The Fun "1"

Our baby boy has graduated into toddlerhood. Elijah had his first birthday last Friday. Brian went to work for the first time that week, since we had been iced in. Most places were closed. People were ice skating and skiing on the streets of downtown Atlanta. The Tuesday before was supposed to have been Elijah's last chemo treatment, but the weather chose differently. It would have been an easy-to-remember 1/11/11 at 11:00 appointment. Oh well. Next Friday it is!

We "celebrated" with a birthday dinner at a diner down the street, that was short-staffed and out of dessert. We then looped around town, snubbing "cool treats" for something warmer. We ended up at Dunkin Donuts, also nearly out of sweets, where we impaled a powdered munchkin with a stir stick and sang "Happy Birthday" to Elijah. We tossed Elijah a large $3.99 Blue ball, because (apparently) him enjoying his present is more important than me feeling good about it. (:grin: I love you, Brian!)

While we're on the subject, my brain is still whirring - disoriented and perplexed. We (i.e. Brian) went birthday shopping at Target and spent $8, and half of that was the birthday present. H-how did he get out of Target for $8? Th-there were $4 boys' shirts..a-and half-price Geotrax, and...sales! Glorious sales! I sit here trying to make sense of it all, wondering what I will say to my Am-Ex, still quivering in my pocket.

Well, Elijah likes the ball. Over Christmas vacation, he transitioned from mostly crawling to mostly walking, so chasing a belly-high ball is right up his alley. Besides, he had a proper party in Florida.

I'm still amazed by the things he's already figured out. The other day, I tried to zip through a shower, while Elijah banged at the shower door, sobbing on his waffle. I quickly dried off, calmed him and handed him back his soggy waffle. He mouthed it, decided he didn't care for it anymore, and waddled over to the trash and dumped the waffle. That would be handy if I didn't keep finding perfectly good sippy cups and books in the trash too.

Today, at breakfast, Brian began to say the blessing and Elijah babbled something and put his hands together in "prayer." I've also seen him signing "change," "up," "open," "book," "more," "eat," and playing along with "pat-a-cake." As far as actual words go, he says our names fairly clearly, but most everything else is a repetition of sounds and cadence. He's pretty adept at sound effects. He even does an unfortunately good representation of a scolding expression and voice, before giggling at himself. He has a great sense of humor.

He knows all about doors, socks, shirts and cars and concentrates quite hard on making them do their respective "things." He entertains himself "solving" boxes with lids and shape-sorting toys. His frustratingly solid object permanence abilities make him very hard to distract. This is all typical, but it never ceases to amaze me how quickly a baby can figure out his world.

He's an agile climber too. He zips up steps and onto riding toys, which he frequently tries to use like a scooter. When he doesn't want to be held, he's very hard to restrain. He's one determined boy.

I feel so blessed watching him grow, and seeing how unaffected he is, considering all he's been through. I remember all the prayers, meals, visits, donations, calls, cards and more from hundreds of friends, acquaintances and even strangers, that gave us the strength and comfort to endure Elijah's trials. God is so good and has held our sweet boy tightly in His hands, and has brought so many great people into our lives. I can't wait to see what He has in store for our little one as he grows!

23

The Lord is my Shepherd. He has provided.
I bask in the wholeness of my family, drinking up my sons and finding in each a unique and intoxicating bouquet. Again I smell, kiss, envelop the child for whom I've trembled. He grows so strong, snuggled in his garments, the tightly-knitted prayers of a multitude. His laughter is a resounding praise to the Architect of galaxies and dragonfly wings.

I exhale into a pillow of His calm refuge. I feel warm rays of relief seep into the window of my soul.
I search my heart for the will and wisdom to teach my treasured ones Your love, for it is all that matters.

I have crawled to the edge of a ravine so fearful and desolate, at which my eyes plead to never again glimpse. Yet, when collapsed on my knees in helpless petition, how much closer I am to You. Your rod has steadfastly conquered lions. Your staff gently nudges me to safety. I am secure in Your stronghold.

I am blessed beyond measure. May I not fail to seize an opportunity to fill another's cup.

