December 5. Yesterday, a friend posted a link to a blog that I cannot stop thinking about. Part of it tells a story I cannot fathom, and part of it tells a story that is a little too familiar. A young woman, Sarah, who overcame infertility through In-Vitro Fertilization, lost her husband to cancer. She then made the incredibly difficult decision to go ahead with another IVF with the remaining frozen embryos, despite knowing that she would already be raising their son as a single mom. She was blessed to give birth a few weeks ago to a baby girl named Ellis. But two weeks later, Ellis contracted bacterial meningitis and is now fighting for her life in a hospital. Please pray for Ellis in the days ahead. You can read about her here: http://journeyofsarah.com/uncategorized/pray-for-ellis/

I have drafted several letters to this mother in my head ever since I read her story, but the words just fall like snow on a warm sidewalk and disappear. Part of me has nothing to say to her because I cannot comprehend losing my husband to cancer, making that bold choice for life, and then finding myself back on my knees begging for the life of my tiny, new daughter.

Another part of me has lots to say to her because I know what it feels like to make a bold decision for the life of a child and have it spiral out of control—at least out of my control—into what feels like a nightmare. That part of me wants to cry out to her and say, “Just grab onto the Lord and hold on as tight as you can. No matter the outcome, He WILL carry you through. And there will be beauty on the other side, even if you ends up in a completely different place from where you started.”

I also want to tell her that no matter what doctors or MRI’s say, her daughter’s life is just as precious and beautiful and valuable as it was before she got sick. That I, too, became a mom to a little boy and a few weeks later was pleading for his life. That he never spoke or walked, and that his life was too short, but that it was heroic and full of meaning. And that I am also a mom to a little girl whose brain suffered terrible trauma but that she lived and is beautiful and strong and thriving in her own ways. That both lives have produced far more love than pain. But these are things no one can tell you. You can only believe them when you experience them for yourself.

I remember when the tornado hit our property during the summer of 2012, just days after Timothy almost died in our home and was rushed to the hospital and put back on the ventilator. A dear friend came over the next day, and we walked around our yard, surveying the devastation. I have never forgotten her putting her arm around me and saying, “I don’t know, Melissa, but this just feels like too much.” She is a supportive friend with a rock-solid faith, but I knew exactly what she meant. That is the same feeling I had when I read about Ellis yesterday. It feels like too much.

But it wasn’t. It never is. It never has been. It never will be. Because trusting God means trusting Him—No Matter What. And whatever the outcome, He is good (Psalm 34:8), and He is love (1 John 4:16b), and He is unchanging (James 1:17), and He never leaves or forsakes us (Joshua 1;5). He can redeem even the darkest, most hopeless situation and bring good out of it (Romans 8:28). And I am so grateful for the desperate times in my life that drove me to know this for myself.

Lord, as much as I would like to relieve this young mother’s pain with words of reassurance, I know—because You have taught me—that pain is not to be feared or avoided. I boldly join the prayers being offered up for Ellis, but to them, I add a prayer for her mom that she will cling firmly to You as THE source of her strength and that she will trust You to carry her through whatever the future brings.  I pray that You reveal yourself to her in undeniable ways and that Your peace and comfort would guide her every step.  In Jesus’s Mighty Name, I pray. Amen.

“Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.” (Psalm 143:8)

December 4. And then there are the days when your twin babies didn’t sleep well, and little tornadoes seem to have struck every part of your house, and you go in circles trying to get one of your kiddos with special challenges some support she needs but you get nowhere. And at the end of the day, all you have to show for it is a headache that won’t go away, a cup full of coffee that you never drank, and a sinking feeling that even on your best day, you only marginally meet the needs of your kids. BUT, you committed to posting a journal entry everyday of Advent, and you don’t do fake, so you sit down with your paper journal and your Bible and ask God to show you what any of this has to do with a holy night and a manger and harking heralds, whatever they are anyway. And He says it has everything to do with them.

Because without the holy night and the manger and the harking heralds, this would be how our entire lives end. We would strive and never be good enough, work tirelessly and attain nothing but death, and have more than a headache with no healing in sight. But that isn’t how it ends. Because He did come, and He lived the perfect life we are completely incapable of living. And He made the perfect sacrifice we are incapable of making. And now the hard days and hard years and even the hard lives end well for those who accept His gift. I could be brutally murdered tomorrow, and my life would still end in victory because He made it so.

