Fellowship of the Unashamed

"I am part of the fellowship of the unashamed. I have the Holy Spirit power. The die has been cast. I have stepped over the line. The decision has been made--I am a disciple of His. I won't look back, let up, slow down, back away, or be still. My past is redeemed, my present makes sense, my future is secure. I'm finished and done with low living, sight walking, smooth knees, colorless dreams, tame visions, worldly-talking, cheap giving, and dwarfed goals.

I no longer need pre-eminence, prosperity, position, promotions, plaudits, or popularity. I don't have to be right, first, tops, recognized, praised, regarded or rewarded. I now live by faith, lean in His presence, walk by patience, lift by prayer and labor with power.

My face is set, my gait is fast, my goal is heaven, my road is narrow, my way is rough, my companions are few, my Guide is reliable, my mission is clear. I cannot be bought, compromised, detoured, hired away, turned back, diluted, or delayed. I will not flinch in the face of sacrifice, hesitate in the presence of the enemy, pander at the pool of popularity, or meander in the maze of mediocrity. I won't give up, shut up, let up, until I have stayed up, stored up, prayed up, paid up, give up till I drop, preach till all know, and work till He stops me. And when He comes my banner will be clear!"

These words were penned by Dr. Robert Moorehead in his book Words Aptly Spoken and shared with us this morning by Dr. Alan Ginn.

I have no words right now...just letting these sink in...

Notes from a Dragon Mom

I realize I have not blogged for over a year now. A recent article I read touched my heart in such a deep way that I felt I must document it and not let it pass like those fleeting FB statuses.

On October 15, 2011, Emily Rapp published an essay called "Notes from a Dragon Mom". I have included it in its entirety. I know I will be coming back to this over and over again in the future years to give me the needed perspective as I, Lord willing, continue to have the privilege to be the mother of my two girls. Thank you, Emily, for sharing your story, your life and your lessons.

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Notes from a Dragon Mom by Emily Rapp
Published October 15, 2011



Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Lessons learned from a trip to the supermarket

Interesting how lessons can weave into a simple trip to the supermarket...

Numbers - "Ally, can you please read me the item numbers of the trail mix we want to buy?" "Yes, that's a 6, where the circle 'sits' on the bottom."

Phonics - "That's a great song about joy! Can you think of a word that rhymes with joy? Why, yes, toy! They have the same ending."

Home economics - "Wow, these nuts we want to buy used to be $3.99/lb but it's on sale for only $2.79/lb. That's a good price. We can buy the same amount without spending as much money."

Social behavior - "No, you cannot open that because we need to pay for it first. Things in the store do not belong to us until we buy it." "Sweetie, we need to wait here because this is where we line up to pay. Let's stay behind this nice lady and wait for our turn."

Being a helper - "Thank you for handing a bag to me, Abby!" "Can you please hold this for me, sweetie?" "Hold it gently because the fruit might bruise...yes, good job!"

Nutrition - "We need to eat rainbow colors in our food because that's good for our bodies. See, the carrots are orange. What else do we have? Yes, the pears are green, great!"

Manners - "You want to get down, do you? You need to ask nicely right? 'Mommy, can I come down please?' Yea, that's much better. Good." "Oops, excuse us." "Let's say 'thank you' to uncle who helped with our bags. Thank you!"

Delayed gratification and self-control - "No, we don't need to buy that because we have snacks at home. Maybe we can get some when we get back, ok?" "You can hold on to it, but please wait until mommy says ok before you eat it. Thanks."

Simple pleasure - "Wasn't that so fun to go to the market? We got to see so many cool things. And look all the fruits and vegetables we've got! It'll be great to have some of this for dinner tonight, huh?"

It was a good trip to the supermarket today... :)

Still holding my hand...

Today we went to Kahalu'u Beach for snokeling. We have never been there before and even though it was a recommended spot on those travel sites, it looked a little disappointing at first. The weather was a bit cloudy today and the water did not look the beautiful turquoise color like the sunny part of the coast. The beach was not white sand, but dark and tiny gravel like. I brought all the kids' beach toys hoping that they could "play in the sand" but this was not the kind of "sand" I had in mind.