Holding hands, my husband and I take humbled, hopeful and passionately prayerful steps, guiding three precious little ones toward manhood. We rejoice that You will persue us with Your love, every breath of our lives, for we are but ignorantly wandering lambs. May we five relentlessly look to You always.

Wait Lifting

As I wait again in the family waiting area for a NICU surgery to wrap up, I'm reminded of the difficult lessons I'm learning. The first is patience. I'm learning that God has a timeline and I'm better off letting go of mine and embracing His. I have a matryoshka doll of "waits" bobbling in my mind. I have the big waits of wondering when my baby will be healed and when he will be home. I have littler waits nested within of when will the chest tube come out? and when will the doctors trust our breastfeeding to grow his body? There are surrounding waits of when will the NICU let us back in so I can see my baby? and when will the doctor tell me about the last scan?

My whole day is a succession of waits, big and small. I'm not good at waiting, at least not through all these unknowns. If God could just send me a messenger to say, "Elijah will be fine and you will be home together soon," I could wait in peace; If I knew it would all work out, I could endure almost anything in the meanwhile. Over the last 8 weeks, I think I've been decompressing a bit. My 6-week hopeful mental deadline came and went with no homecoming. I've let go of trying to guess when we'll have him back and have relaxed into knowing he is where he should be. He'll leave when the time is right. I'm trying to lift my waits to God and believe that the "whens" don't matter next to God's will. Our world is in His hands.

As I sit here moping, I tear up a bit when I see a father across the room hang up his cell phone and burst into a relieved cry, "She's okay!" The family circles up for hugs and a prayer of thanksgiving. It was his daughter's surgery I was waiting on to get back to see my son. He was waiting for her life. As my waits are put in perspective, I want to jump up and join the group hug to celebrate with them.

My second, and equally-challenging lesson is relinquishing my self-reliance. Floods of offers for help have come in from friends, family and acquaintances. For the first weeks, I couldn't think of what I needed, aside from stability for our boys, which family was providing. I wasn't sure there was anything to need. I felt bad because I could tell people genuinely want to help, but I've been so autonomous I couldn't come up with anything. Finally, someone, not knowing the wisdom of her actions, practically forced help upon us. We, very uncomfortably, accepted lunch for a week from near-strangers.

I felt very humbled, if not a little uneasy, to have meals delivered to the hospital each day by people who spent the time, effort and money to cook or order them. Quickly, though, the blessing manifested itself. The warmth of a tasty meal, delivered in love, nourished our hearts and bellies. We had something wonderful and reliable to look forward to each day. That gave me the courage and humility to ask our devoted church members for a few meals we could keep in our deep freezer for those evenings when we don't have enough juice left to cook. Someone passed out 42 casserole pans in church and from that day we have not had to cook a single dinner!  What a blessing and a relief!

I don't know why I developed my independent nature. It's been too important to me to solve my own problems and meet my own needs. It doesn't make much sense to me, because in the other direction, I'll do just about anything for just about anybody for the sheer joy of helping someone. I like to be a contributor. So, why is it so hard to be a recipient? Why is it so uncomfortable for me to feel so indebted to so many people and to know I could probably never repay each person, and *gulp* could probably not even list each person that has helped us. Why do I feel the need to repay deeds that were done without expectation, and perhaps even causing offense if I tried? If I were to think as a giver, I would want my recipient to feel at peace with my gift - to feel relief from the burden that has been lifted by my gift - and to go about her day, free to focus on what matters.

As I write these words, I'm seeing a big blinking arrow pointing to some important truths. People need people. We weren't meant to handle everything on our own. Sometimes a harder lesson than learning to give is learning to receive - to accept what we need from those who freely give. Most importantly, I'm reminded to daily accept the gift of life that God had freely given. We each need to accept it with gratitude and peace, understanding that we will never deserve it, earn it, or be able to repay it. We owe no debts; we've been freed to focus on loving Him and each other. What a blessing and a relief! 