Maybe that sounds gruesome and gloomy and makes some people cringe, but it is true! And that is why Christmas and Easter should be glorious celebrations! Because the birth of the God-baby and the death and resurrection of the God-man rewrote the end of the story forever!

Days like this make me think of how the Israelites must have felt making sacrifice after sacrifice. All that blood and killing and burning, but it was never enough. And all the striving to keep the law and failing over and over again. But “we have one who speaks to the Father in our defense—Jesus Christ, the Righteous One. He is the atoning sacrifice for our sins, and not only for ours but also for the sins of the whole world.”(1 John 2:2, NIV)

They also make me ache for those who are chained to works-based false religions or the “religion” of our culture that tells them their worth is determined by what they produce or obtain in their lifetime. All that striving and acquiring only to come up empty in the end. Jesus himself said, “Do not store up treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.” (Matthew 6:19-21, NIV)

And even some believers buy the lie that their worth is tied to their own righteousness instead of His. But no matter how early we get up for quiet time, how many hours we serve the poor, or how perfect our church attendance is, “[a]ll of us have become like one who is unclean, and all our righteous acts are like filthy rags; we all shrivel up like a leaf, and like the wind our sins sweep us away.” (Isaiah 64:6) Notice the word ALL in that verse—it’s there three times. I’m pretty sure that means He’s talking about all of us.

But the baby in the manger did what we can never do. “We have been made holy through the sacrifice of the body of Jesus Christ once for all.” (Hebrews 10:10, NIV) And it isn’t only an eternal gift, but an every day gift. Even a didn’t-accomplish-anything, met-nobody’s-needs, big-old-headache kind of day. Because eternity is NOW for a believer. It doesn’t start when we die; it starts when we accept His Christmas gift. That’s why, first thing this morning when I woke up tired, Jesus said to me: “Come to me…you who are weary and burdened, and I will give you rest.” (Matthew 11:28, NIV)

Thank You, God, that even on a not-so-great day, I am good enough because You made it so through Your Son’s perfect sacrifice. Thank You that tomorrow is another day. And thank You for Advent, where I can sit at Your feet and soak in the truth of Your word. In that God-baby’s name, I pray. Amen.

“This then is how God showed his love among us: He sent his one and only son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.” (1 John 4:9-10)

December 3. What if I said that this picture is an artist’s rendition of a Christmas tree? Some people may question my definition of artist; others may consider it abstract art worthy of consideration; and a few may think this artist needs to wean herself from controlled substances and find a new art instructor.

What if I then revealed that the artist was a 6-year-old girl with Down syndrome who had never drawn a Christmas tree before? Most would celebrate her accomplishment, admire the recognizable shape of the tree, or perhaps wonder why the tree seems to be barricaded at the bottom (see December 1 post).

What if I then shared that this artist drew her creation in black crayon on the family room wall? Some may laugh hysterically; others would empathize with her mom; and a few may wonder to themselves, “Who was watching this child?”

One picture. Three very distinct perspectives. All containing elements of truth but none complete in isolation.

When Lydia created this masterpiece on our wall yesterday, I began thinking of all the ways I could view the situation—frustration at the sibling who gave her the crayon, dread over the effort it will take to clean it, pride for her developing skill, and guilt over my neglect all came to mind.

This morning, however, God showed me how He could use this experience to teach me another Advent lesson (Yes, He truly can work all things together for good!). He brought to mind the earliest events of the Christmas story. In Luke, Chapter 1, an angel appears to Mary and says these words: “Do not be afraid, Mary, for you have found favor with God. And behold, you will conceive in your womb and bear a son, and you shall call his name Jesus. He will be great and will be called the Son of the Most High. And the Lord God will give to him the throne of his father David, and he will reign over the house of Jacob forever, and of his kingdom there will be no end.” (Luke 1:30-33, ESV)

World changing words. Eternity changing words. And for young, teenage Mary, life-changing words. Her reaction? How can this be? I am engaged to be married, but I have never been with a man? (see verses 27 and 34)

And her fiancée Joseph’s? What in the world? This virgin I am supposed to marry is pregnant? This will disgrace her. I must call it off! (see Matthew 1:18-19)

While the Bible does not specifically tell us, any parent can imagine Mary’s parents’ responses—disbelief, sadness, embarrassment, possibly anger.

But when God gave Mary and Joseph His perspective on their situations, everything changed.

