish), we slowly made our way back to his room to be with family. It was almost midnight when our nurse received a call from the surgical suite to say that everything was going really well but it was going to be another two hours. So everybody went home. Chris and I dug in and readied ourselves for another few hours of anxiety. The rest most of you know – Dr. Brindle came in and told us about taking out the tumor, about the other surgeons reservations and what she had been able to do for Christian. What I didn’t realize until days later was that when she walked into our room at 1230 (ish) it was almost exactly three hours from the time Loarlie prayed that prayer for me. That even though only 30 minutes before hand they had told us it was going to be another two hours, God kept his promise and showed us His amazing glory, in three hours.

Self portrait - what a silly!

Our God is a God of details. And because my friend was faithful enough to ask for certainty, for something tangible to lean on, God answered her prayer. I have never in my life experienced anything like that night. God revealed Himself in such an amazing way, on so many different levels that I cannot deny Him. Yet on a daily basis my fear overcomes everything about me and I forget. I am so thankful we have a God who understands our shortcomings and loves us anyways. I am so grateful that God organized our friendship with the Phaneuf family, the He felt me a worthy person to stand beside them to learn and to be a voice for Him.

Sat like this on the sidewalk for an hour
waiting for his cousins to come and play!

Sunday morning at 930 am we will depart for California and Disneyland courtesy of the amazing Make a Wish foundation. They have some amazing things lined up for Christian to do. None of us who are traveling have ever experienced the park and I am so full of excitement. I am giddy with anticipation, eager to see the looks on their faces when they shake hands with Mickey Mouse, Donald Duck and Darth Vader. Somebody posted the most amazing quote on the Hope for Christian Crowell FB page. I never asked this person to quote them so I pray they don’t mind!

“Mickey Mouse do you know who you are about to meet?? He is no ordinary little boy you know. He has a purpose that is all mapped out and he is a walking miracle. “

I wish I could write his whole story on a T-shirt for everybody to see so they can know how God is guiding and moving in our lives. How much of a fighter he is, how he has changed our lives and taught us about hope and true love, love that surpasses grief, fear and death. He is my Mickey Mouse, my Winnie the Poo and I am so proud of him.

BLESSED

Today I am thankful for:

1.Our God of details

2.Hottub parties with all the kiddies at Uncle Peder’s

3. Make a Wish foundation

Mighty man of valor

I have been staring at a blank screen for a while now. People who know me understand that speechless is not a word that floods the mind when describing me. In fact I have a horrible habit of cutting people off and not letting them finish their sentences. Then I spend the rest of the day feeling like a fool recounting the times when I cut people off in mid-sentence and praying people still want to have conversations with me.

In this matter I long to follow scripture James 1:19, “Know this, my beloved brothers: let every person be quick to hear, slow to speak”. If I could train my brain to slow down I know I would be a better listener, mother, and friend. I am always wondering and asking God, ‘what are we supposed to be doing with Christian? Are we supposed to be in the hunt for alternative treatments? Should we take out his dreaded G Tube? What do we do know? What are we supposed to be doing? But I hear nothing because I am very rarely still, I rarely take time to be quiet and just listen.

Surgical scar and dreaded G Tube

I had a conversation yesterday with a dear friend about hearing God, about finding peace amongst uncertainty, about standing boldly and being confident in the now. I continue to write about this because it is a constant source of contention for me. How do I find peace on a daily basis? How do I open my heart to be led? There have been many things happen in my life that have promoted and encouraged me to seal off my heart. To protect myself against those who don’t approve of me, to protect my heart against loss, and for self-preservation. If ever in my life I need to listen, to be still and open my heart, it is now. So I prayed that God would open my heart and help me heal…then this happened.

I turned on the TV and I listened to a man speak (somebody I have heard of but never listen to before today). He asked the question, “Are we a victim to our circumstances?” And his answer was of course – no. I absolutely cannot sum up his words in a few short paragraphs. But I will remember these words forever; “God is like a rock solid fortified fence around us, his hands closed tightly at the gate. Once we accept that He is our sovereign God, we can understand that the only things that can enter are things that he allows. He has to open his hands (displayed unclasping his hands) in order for things to come about. Everything that happens to us is carefully orchestrated and planned. And we know God is good, and he only wants good for us. So if He opens his hands to allow something or someone to enter or he allows something to happen to us then he KNOWS it is good and will work out for good. Just as the song Amazing Grace has been crooning for 200 years, “the Lord has promise good to me, his word my hope secures”.

So on this thanksgiving day instead of being thankful for what we have, I will be thankful for what we don’t have. Because God has provided us with exactly what we need.

