Giving Thanks

Photo Credit: Ashley Kenner Photography

Recently, we celebrated Thanksgiving and our son's birthday, both of which have me reflecting much on gratefulness. Ironically, I also stumbled upon my eucharisteo journal from earlier this year.

For those of you that are unfamiliar with the word eucharisteo (pronounced yoo-khar-is-teh'-o); it is a greek word meaning thanksgiving; to be thankful. It is made up of the following greek words: charis = grace and chara = joy.

I first learned of the concept of a eucharisteo journal from Ann Voscamp's book, 1000 Gifts, in which she lists everyday things for which she is grateful. At first, I thought the idea a bit foreign because not only does she give appreciation for the big things in her life, such as friends and family, but the minuscule things as well, such as soap bubbles in the kitchen sink. I am going to be completely honest, this was a difficult book for me to read at the time. I didn't have children and, at my stage of life, I didn't find bubbles in the kitchen sink all that exciting. But now, my perspective has changed. Now.... bubbles, mean that amidst the temper tantrums, sharing wars, constant cleaning, imaginative play, endless story time, running errands, and trying not to lose my mind, I actually had the time clean the pile of dirty dishes in the kitchen sink! Hallelujah for soap bubbles!!!

Eucharisteo Journal a few weeks before we received Dillon's diagnosis

My journal entries have also changed significantly since having children. I try to remember to slow down and enjoy them at each stage, soak up their sweet personalities and treasure the unconditional love they seem to give me just because I am their "Mommy." I am not perfect, far from it in fact, and often find myself swept away with what needs to be done and missing those precious moments I can never get back. However, this journal, and mindfulness in general, helps me to be intentional with gratefulness and find joy in the little things…like fingerprints on windows and soap bubbles.

As I read through my journal, my eyes lingered on the last two lines....

11. So very thankful for the little baby growing inside of me 

12. The health of our children and how well they are growing

You see, this journal was from February or March of this year....just a few weeks shy of us receiving Dillon's Trisomy 18 diagnosis. He had the fatal diagnosis. but. i. didn't know. 

I was still dreaming of nursery colors and arranging monogram letters. 

Part of me cannot believe that Dillon's time with us has come and gone. His life, so brief, yet so impactful, is over. One thing I know for certain....he has forever changed me. He has changed the way I see people and the way I see myself. He will forever live in my heart. I pray that in the days, weeks, months or years that remain of my life, I will give people the grace and love that God has given me; that ultimately God will be glorified through my life. So how does this happen? I believe one of the primary ways is by nurturing a grateful heart. One of my daily devotions, Jesus Calling, says this:

Photo Credit: Ashley Kenner Photography

A THANKFUL ATTITUDE opens windows of heaven. Spiritual blessings fall freely onto you through those openings into eternity. Moreover, as you look up with a grateful heart, you get glimpses of Glory through those windows. You cannot yet live in heaven, but you can experience foretastes of your ultimate home. Such samples of heavenly fare revive your hope. Thankfulness opens you up to these experiences, which then provide further reasons to be grateful. Thus, your path becomes an upward spiral: ever increasing in gladness. 

Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, and ever-present and well-proved help in trouble 

(Sarah Young pg. 341). 

Photo Credit: Ashley Kenner Photography

I mentioned that we also celebrated our son's birthday recently. When he was younger, we decided that we would purchase a special book each year in lieu of a birthday card and write a message to him on the inside cover. Our children receive a book that fits their interests at the time. The idea is that when they marry and begin to have children, they will receive their stack of books to pass along and read to their children. Toys and clothes weather with age, but books keep their allure and somehow transcend time with their mysteries. This year, we chose, The Boy and the Ocean, by Max Lucado. It seemed appropriate on many levels, especially since we are living at the beach. It’s a great mixture of adventure and gratitude for God's love for us as the Creator.

It is my prayer that, as our children grow, they will understand the importance of having a grateful heart, regardless of the circumstance. 

Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus. 

1 Thessalonians 5:16-18

God is our Refuge and Strength, a very present and well-proved help in trouble. 

Psalm 46:1 (AMP)

Finding Rest

 Friends, 

Thank you for praying for my most recent appointment with the Neurologist. I apologize for this delayed feedback, but, to be honest, I needed to take a few days to sort through things in my head and pray about all of the mixed emotions I am experiencing. I put so much hope into the appointment that the lack of answers left me feeling very discouraged. The good news is, the Doctor didn't see anything serious on my MRIs and the blood that was previously present in my spinal cord is now gone.  However, the original Neurologist said it was probably this blood that was causing my headaches and back pain.  So, it's frustrating that the pain is not getting significantly better now that the blood is gone.  

The Neurologist did say that the description of my headache at its peak, when I had to be hospitalized, is similar to a Thunderclap headache. I had not heard of these, so those of you that haven't either, here is some info from Mayo Clinic: 

Thunderclap headaches live up to their name, grabbing your attention like a clap of thunder. The pain of these sudden, severe headaches peaks within 60 seconds and can start fading after an hour. Some thunderclap headaches, however, can last for more than a week. Thunderclap headaches are often a warning sign of potentially life threatening conditions, usually linked to bleeding in and around the brain. 