The angel Gabriel told Mary: “The Holy Spirit will come upon you, and the power of the Most High will overshadow you; therefore the child to be born will be called holy—the Son of God. And behold, your relative Elizabeth in her old age has also conceived a son, and this is the sixth month with her who was called barren. For nothing will be impossible with God.” (Luke 1:35-37)

And Mary replied: “Behold, I am the servant of the Lord; let it be to me according to your word.” (Luke 1:38)

An angel also appeared to Joseph in a dream and told him: “Joseph, son of David, do not fear to take Mary as your wife, for that which is conceived in her is from the Holy Spirit. She will bear a son, and you shall call his name Jesus, for he will save his people from their sins.” (Matthew 1:20b-21)

Verses 22-23 tell us that “[w]hen Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife, but knew her not until she had given birth to a son. And he called his name Jesus.”

Without God’s perspective, our vision is always distorted just as Mary and Joseph’s were at first. But how do we receive His perspective when angels do not appear to clarify for us? The Triune God has provided three types of “corrective lenses” for our faulty vision. We can hold the situations in our lives and in our culture up to God’s Holy Word. We can discern through the conviction of the Holy Spirit that lives within us. And because Christ gave us access to a righteous Father, we can speak directly to Him in prayer. I never see in full when I look with my own eyes, but I can trust that God always sees a complete picture—even if it is drawn in black crayon on a family room wall.

Lord, Thank You that I, a sinful human, can see with Your eyes. Please teach me to always use the truth of Your Word, the conviction of the Holy Spirit, and my direct access to You through prayer as corrective lenses for my faulty vision. Let me always pursue Your perspective on situations I encounter whether in my own life or in the news. Let me trust You even when my limited humanity prevents me from seeing a complete picture. In Your Son’s name I pray, Amen.

“Your word is a lamp to my feet and a light for my path.” (Psalm 119:105, ESV)

“But, as it is written, ‘What no eye has seen, nor ear heard, nor the heart of man imagined,
what God has prepared for those who love him’—these things God has revealed to us through the Spirit. For the Spirit searches everything, even the depths of God. “ (1 Corinthians 2:9-10, ESV)

“Call to me and I will answer you and tell you great and unsearchable things you do not know.” (Jeremiah 33:4, ESV)

December 2. My prayer has been that this year, unlike years past, Advent would be a time of preparation, not for the external celebration of Christmas but for the internal preparation I need to understand the Incarnation on a deeper, more personal level. Interestingly, as I begin to seek God in these early days of Advent, asking Him to show me more fully what I am preparing for, His response has been that I am asking the wrong question. Before I can even begin to understand the Who or What of His gift, I must first ask Why?

I don’t mean why do I need a Savior. That’s a Gospel story for sure and the most important question a person will wrestle with in coming to faith and salvation. But as a believer with a saving faith, why do I need to understand the significance of baby Jesus afresh each year? Why not just celebrate Christmas with gifts and decorations and music and maybe a Christmas service or two—sort of like a memorial or a remembrance?

My answer came in a children’s devotional reading. This does not surprise me one bit; it seems lately that I discover much truth in my kids’ homeschool curricula, and I love that! Today, one of the devotionals I shared with Lydia and Saylor included the familiar Isaiah passage of scripture that stirs hearts at Christmas no matter how many times it is recited or read: “For unto us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and of peace there will be no end,
on the throne of David and over his kingdom, to establish it and to uphold it
with justice and with righteousness from this time forth and forevermore. The zeal of the Lord of hosts will do this.” (Isaiah 9:6-7).

But this devotional didn’t start at verse 6 like most of the Christmas recitations. It started with verse 2, which I had not previously even noticed more than in passing. It says: “The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them light has shined.” God really impressed upon me that I needed to meditate on this verse in light of my Why question—that it would show me why this God-child needed to be born, and why Advent is about more than celebrating the salvation that comes through Him. I am no theologian, but time and time again, God has used His Word to reveal His truths to me.