When we went into the water, it felt SO cold! Abby, being an oblivious 2-year-old, actually let us take her out the shore a little bit. Ally, being a very conscious (and timid) 4-year-old, simply refused to get wet above her chest. Isaac basically sat with her on a rock a tiny bit out in the water while I walked the shallow ways out with Abby. After the kids were "done" with the water, our fun finally began, with many thanks to our parents... :)

The water no longer felt cold after awhile, even when we went in and out of it. The amazing thing about the warm breeze was that we did not freeze ourselves coming out of the water like in CA. I was trying to snorkel with my Dad's gear with not much luck and I was not used to the super salty water or swimming in the ocean for that matter. Then Isaac came out with me and told me to forget about the gear and just hold my breath. He would stay with me and hold my hand.

We felt warm in the water and saw many many tropical fish. Some were big, more than a foot in length. Others were smaller but greater in number. There were blue iridescent ones, bright yellow ones, black/white/yellow striped ones, silverish pinkish scaly ones, bottom feeding ones, simple gray ones, orange spotted ones, beautiful multicolor ones, and others too difficult to describe! It was a beautiful experience to see more than a dozen kinds of and probably over 100 tropical fish, some almost close enough to touch! :)

I am not sure how long the two of us were out there, but it felt like no time at all. I don't know what it is about having Isaac hold my hand in the water. I just felt safe, like I knew nothing would happen to me while he was with me. I am no born swimmer and the ocean was never my comfort zone. But the moment he held my hand I felt like I belonged there. I did not worry about where I was drifting in the water, whether I was too far out or too close to the rocks. As long as I knew he was still holding my hand, I could have stayed out there, floating on the water, enjoying the natural aquarium beneath us for a long, long time...

After almost 9 years, he is still holding my hand...and God willing, for many more years to come...

Let me...

Seeing how Abby laughed and played today made me almost forget the last few days...almost. Mid last week Abby started with runny nose that was most likely allergy related. The most irritating thing about the runny nose is the post-nasal drip cough that results. Abby began to have trouble sleeping at night due to the constant coughing, and though we did all the usuals, like humidifier, elevated her head, cleared her nose as much as possible before bed, and even the forbidden cough meds, but she was only getting worse.

So 3 days had gone by and it was now Sunday evening. Our flight was the next morning at 7:30am and we were still packing. Then we found out Abby had a fever! We called the advice nurse and we were so close to having to bring her to the ER due to fear of pneumonia or other types of infection. She and Ally both have sickness-induced asmathic symptoms, which caused the on-call doctor to advise us to consider postponing the morning flight if Abby's breathing is not under control...

I drove to the 24 hour pharmacy at Kaiser at 9pm by myself and on the way there I could not help but be overwhelmed by my baby's suffering. Every labored cough was like a little stab to my heart. My only prayer at that time was, "Let me suffer instead, Lord. Let me cough, let me have the fever, let me have the allergies or infections or whatever else she has. Let me have the pain, let me have the sleepless nights. Whatever it is that pains her, just let me take her place...please... She is so little... She is so tired from all this... Just let me take her place, please, let me..."

Before I became a mother, I could only imagine what loving your child feels like. What are you willing to do to protect her, to make her well, to keep her from pain, especially physical pain and not the pain that makes her mature or whatever, but physical laboring pain. You will do anything basically! I will do anything. I will take her place in a heartbeat. If only I can put her pain upon myself, I will do it every time. I will die for her if it keeps her alive. I don't have to think about it. It's in my blood now. It's what a mother does...

Note: I am reminded once again that my love for my kids is only a poor reflection of God's love for me. He did take my place. He did die for me. He put my pain upon Himself and suffered instead of me...

p.s. Abby started antibiotics and allergy medicines and is doing great! As some of you might have seen on the video, she had a blast in the warm Hawaiian tide pool! She is in great spirit and I cannot thank God enough for making her well so quickly!

A blog of my FB statuses

Ever since Facebook became the social network site of choice, I have spent very little time on our blog. Apologies to those who follow our updates here. Apologies also to myself because indeed here is where I reflect and record my thoughts for myself. As I read back to some of my posts in the past, I have been encouraged and regained perspective to tread forward in tough times.