The Elijah Cannon: Part 4, Treatment Begins

I was amazed by the size of the CHOA Egleston NICU, the quietness of it, the professionalism, and the hosptality. We could tell immediately that they had "it" figured out here. They understood that the experience was more than a baby in a bed - that each baby comes with a family, and each family comes with fears and needs. We were almost immediately grateful for the transfer. We came to realize that we never really had that "left to dangle" feeling. It seems like down almost every hallway, someone would stop to introduce themselves and genuinely address our emotional and physical needs. A social worker spoke with me first and let me cry out Elijah's story on her shoulder. She addressed the issue of finding a way to spend time with each of my children that I could feel good about. She provided us resources for trying to find a place to stay and ways to try to get financial aid. Then a chaplain met with us. Then an ambassador. They've all been very accessible and in regular contact. Every nurse and doctor explains what they are doing to Elijah, as well as what steps they are taking to ensure his comfort and safety. If we are away, they call us on our cell phones to keep us posted. They treat Elijah with gentleness and compassion and us with respect. They encourage our involvement in his care and help us feel important to the process. They've done the neatest "extra" things too. They gave us a journal to write in, and occasionally, the nurses write a note in it from them or from Elijah. I was also given some Mommy Love Squares - crocheted squares I can wear close to my heart and leave with Elijah so he has my scent near him when I'm away. One nurse also made Ian a big brother book out of photos she had taken of Elijah, and wrote a story in it and illustrated it with some stickers and scrapbook supplies.

The facility has sleep rooms, handed out nightly on a lottery basis. We tried that for a couple nights, until we decided it was more beneficial to sleep at home. They have showers, lockers, laundry machines, a work out room, pumping rooms for breastfeeding moms, a business center, a snack room, a library, classrooms and more. Parents get very discounted meals and parking, and breastfeeding moms get free meals.

By the following Monday, Elijah had a Central Venous Catheter surgically implanted, a bone marrow biopsy taken, and an X-Ray, PET scan and MRI. Tuesday, he started chemotherapy with Vinblastine to be given weekly and Prednisone given daily. The tests confirmed lung, lymph, bone marrow and possibly spleen involvement. That was hard to swallow, but by then we already knew that the initial treatment would be the same, regardless. We also understood that this chemotherapy was different than cancer chemotherapy, in that with cancer, treatment starts aggressively, whereas with LCH, treatment is started slowly and built up as needed. His side effects were expected to be minimal with the low doses he gets.

Elijah had been intubated for the surgery, but when they tried to extubate him, he didn't do very well, so they put the breathing tube back in. A bronchoscopy showed significant swelling and lesions in his upper airway, which were restricting his breathing ability. He also got a blood transfusion to try to give his system a boost. After his first dose of chemo, on Tuesday, January 26, his skin actually seemed to look a little worse, which wasn't an unusual response. Wednesday night, our pastor and some church elders came in to pray with us and Elijah for his healing, and read from James 5. It's ironic and reassuring that the passage speaks of the great prophet Elijah's faith.

I don't know why, of all the times I contemplated it, I chose that night to finally show Ian and Isaac pictures of Elijah. I'd been trying to hold off for Elijah to look "good", but enough people convinced me that at least Ian could understand and "handle" the idea that Elijah needs some special medicine and help from the doctors and nurses. I did choose one of his earlier photos, when he had more spots, but just a feeding tube. The boys loved the pictures and didn't seem at all concerned about how he looked. It felt so good to "introduce" their new brother to them. Ian said, "Come out of the picture, baby Elijah!" He hugged the picture to his chest for quite a while, occasionally looking at it or kissing it. The next morning I got some tape and Ian taped the photos to the wall. Throughout the next days, he would occasionally move them all to a different wall. Sometimes one of the boys would pull down a picture and carry it around for a while.

Shortly after, we were talking to one of the neonatologists, and he arranged to sneak Ian in for a visit. Ian thought it was very cool to wear the special mask, and he climbed up on the chair at Elijah's bedside and gently touched his leg and belly. He seemed captivated. He looked all around at the machines. Elijah was on a ventilator at this point and Ian pointed to the screen and said, "This goes all the way to baby Elijah". He got down and inspected the bed and the drawers and wheels and buttons. He stayed so quiet and gentle. It's frequently hard to tell what Ian thinks of something. When we asked him what he thought of Elijah, Ian said, "He's good."