The result of my prayer and meditation on Isaiah 9:2:

 I am one who walks in darkness when I…

*see only through my dim eyes instead of His clear ones

*seek guidance from my fellow sinful man before God

*read more faithfully others’ words about Him than His own Word

*am influenced more by my culture than my God

*let my eyes see impure things without turning away

*fail to see need around me

*have tunnel-vision, focusing on my own agenda instead of His

And I dwell in a land of deep darkness, a land plagued with…

*bad habits

*wasted time

*not enough joy

*sparse fruit of the Spirit

*a sense of urgency dictated not by God but by society’ expectations of me

*spiritual ADD, anemia, and malnourishment

*constant distractions

*technology and advancements that have created a land of abundance that is so full, it is empty

Dear God, I think I understand Why I need to encounter you afresh this Advent—and all the time, really. Even though I am a believer who has eternal life through you, I walk daily in darkness and I dwell in a land of deep darkness. Shine your light on these convictions you have revealed to me, and dispel the darkness that blinds me today and everyday. Help me, this Advent season, to “see a great light.” In Your holy name I pray, Amen.

“Again Jesus spoke to them, saying, ’I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.’” (John 8:12)

In early November, I challenged myself to tackle some of my most stressful and time-consuming Christmas tasks by Thanksgiving in a desperate attempt to savor and fully experience Advent both personally and with my kids. The past several years, I have stressed my way through the holidays that I once loved dearly, and I really want this year to be different. I want to actually finish the Advent devotionals that I start and to bake and make crafts with Saylor and to help Lydia understand the Christmas story for the first time. I want to hear from God this Advent and reflect daily on what Christmas really means, so that when the 25^th comes, I will fully appreciate what I am celebrating. As part of my challenge, I hope to journal through Advent in an attempt to keep myself accountable, capture what God reveals, and use this blog that I never find time to write in! Even if no one else reads these journals, I will appreciate the outlet for reflection, as writing always helps me process life a little more fully.

December 1. Advent is here. The devotionals and other activities I have carefully been selecting for weeks start today. Yet when I woke up, the excitement I expected felt tainted by apprehension. Why? I have mostly succeeded in my mission to ease the stress of Christmas preparations. Lots of gifts are safely tucked away in their hiding places. Most of my cards have been delivered or at least mailed. The tree is decorated and fortified with an extra large baby gate in hopes of keeping the ornaments ON it. Yet, I found myself procrastinating the start of the festivities this morning—after breakfast, after coffee, after the baby’s nap—until I finally just dove in. Everything went just fine, so what was my problem?

I think God is trying to show me something about myself. My sometimes perfectionist self may need to get out of the way if I want Christmas to be what it is truly about. Take His first point for illustration—Christmas cards. Yes, I mailed them last Wednesday. And on Saturday I found, not one, but THREE typos in our family letter that goes to friends we don’t see often. Now, this may seem insignificant to most people, but it was a serious blow to my former-English-teacher pride. How could I have mailed over a hundred copies of something written, typed, and edited by me that contained not one but TWO missing commas and a missing word! A whole word!?! Now, granted it was a small word (“a”), but still. I thought of sending an addendum, printing a retraction, claiming that my letter was stolen by aliens or small children and mailed without my knowledge. But alas, I just twitched a few times and convinced myself to get over it. Because I realized that I would much rather have my imperfect letter mailed and delivered than to still have that task hanging over my head. Sometimes the little, truly insignificant details can be sacrificed for the ultimate goal.

Christmas is ripe with opportunities to get distracted by the details and paralyzed by perfection. We spend so much time searching for the perfect gift, designing an eye-catching card, scouring recipes for the one that will be the talk of the cookie swap, or shopping for the outfit that will make our little angel stand out among the swarms of children in the Christmas Eve choir. Okay, so I have never been to a cookie swap, and my angel was always the one pulling her dress up over her head, but the point is that my first lesson this Advent season is that sometimes God wants me to sacrifice perfection in preparation for completion. My work can truly be neverending, or I can stop and say it is good enough, and now I will spend time with my family or quiet myself before God and really listen to Him. In our culture today, this is especially difficult. The Internet taunts us with an endless supply of ideas, recipes, and gift options. We could truly never stop seeking, planning, and preparing for the perfect Christmas. But if we do that, we will surely fall short because most of what creates a truly meaningful Christmas comes not from physical preparations but from heart preparations, and those cannot be found on Amazon or Pinterest, or Allrecipes.com but in time in God’s Word and in prayer and through savoring the season with family and friends.

Lord, limit me to enough preparations to give my family a special, memorable time this Christmas, but let me be okay with imperfections, so I can enjoy this Advent season with my family and sit in Your Presence and learn from You. In Your name I pray, Amen.