Christian is doing splendid. It has been a long week of playing, gymnastics, play dates and sleepovers. Evelyn and Christian were so excited by Nannies arrival last night. I cannot express the relief of having another set of hands to play with the kids and give Chris and I some time together. It has been a very long and tedious year for us and the quality time we spend together has pretty much vanished. I look forward to reconnecting with my husband as we try to lead our family in faith and love. Arguments rise, tempers flair, backs go up and feelings get hurt. I pray, and ask you to pray as well for Chris and I as we attempt to fuel our family with positivity and love.  One week from today we are leaving for Christian’s Make a Wish trip. He chose Disneyland in desperate hopes of getting to meet and duel Darth Maul. He kind of scares me with his ‘Satan like’ face but I figure if my little stick figure of a boy can battle cancer, Darth Maul won’t stand a chance! We are so grateful for the Make a Wish foundation and everybody who supports this amazing organization. We feel humbled that people would want to do this for our family. It is with great anticipation that we dream about Castles, princesses, Disney breakfasts, amazing rides, beautiful shows and heart lifting music. Time spent by the pool, walking the grounds and enjoying being together as a family and not thinking about cancer. We have known about the trip for a while but it was with great trepidation that I spoke about it for fear that Christian would get sick before we had a chance to go. This is a true struggle. I can say yes I trust in God and I trust that all will work out but the fear is always lingering, the door is cracked for satan to speak into my head. I am constantly praying against this fear, I am constantly asking God to give me strength to battle the demons that come after me when its dark and Christian moans in his sleep. I ask that you would pray against this fear. That it would be made clear without a shadow of a doubt that Christian is free from disease, that God’s great plan for him to become a “mighty man of valor” comes to fruition and he will lead many people to God and God’s light will shine through him.

Today I am thankful for:

1.Ryan’s new favorite phrase, “mommy, I need you!” “Daddy, I need you”

2.Meeting with friends, talking and then feeling so full of hope and optimism

3.Hot tubs

First Snowfall

can you feel the love?

Weird, unexplainable, bizarre, limbo: so many expressions yet still not the right word to describe how I have been feeling. When people ask me how Christian is doing – what do I say? My child with incurable cancer is doing amazing! We had some professional photos of our family taken last weekend. And when I look at the pictures, more specifically when I look at Christian, I have never felt more confused. He looks unbelievable. His eyes shine, his hair is long, his cheeks are full and his spirit just shines through into the camera lens? How can this be a child with terminal cancer? I guess the proper answer is that he is cured.

Everyday I feel myself getting more comfortable with my routine, my emotions and the way I handle my priorities. A few weeks ago I didn’t even want Christian to leave my sight because I didn’t want to lose a single second with him. Now when we are apart I don’t feel anxiety – and that alone gives me anxiety!!! What? I fear my lackadaisical approach to the days will come back to bite me in the arse and I will wish I had done things differently. How do I learn to trust my heart? Is the discord between my heart and my brain coming across on this page?

Well I don’t have the answers. I don’t know what the right thing to do is. I pray, pray, pray that we are making the right choices, we are focusing on the right things. That my heart, even though life has its way of shifting you back to normal, continues to follow God. And that having this unfailing trust in Him would be our new customary. We so desperately long for life to be normal but the constant ache of cancer remains in your head. Its almost like things are too good, too easy. The Crowell way always seems as though something has to go wrong at some point. Isn’t this how I have learned all these lessons? We are brought to our knees and sink our faces into our hands and say, “help me”. They say you don’t know the sun until you have seen the rain. Well all I see now is sun but I worry that as we forget what the rain looks like our perceptions and focus in life begins to waver. The only way is to  REMEMBER. I think I may get this tattooed across my forehead so it will never leave me. Remember how horrible life has been, how sick Christian has been, how each time we felt as though things couldn’t get worse – they did. But each time we were brought to our knees God was there to console us, carry us and lift us back up onto our feet. And each time we were lifted our relationship with Him grew stronger. Like learning to trust a friend who always shows up on time. A friend who seems to know the answers, even though it wasn’t the answer you thought you were looking for.

Not until this last round of horror with Christian did I really learn to trust God. I always thought I had a good relationship with God, but did I really know how to trust him? No I didn’t. Because I thought we were still in control of everything. I understood the science; we spoke with doctors and made our own decisions. But I never asked God for the answers because science always gave us some form of hope.  I never said to God, “Whatever you want – I know that You love Christian more than I could ever imagine and you want what is best and I trust you will only bring good to him”. That kind of trust never developed for me until I thought he was going to die. Then I had no choice but to say, “ok – here you go”. And when I finally accepted God’s plan, his sovereignty, He gently handed him back to me. Now I understand what real hope is. My computer died last night while typing this blog and instead of getting up and plugging it in I thought it maybe God telling me to go to sleep and finish tomorrow. When I woke up this morning I randomly grabbed my focus magazine and this is what I read, “G.K Chesterton observed that hope only has any real meaning when things are hopeless, ‘As long as matters are really hopeful, hope is a mere flattery or platitude, it is only when everything is hopeless that hope begins to be a strength’…when we face an impossible or hopeless situation, we must learn to wait patiently on the Lord. We do not need to be anxious or worried. We can find peace in God’s unfailing love for us”.

H.O.P.E

So this has brought me to where I am right now. Stuck between listening to science tell me his micro disease is hiding in his body waiting to come after him again and listening to God who says, “it is done, you can trust in Me and rest your hope in Me.  Can I take this terminal diagnosis and stick where the sun doesn’t shine? I am trying…..

Today I am thankful for:

1.the first snow fall – sorry – but it brings me such amazing peace and the feeling of sitting in the char with the fire on, blanket on my lap and coffee in my hand is so great!

2.Christian coming downstairs to ask me for help this morning, “because daddy is sleeping and I didn’t want to bother him”

3.Amazing birthday presents….thank you Chris!