So here I am recording my past couple months' significant (or reflective) Facebook statuses so to remind myself of my journey in how God has carried me through it all. I will start with my most recent, February 24, 2010, just about 10 minutes ago.

Note: Having gone through the exercise of reading through past FB statuses to post here, I am left with an immense sense of praise. There is nothing good in me except my Lord Jesus. There is nothing good in my life that He has not given me. There is nothing I want more than to live this life for Him. There is no other worthy purpose for these fleeting years of mine...

2/24/10
Grace Tong There must be more than this...

2/23/10
Grace Tong had a good day being alone...
Grace Tong is scheduling regular alone time for herself...time to dream, to reflect, to rest, and to work!

2/22/10
Grace Tong just wants to worship...finding another worthy purpose is an effort in vain...
Grace Tong is a bit down today for various reasons...praying for God's wisdom and comfort...

2/21/10
Grace Tong learned a lot today...praying to put into practice...

2/18/10
Grace Tong can only live her life...and not someone else's...

2/8/10
Grace Tong is thankful that so often she can simply look up at the vast sky, beautiful or not in human standards, and be completely overwhelmed by her belief that a wonderful God, beautiful in all His ways, has not only created the world, but also her, and is still intimately involved in her little details, daily bearing her burdens, pouring down His mercies and His grace...
Grace Tong needs some soul nourishment...sometimes feels like a sponge squeezed dry...

2/6/10
Grace Tong can't believe she'll soon be mom to a 4- and a 2-year old...however difficult things can be sometimes, time still seems to fly with sweet memories to recount...Lord, help me love these girls you have entrusted to me and bring them up in Your ways...

2/2/10
Grace Tong wants to learn to look beyond herself and even her family...it's so easy for her to only look inward...

2/1/10
Grace Tong realizes more and more how being organized is also being good stewards of what we have...too often we go and buy something we thought we need only to find it stashed somewhere at home we did not realize...

1/28/10
Grace Tong is thankful to have her parents close by to help in her time of fatigue...
Grace Tong wonders how anyone manages to be patient with toddlers...they're unreasonable at best and unsensible often...being a mother makes me think about what it means that God is patient with me...
Grace Tong still has a sense of unbelief that Auntie Irene is gone...indeed she is resting in peace now...

1/27/10
Grace Tong "Death is not a natural thing. We were not meant to die but to live forever." - Leslie, BSF teaching leader

1/22/10
Grace Tong had an overwhelming day with the kids at home, with house mess, jet lag, rainy day stuck indoor, and more. Ally came to me at night with all smile and said "I love you, mommy. You're the best!" While she gave me a kiss, I felt so unworthy of her affection because I was nothing less than impatient and irritable today.... Thank God and my sweet kids for their grace and forgiveness...praying to do better tomorrow...

12/31/09
Grace Tong is already living in 2010 in her time zone...what a memorable 2009 it was, full of challenges and changes...wanting to make the most of each day as there is new mercy every morning...

12/29/09
Grace Tong has been weary dealing with Abby's tantrums (yes, she throws tantrums, for all those who find her so "cute and innocent") and appreciates her hubby's encouragement in learning to celebrate her being good, discipline her when needed, and love her no matter what...

12/17/09
Grace Tong went nuts earlier because of another snag in the project, then I drove past the house near ours that was burned a couple months ago, where the elderly husband died in the fire, leaving his wife and grown daughter...seeing that house leveled to the ground gave me the much needed perspective of what is truly important in life and what is really not...

12/11/09
Grace Tong is one grateful woman...

12/9/09
Grace Tong was near exasperation this morning when she found out that the heater stopped working...not ANOTHER thing that goes wrong, please?...I thank God that He is daily putting me in a position of reliance of Him, teaching me to look to the eternal and not hang my life on what is temporal, that which breaks, fails, and disappoints...and YES, thank God for miraculously making the heater work again when I came home from BSF!!