“Now as they went on their way, Jesus entered a village. And a woman named Martha welcomed him into her house. And she had a sister called Mary, who sat at the Lord’s feet and listened to his teaching. But Martha was distracted with much serving. And she went up to him and said, “Lord, do you not care that my sister has left me to serve alone? Tell her then to help me.” But the Lord answered her, “Martha, Martha, you are anxious and troubled about many things, but one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.” (Luke 10:38-42, ESV)

(Saturday night)                                   (Monday morning)

In less than three weeks, my oldest son will turn thirteen. I am bracing myself. I am bracing myself because I know what’s coming.

No, it isn’t acne or hormones or rebellion or disrespect or delinquent behavior that I fear. I fear the message that my son is about to start hearing from the world. The message that he is supposed to become ruled by his hormones, that he is destined to rebel, that he is expected to hate his parents, and that he is nothing but trouble. Lies. All of them. But dangerous lies if he accepts them as truth or prophecy or unavoidable realities.

I’ll never forget my oldest daughter’s sixteenth birthday. Sure, it was an exciting day, celebrating this special milestone with one of my kids for the first time. But sadly, one of my clearest memories is of an exchange I had with a Farm Fresh floral department worker. I wanted to buy my daughter balloons to take to her co-op as a surprise. I carefully chose the Sweet Sixteen balloon I thought she would like best and was in the process of selecting some matching balloons to go with it when the worker asked me, “Is it as bad as they say?”

“What?” I replied, thinking I had missed yet another world event or weather forecast as I was notoriously ignorant of current events at the time—a phenomenon that has improved slightly, thanks to Facebook.

“Having a teenager. Is it as bad as they say?” she replied apprehensively.

Stunned, I collected myself for a minute then seized the opportunity before me. “It’s wonderful,” I told her. “My daughter is amazing, and I enjoy her tremendously.”

“I don’t have teenagers yet,” she told me. “But I have heard some horror stories.”

“It doesn’t have to be that way,” I told her. “Really. It doesn’t.”

I don’t think she believed me.

A few more years have passed. I have two teenager daughters now, and my feelings have changed. I am even more certain that I love having teenage children, and I am even more convinced that they are being fed a pack of lies and pitifully low expectations by society. Teens today are bombarded by attacks. We hear it from the media, in the entertainment industry, in jokes, in complaints from parents, and even from Farm Fresh florists. Parents hear that the teenage years are to be feared, survived, and endured. And teens hear that they are unpleasant, unproductive, and fraught with trouble.

I cringe whenever I hear these things in front of one of my teenage daughters, and I dread it for my son. Every year, I enjoy my teenage daughters more. Every year, I see more of their giftings and glimpse more of their heart. Every year, our conversations deepen, and our friendships grow. Sure, I am still the parent, and they are still the children. We irritate each other and engage in power struggles. We make mistakes and need forgiveness. We have our grumpy, moody days when nothing goes right. But this has far more to do with us being sinful people living in close proximity to each other than either of our ages. Sometimes, my teens are far more mature than me. And sometimes their younger siblings are the wise ones.

It isn’t just my kids either. I love and admire lots of teenagers in my life. There’s Noah who gives loving attention to our babies every time he sees them. There’s Hannah who smiles freely and talks openly when I give her rides. There’s Joe who knows when I am overwhelmed by a belligerent five-year-old and whisks her away to give her mom a break. There’s Tori who finds the bright side of everything. And Michelle who gets up early and gives up hours of her day, not once but twice, to sit with a friend recovering from surgery. There are the teens that awe me at speech and debate tournaments and others who humble me with their work ethic on the pool deck in the wee hours of the morning.

My kids have been blessed by amazing teenage role models who have now entered their twenties and are living productive lives, bearing fruit from their choices. The only true role model is Christ, and I know better than to put anyone on a pedestal, but it has been great for my kids to see the young teenage girls who taught their first piano lessons go on to become a Naval officer and a music studio entrepreneur. They have attended a summer music camp run by teenage girls (now young women) in our area, first in their home then in a local church as their efforts were rewarded with growth. They have seen teens model healthy relationships and go on to marry and start their own families. They have seen teens serve and study and care and respect and make a true difference in the world.