Friday was the first time I'd really seen Elijah smile. He must have grinned because he was hatching a plan. That night, he surprised us by losing a tooth we didn't realize he had. Then, on Monday, he extubated himself and was breathing more calmly than I'd ever seen him breathe since he was born. By Tuesday, his nasal canula was removed and he was breathing great on room air. That day, he had his second dose of chemo. Wednesday, he was moved into a regular crib. His tube feedings of breast milk were gradually increasing. Friday, we joined our church family in a day of fasting and prayer for Elijah's healing. That night, he was moved to the step-down unit. On February 9, he had his third dose of chemo and the next day, his Morphine was discontinued, since he hadn't needed any in a while.

By Friday, February 12, Elijah was in great shape. He was up to full gravity feeds and was having success with small bottle and breast feeds. He was spending a lot of time alert, happy and active. I felt pretty spoiled, coming in every day and holding him for hours, talking to him, singing to him, smelling him, and soaking him up. Very early Saturday morning, we got a very surprising call. Elijah was back on the ventilator. They weren't exactly sure what the problem was, but Elijah had been cranky, breathing hard, and grunting. They suspected sepsis. Hours later, we got another update that he was not septic, but instead had a pneumothorax. One of the LCH "bubbles" in his left lung had burst, causing air to escape from his lung into the space around his lungs, collapsing his lung. They aspirated the air out with a needle and observed him for a while, but eventually inserted a chest tube. Later, we were shown the X-Ray, and were amazed to see that the lung had collapsed over so far it was pushing his heart into the right side of his body. His body had compensated really well for the event; apparently he had gotten just a little pale and mottled, but didn't have a really severe reaction. That probably had a lot to do with the staff being so attentive and moving quickly to his aid.

Saturday, we had a big snow, for our part of the state. We couldn't safely get to the hospital to see Elijah, and maybe it was just as well, since we would have felt the need to go, even though he would have been sedated all day and not looking so well. Sunday, Brian, his mom, the boys and I all drove up to see him. We took turns keeping the boys distracted while the grown-ups visited with Elijah. He was pretty alert and seemed as comfortable as could be. We pretty much plowed through the fact that it was Valentine's Day, and Elijah's 1-month birthday. Holidays have pretty much shriveled up into meaninglessness these days. Brian and I did make a point the week before to try to have a dinner date, but we couldn't really shake the cloud over our head. We just talked about our poor little boys the whole time.

Monday, the 15th, around noon, Elijah was extubated and has handled that fine so far. The next step is to get the chest tube out, when the X-Ray shows no more air in the wrong spot. His chest tube is currently on water seal, which means the suction is off. He handled his first full gravity feed, since his pneumothorax just fine.  I imagine, or at least the hope is, he'll progress to back where he was last Friday, and we'll start those scary/exciting discharge discussions again. It's relieving that this happened while he was still here, but it's very scary to think there might be other time bombs in his lungs, that we may carry home with us at some point.

My brain doesn't really know what to do with all of this. I'm craving a home life with the 5 of us together, but I fear it too. There will probably be months and years of wondering if he'll ultimately be okay. He's been a strong boy since birth, yet so fragile too, at the mercy of the beast in his body. I have no doubt, watching him go through all of this, recovering so well over and over, that God is holding His little boy in His hands and has plans for him. It crushes me to see what he has endured, not seeing an end on the horizon, knowing he's been a month on this earth and has experienced only the sights and smells of the hospital. I crave for him to know what it's like to have two bigger brothers kissing on him, and to spend his days and nights nursing at his mother's breast and dancing in his father's arms. Some days I feel assured it will happen. Other days, I make the mistake of reading too much about other kids' losing battles with LCH, forgetting that their fate has nothing to do with his, and dread that there will be a terrible backslide. He is an amazing little boy with an awesome God. I cling tightly to the promises that God is my strength and my refuge. I remind myself to be still and know that I am God. I feel fairly certain of what I can and cannot handle, but only God knows, and He will carry us through this journey, as He carries us now. He will be glorified through this.

I can already see some of the beauty in this. Completely unrelated social circles of ours, as well as those of our friends and family, have united to support us and pray for this little guy. Strangers and acquaintances from a web board I frequent spent a week bringing us lunches. Our church is still blessing us with dinners that we can pull out of the freezer and heat. We have received cards, emails, prayers and prayer blankets from around the country - the world even. We've been told of people who do not customarily pray, who are now praying for Elijah. Heaven knows this child's name! I choose to believe that little Elijah is surrounded by a bastion of mighty angels, sent from the Father, who loves this boy more than I could ever aspire to.