12/2/09
Grace Tong
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Grace Tong had a dream about being in a CEF reunion, where lots of CEFers crowded into the DC3 sanctuary, doing what we used to do every week, having a blast praising God and living life together...I miss you all!!! ♥

11/29/09
Grace Tong had a wonderful prayer time with Ally and hubby last night, thanking God for every detail of this horrible week... (to be continued in a Note...)

11/26/09
Grace Tong is used to relying on herself and the hardest thing about being sick is having to rely on other people...
Grace Tong needs to learn what it means to "give thanks in all circumstances"...not an easy thing when moping around home alone sick while babies and hubby hang out at grandma's on Thanksgiving...must make a conscious choice to be thankful in whatever circumstances...

11/18/09
Grace Tong is reminded in that He gives a peace that surpasses all understanding, like "being in the eye of a tornado, where there is complete calmness even with disasters going on all around us".

11/11/09
Grace Tong wants to learn to "catch them being good".

11/9/09
Grace Tong "Love is unconditional, trust is earned...respect is given." - Greg Speck and Lynelle Zandstra

11/5/09
Grace Tong is reminded that we reap what we sow...sow wisely...
Grace Tong finds that energy and patience levels go hand in hand...and right now, she has no energy...

10/31/09
Grace Tong only wants that her girls grow up with tender hearts, towards God and towards people...that's my parental ambition for my precious ones...

The story of our kitchen redo...

About 4 weeks ago we came home to a bulge on the kitchen floor. We knew it probably had something to do with water and sure enough there was water damage under the vinyl due to a slow leak from the sink. To examine the extent of the damage, a family friend contractor helped us rip out half the kitchen floor. We were thankful that the structure of the sub-floor seemed intact and we allowed the plywood to dry for a few days while deciding what to do next.

After many talks of floor replacement possibilities and our "dream" of having a new kitchen, we actually researched on new cabinetry and worked on the "numbers". To our pleasant surprise, it was starting to look possible for us to replace the whole kitchen!

Our kitchen is original to the house but thankfully with new appliances when we purchased it. Some of the drawers were starting to fall off their tracks and the sink, with its leaks and damage, would have to be replaced. After lots of talking, praying, dreaming, and working on the budget, we finally decided to go for it! The picture above shows the mess we had while we packed up the kitchen in the past couple days to prepare for the demolition that is going on right now as I type!

While our kitchen redo is a major event in our family's life, I feel it is especially a major event in our family's faith life. As some may know, I (Grace) resigned at the end of July and began to stay home with our kids. It was a faith lesson then to trust God's provision for us. When we saw the bulge on the floor several weeks ago, we wondered what God had planned for us.

The interesting thing is that after staying home for a month or two, I have gotten quite content with our lower budget lifestyle. It's actually quite freeing to not need to buy new stuff and fill our lives with clutter. However, a little part of me felt a tiny sense of loss sometimes when I thought about the impossibility of remodeling our kitchen. The thing is, I love to cook and it would be a dream to redo my kitchen so it's bright and functional. But living on one income is certainly not the time to think about that, right?

In these past couple weeks of researching, praying, and seeing God come through for us, I am in awe with praise. How? I want to ask. How can we do it? Of all the things I thought I might miss because we no longer have double income in the home, God chose to say, "You know what, with man it might be impossible, but with me, all things are possible." He is bringing to reality the one thing that I thought would be impossible!

God came through also with perfect timing. I joked two weeks ago with Isaac that if I were still working while we discovered the kitchen damage, I would go nuts and the whole family would have suffered! :) Because I was focused on the home, I had capacity to handle the unforeseen situation. I also had the time, energy, and interest to look into repair or replacement options, which would be impossible if I had to also focus on work (this week would have been the start of my year-end audit).

Lord God, You are good. I cannot thank You enough. I feel so undeserving. But You are still good to me. I don't know how we were able to do this. But somehow You came through in all the big and small details, which all tell me that You have us safely and securely in Your hands. There is nothing that we need to fear because You are with us always. Thank you, Lord. Thank you for who You are to us. Thank You for all that You have done, are doing, and will do in our lives. May we always look to You as our Jehovah Jireh, our strength, our joy, our All in All. We love you!!