When my son turns thirteen in a few days, I plan to tell him to practice tuning out the lies, and I hope I can do the same. I plan to tell him that I am excited that he is a teenager and that as Paul David Tripp writes in his wonderful book, this is an Age of Opportunity, not a time of life to be feared or dreaded or endured or survived. I’m going to share stories with him like those chronicled in Do Hard Things by the Harris twins and The Rebelution movement that led to their writing of that book and continues to be active and inspiring today. I’m going to continue pointing out the older teens around him in Scouts, Debate Club, youth group, and on the swim team who are bucking society’s expectations and walking, not perfectly, but intentionally with God. I’m going to walk toward him, not away from him. I’m going to embrace and enjoy this new stage of life, knowing that it is no more frightening than bringing him home from the hospital as an infant or watching him dive in the pool at his first swim meet.

And the next seven years are guaranteed to be full of hard days and great days, struggles and victories, failures and successes, mess-ups and do-overs, and sin and grace. Because that’s just life. At any age.

I find as I get older, my definitions of many things change significantly. For example, “privacy” used to mean that I alone saw, experienced, or read something. Now privacy is limited to the bathroom and even that is only private about 50% of the time. Vacation is another word that has transformed over the years. When I thought “vacation” in my earlier life, images of beach sunsets, early morning walks searching for shells, fun-filled days at Disney, or quietly reading books on a porch swing came to mind. In recent years, vacation meant days of packing, meal planning, debates about which activities to spend money on, and the need of a “vacation from my vacation” once all was said and done. This year, quite unexpectedly, that changed.

Since we thought Marina’s jaw surgery would be in June, we made virtually no summer plans this year. When they couldn’t schedule her until early August, we scrambled for a last minute, almost impulsive vacation. Thanks to a first-hand recommendation from a trusted friend, we took a risk and booked an all-inclusive trip to a family camp we had looked at every year for the past five years but never had the nerve to try. Wow, have we been missing out! Sandy Cove’s Homeschool Week had something for every single one of us. And it was a tired mom’s dream vacation—no meals to prepare, no dishes to clean, no decisions to make, built-in quality childcare, deep spiritual teaching, great worship, one-on-one couple time, beautiful scenery. To put this in perspective, I went the entire week without yelling at anyone, without arguing with my husband, and without taking a single Motrin—not one. No joke!

Without further ado, here are the highlights of our amazing week at Sandy Cove:

Incredible view of the Chesapeake Bay…

Putt-Putt…

Okay, sometimes we missed the hole…

Kneeboarding was the first of many awesome water rides (tubing, wavecutter, pontoon boat ride)…

Great worship, Lydia-style…

The big swing made even the oldest and bravest among us squeal (other thrills were had on the zip line)…

12 and under girls and boys swim race champions (prize: free sundaes at the ice cream shop!)…

Lydia cares for her baby brother…

Bekah and Saylor win more ice cream in the coloring contest…

Final day program…

Tired from a week of fun with the nursery workers (walks, crafts, play and rest time)…

She was right at home…

Sad to leave this awesome place…

But we will be back next year!!!!!

“Come to me, all you who are weary and burdened, and I will give you rest.”  (Matthew 11:28)

Some events in life are so imprinted in your memory that you can relive them in such vivid detail that it feels like watching a movie. May 12-15 will always be like that for me.

Mother’s Day fell on May 12 last year, and it puzzles me why that day is part of my remembrance, but somehow it is. We went to church as usual then out to lunch at Jason’s Deli and to Southern States to pick out seeds and plants for our garden, my Mother’s Day gift. We came home and planted everything even though the ground was too saturated to do it well. It was messy and backbreaking, so when it came time for a visit to CHKD, I willingly allowed Jerry and Jonah to have the honor. I remember that they texted me a picture of Jonah holding TJ while they had a “guy’s afternoon” with the TCU remote. A rather typical Sunday other than being Mother’s Day, yet somewhere deep inside of me, I knew to remember it.

The next night was the night Timothy had a fever and let me snuggle him for so long during my evening visit. It was atypical for him to sit still long enough for that much snuggling, so I cherished the time. He fell asleep with his head nuzzled under my chin. He was wearing green. I noticed that he didn’t respond like usual to his play gym when I left him under it, a ritual we had, but it wasn’t unusual enough to give me pause…one thing I’ll always regret.

The call came early the next morning. When Jerry woke me to say TJ had been rushed to the PICU, I was too groggy to process the words clearly. And so began the two days I have been reliving each hour since I woke earlier than usual this morning. It culminates around 6pm tomorrow. May 15. The best worst day of my life.