A Tour of Thanks

Happy Thanksgiving!  I wish you all a day of good health, happiness and fellowship. I feel so blessed for the people in my life.  My husband is the most loving, dedicated man I could ever dream of.  He is my best friend, team mate and life partner.  My children bring me unsurpassable joy.  It's hard not to wonder what I lived for before them. My parents just celebrated their 33rd anniversary.  They are so in love and have made love and life together look so easy.  Through example, dedication and sacrifice, they provide (even still) all I need to succeed in God's family. My brother, sister, and I are the best of friends. They are a continual joy and inspiration to me. My husband's parents are the most amazing people, too. Whether it's advising on a recipe or hopping in the car to drive 600 miles to help with the kids, they frequently drop everything to come to our rescue. They love me as one of their own. Sadly, for almost 6 years now, we've had hundreds of miles between us and the nearest family. It has been so hard. We have been blessed, though, to have friends and a church that have embraced us with both arms and have loved us through the lonely times.

I thank my God every time I remember you. Philippians 1:3 NIV

Being our own little 'island' family has been a challenge.  We are both very family oriented, and it's very important to us to that our kids know their family.  We've all worked hard to arrange visits in one state or the other, and occasional video chats.  Somehow, we've kept up a frequency of contact that our little guys are able to remember their grandparents, great-grandfather, aunts & uncles.  Some facet of the distance has been good for us, too.  It has helped us establish our identity as a family and has forced us to develop our own traditions and problem-solving skills.

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song. Psalm 28:7 NIV

We've had to get creative sometimes with our meals, and Brian has an uncanny ability to withdraw toothpaste from an 'empty' tube.  It seems like just when we don't know how the next bill will be covered, God provides. A gift. An unexpected refund. A raise. It never adds up with human math.

Taking the five loaves and the two fish and looking up to heaven, he gave thanks and broke the loaves. Then he gave them to his disciples to set before the people. He also divided the two fish among them all. Mark 6:41 NIV

I woke up this morning, full of joy.  &;A rich aroma filled the air.  I knew my dear husband had slipped out of bed early to start the turkey.  I tried to sneak out of bed, but by the time I had my sweats on, I heard a little voice inquire, "Mommy...?" I saw little Isaac's eyes peeping out of the sheet.  I crawled back under the covers and he whips a calculator out from somewhere and declares, "Button!" We share some giggles and he flashes me smiles that make my heart melt. I look over at Ian, my little sleeping prince, and it hits me that somewhere between two and three, my first baby became a little boy. He looks so grown. What beautiful, amazing little baby men.

Give thanks to the LORD, for he is good; his love endures forever. 1 Chronicles 16:34 NIV

Isaac and I make our way to the kitchen. Brian not only has the turkey cooking, but our favorite loaf of yogurt bread is baking and he has breakfast ready. What a man, what a man! He never ceases to impress me. I can't imagine feeling more loved and appreciated. He seems to never tire of service to his family and God. I feel like I have more to be thankful for than I can express or ever deserve.

Now, our God, we give you thanks, and praise your glorious name. 1 Chronicles 29:13 NIV

Most of all, I feel thankful for the unending mercy and grace I receive. I mess up every. single. day. I want to be eternally patient and calm with my boys, but I blow it. A lot. I want to be a shining Christian example to them of love and respect, but I blow it. I want to be a cheerful, pulled-together, always-have-dinner-ready wife, but I blow it. I want to spend time every day reading my Bible, praying for my family and living what I believe, but I blow that too. On all accounts I am forgiven. Graciously, perpetually forgiven.

While they were eating, Jesus took bread, gave thanks and broke it, and gave it to his disciples, saying, "Take it; this is my body." Then he took the cup, gave thanks and offered it to them, and they all drank from it. Mark 14:22-23 NIV

What a day to celebrate! It seems amid all the struggles and disappointments, there is always an abundance of blessings for which I express my deepest gratitude.

Thanks be to God for his indescribable gift! 2 Corinthians 9:15 NIV

Happy Thanksgiving!