I held our sweet boy as he died, something I pray I never do in any shape or form in this life again. And I saw my Jesus up close in a way I had never seen Him before. And that was beautiful. And that is what Timothy sees all day every day now. That is how I have peace with his passing and how I live with him gone. And God has used his life and death in so many ways, including to bring a home to Titus and Tess, who have been part of His healing touch in our family’s lives, another gift and legacy from Timothy to us—because he made us brave and taught us to trust God with things that seem impossible.

I just finished reading a wonderful book by Paul E. Miller called A Praying Life. In it, he writes about a trial he endured during which he thought, “This was a mistake. I will never do this again.” Miller goes on to say, “What I didn’t realize was that the kingdom had come. It is always that way with the kingdom. It is so strange, so low; it is seldom recognized. It looks like a mistake. Later…I realized that I was in the middle of one of God’s stories…The Father was taking me on the same downward journey he took his Son…The downward journey is a gospel story.” (A Praying Life p. 212-213)

I think Timothy’s story is a gospel story. By outward appearances, it looked like one failure after another…in so many ways I cannot list them all. In the midst of it, there were many times that it felt like a mistake had been made. There was a lot of crying out to God—sometimes Why and sometimes How? Then it ended, and that seemed even more of a mistake. How could that be? He had finally turned the corner. He was weeks away from coming home, but instead he went Home.

But it wasn’t a mistake. It was the kingdom coming. The vessel was the life and death of an adorable little Filipino boy with Down syndrome and a lot of extra challenges who made everyone who knew him smile. I wish I could hold him again and rub his soft black hair and kiss his fat little cheeks and watch him pull his little toes up to his ears. His life may have been short, but it was no mistake. It was a gospel story. And even though it hurts to remember these particular days, and it aches like crazy to think about him, I am so grateful God gave me a tiny role in it.

God bless you, Timothy José.

I have been writing an update in my head for weeks now. I thought it was going to be full of medical and developmental news about the babies and maybe a few other family updates. That was my plan. Until yesterday.

Now I am compelled to tell you about the musical my family experienced yesterday. We attended Les Miserables for the third time. The first two were Broadway tours, and they were good. Very good. We all fell in love with the story and the music and have been Les Mis junkies for years. But this time was different. This time we fell in love with the actors (and actresses). And the combination…music, story, acting…defied words.

No, the show was not on Broadway, and the tickets did not cost a hundred bucks a pop. But I guarantee that nobody who attended any of the expensive shows on Broadway yesterday was more moved than those of us who sat mesmerized for three hours in the theater at the Kempsville Rec Center in Virginia Beach watching Les Miserables the School Edition with All Abilities.

My friend Dianna Swenson and some very special young men birthed the idea of this show, which partnered young actors and actresses with various disabilities with “shadows,” local actors and actresses who put their own talents in the background to allow these young people to shine. And shine they did. In every way. Young adults set aside labels like Down syndrome and cerebral palsy and became Valjean, Javert, Eponine, Enjolras, and the Thernardiers. They delivered their lines, sang their songs, and brought the house down.

For me, the tears began in Scene 1 and flowed freely throughout the show. Holding Lydia on my lap only intensified the emotions of the day, especially when she began singing along with “Empty Tables, Empty Chairs” and blurted out “Cosette” when Marius sang, “I don’t even know your name.” Wow.

And I knew my friend Dianna was fighting back her own tears on stage with her son Collin, who played the Bishop. Without Collin, the entire production would never have happened. Collin suffered a birth injury that left him unable to do anything that society considers essential to a “productive” life…things like eating by mouth, walking, talking, and even swallowing. But on that stage yesterday, Collin showed the world what his friends already know. His life is as productive and meaningful as anyone’s and more so than many. This ten-year-old boy who wasn’t expected to live through the night is a walking miracle whose life has been like the tiny stone thrown into a calm lake. The ripples go on and on until they touch the entire surface.

And his mom. His mom is like any mom. She loves her children fiercely, struggles sometimes, and lives a life many would consider impossibly hard. But she is not like most in her response. She doesn’t survive her challenges; she embraces them, finds joy in them, and turns them inside out. This idea for Les Mis with All Abilities grew into the quality production we witnessed yesterday because Dianna chose to trust God with every detail and every step of the journey. I know because I witnessed it for the past year as this event unfolded. The results were epic because she relied on an epic God, and He provided.

So how does this relate to baby updates? In several ways. Since my last post, Tess has had the Visual Evoked Potential (VEP) test as well as a surgery to align her eyes. The bottom line is that we still don’t know what she sees. Maybe a lot, maybe a little, maybe nothing. Time will tell. Meanwhile, she is receiving vision therapy, and we are reading about CVI (Cortical Visual Impairment), preparing for the possibility of blindness, and holding out hope that her vision is just delayed. Whatever her journey turns out to be, God will provide what she needs, and good will come from it.

And our “bonus baby,” Titus, continues to meet milestone after milestone, with no obvious effects of his brain bleed, but we got the news last month that he had not escaped the need for a cerebral shunt as we had thought. I had been calling that “our little miracle,” and my first reaction was to be mad or to blame myself for not being grateful or prayerful enough to “maintain the miracle.”

But at yesterday’s show, I was reminded that the miracle is life in whatever form that comes. Shunt or no shunt. Sight or no sight. It really doesn’t matter. Because God can use all of it. All of us. Every. Single. One. To make a difference. To touch lives. To reveal Him. To glorify Him. And ultimately, that is what matters most.

So pray for our boy this coming Friday when he gets his shunt. We hope the surgery goes smoothly, the shunt functions well, the hospital stay is short, and the impact on his life is minimal. But mostly we pray that God uses it for good in Titus’s life somehow. And that just like the cast of Les Mis yesterday, he and Tess and Lydia, and all of the rest of us too, will not let our disabilities stop us from using our talents, pursuing our dreams, and SHINING like STARS.

It is hard to believe I have not written even just an update in almost four months.  There have been so many things I have wanted to write…words to share that God has revealed or just funny stories to tell, but I would never write because I felt so guilty for not sending just a basic update on the babies.  There’s nothing more motivating, however, than a need for prayer, so I will write that update now.  Hopefully, this will free me to write regularly going forward, which was my desire when I started this blog last summer.

Titus is thriving in all areas.  He is doing well with his “catch up growth” and has crossed the 18 lb mark…quite an accomplishment considering he was only 3 lbs at birth.  He smiles, laughs, “jumps,” plays with toys, rolls all around the floor, demands attention and bottles, and does everything a baby his (adjusted) age should do.  His last ultrasound did show an increase in his ventricles, which concerned his neurosurgeon, but because Titus is not symptomatic, he has been given some time to prove whether anything needs to be done about this (a shunt).  We have felt the fact that he has not been shunted is his own miracle and are not about to let go of that, so we are praying that his repeat scan in a few weeks will show a decrease in his ventricle size.

Tess has settled down so much.  The fussy, crying baby who had so much trouble feeding when she came home in September is now a sweet, mostly content little girl who often drinks her bottle faster than her brother who is too distracted to eat!  She is up to 15 lbs, more than double her weight when we met her in August.  She struggles with very itchy eczema, the cause of which we have yet to identify.  She has made some small developmental gains such as learning to put her pacifier in and grabbing her foot, but she remains very delayed in most areas.

We have anxiously awaited her follow-up opthalmology appointment, which she had today.  We had taken her in December with great concern about whether she could see at all.  The doctor thought she had DVM (Delayed Visual Maturation), which he expected to resolve within three months.  Unfortunately, at her follow-up today, all indications are that Tess is still not seeing anything.  We had thought that we were seeing some improvement in her vision and tracking, but apparently, we were mistaken.  Perhaps she has just gotten more responsive to sound.  Her ROP (Retinopathy of Prematurity) is not the cause of this; it is likely neurological, due to her brain bleed.  The eyes themselves appear to function just fine, but there is a disconnect between them and her brain.  The question now is whether it is permanent.

The next step is to perform a test called a VEP (Visually Evoked Potential).  It is a 2-hour test that will take place next Thursday afternoon (February 20).  The test will measure her potential for vision and allow the doctor to predict whether Tess will ever see.  Best case, it will show lots of potential, which would indicate her vision is still just delayed.  Worst case, it will show no potential, which if replicated in future tests, would indicate permanent blindness.

We knew this was a possible outcome of her brain bleed, but of course, we greatly desire for Tess to see.  We seek fervent prayer on her behalf, especially over the next week as we wait for the test, but long-term as well, as her vision (hopefully) develops.  We know that God is more than able to intervene in this situation, regardless of what next week’s test indicates.  We also know He works ALL things together for good.  Whichever path will glorify Him in Tess’s life is the path we will willingly walk.  For now, however, we ask you to join us in seeking God for a miracle for Tess’s vision.  Our God has shown repeatedly that He loves to make the blind see.  He is able.

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”  (Ephesians 3:20-21)