Apparently, most serious issues would show up on specific tests and would be in the folds of my brain. These particular tests were not performed during our initial hospital stay and because so much time has passed and the intensity of the headache has lessened, the doctor does not feel it necessary to perform additional imaging at this time. Although the magnitude of my headache has decreased significantly, I have had an ongoing headache for approximately 10 weeks. Therefore, he has categorized my headache as a primary thunderclap headache, because it has sharp, sudden bursts of pain, but otherwise remains dull on medication. According to the International Headache Society, the presence of a thunderclap headache as a primary disorder is considered rare and should only be concluded if a through workup

has been completed to ensure nothing more serious is going on. This makes me question the diagnosis. He changed my medication, prescribed additional medication and is treating my headache as a migraine. Thankfully, one of the medications that worked well in the hospital is back in stock (after being out from a national shortage), so that has allowed me to sleep better than I have in weeks! Praise the Lord for a good night's rest! 

With all that said, the doctor still couldn't tell us what is causing the headache.  Blood is an irritant, so he guessed that it may have irritated the nerve endings in my spinal cord, and that is what's causing my headaches.  As far as my back, he thinks the pain is from the multiple punctures and trauma that my spine has experienced. At the end of the appointment, we left with more questions than answers, which was disheartening on numerous levels. Although it is slow and steady, I am thankful that healing is happening, I am just ready for the pain to go away and to get off meds!

Today I had an appointment with a physical therapist. We developed a plan for treatment and are going to try some dry needling (similar to acupuncture) in the next few weeks to hopefully relieve some pain. I am also taking a therapeutic yoga class. My range of motion is horrible, but at least I am moving. My teacher read a quote on the first day of class that has stuck with me, "If you are having a hard time seeing the light at the end of the tunnel...walk through the darkness and turn on the light." Just as with Dillon, I know that God is ultimately in control of this situation, but this was a good reminder to think positively, put one foot in front of the other and do what I can to help my body heal.

After Dillon was born and I was on bed rest from the spinal headache, I remember asking my husband, "What do you think the Lord is trying to teach me?" He said, "To Rest." This was before we moved, and we were still in transition and living out of suitcases and on mattresses on the floor of our home. I had been laying there for days, not wanting to think or feel, but knowing deep down that the numbness would eventually fade and I would be forced to meet my emotions face to face. At some point, I would have to talk to God. But it all seemed so overwhelming, so emotionally draining. Instead, I passed the time sleeping, pumping milk for the NICU babies, watching HGTV's Fixer Upper, reading books to my children and playing spider solitaire...mostly mindless activities that kept my mind occupied yet not engaged.  At one point after a long day of doing nothing, I looked up at the tray ceiling in the Master Bedroom at a verse the owner had applied years before we moved in, a verse I had read many times before, read, but not actually comprehended, until then. The verse was Matthew 11:28, "Come to me, all who labor and are heavy laden, and I will give you rest." I immediately burst into tears, opened my Bible and started praying. 

There has been much that the Lord has been teaching me the past few months and many blog posts that I have wanted to write, but haven't had the time or energy to put words and thoughts together. I have questioned what I should write about and if people would even want to read the scribblings from a Momma's hurting heart. But the reality is, writing for me is therapeutic, even if no one else reads it. It is a place where I can get thoughts and feelings out instead of leaving them bottled up, attempting to choke the life and joy out of me. This blog, is a place of respite. 

One thing I have never been is a very patient person and through this health journey, my impatience has been highlighted. I have been forced to slow down. Forced to rest. Even though I have spent much time being still, my mind has been busy thinking, either of Dillon, contemplating life or trying to figure out pain, both emotional and physical, which has left me mentally exhausted and even defeated at times. It is at these times when I am completely depleted that I fall before the Lord, crying out in anguish. Living next to the ocean has been both relaxing and a time of healing for our family. It has been a place where I have screamed out to God amongst the crashing waves and moonlight,  as well as a place where I have learned to laugh again while playing with my children, and smile, walking hand in hand with my husband while we search for shark's teeth. One thing I have observed is that grief, like the ocean tides is ever changing. There are moments when I feel stronger in certain areas and other times I can barely break the shoreline before tumbling upon the sand, weary from my struggle with the open sea. Perhaps that is one of the hardest parts of grief and loss....the world keeps moving on. This is of course a blessing and a curse. Each day I am a little further away from the time I felt Dillon's kicks; a little further away from the day I held my sweet son in my arms. In the midst of everyday life, of being a wife and a momma of two active young children, while also trying to balance grief and physical healing, I am utterly aware of my weakness. Perhaps this is another lesson from the Lord...."My grace is sufficient for you, for my power is made perfect in weakness." "Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." - 2 Corinthians 12:9

One of the songs I have on "Dillon's Playlist" is "Christ in Me" by Jeremy Camp. 

Click Here to watch the youTube video. 

These lyrics in particular have brought me comfort when I have felt like I have nothing left, like I am completely empty....

So come and empty me
So that it's you I breathe
I want my life to be
Only Christ in me
So I will fix my eyes
'Cause you're my source of life
I need the world to see
That it's Christ in me
That it's Christ in me 

Through the Eyes of a Child

A few weeks ago, I specifically remember waking up before the kids, something that rarely happens as I am usually awakened by their their tiny voices calling "Mommy!" As I made my morning coffee, I couldn't seem to shake the crushing weight of sadness. I was sad for Dillon, sad for our family and even sad for myself. As I began to prepare breakfast for the kids, since I knew they would be up at any moment, I wondered if it would be a good day...or a day that I just have to put one foot in front the other--a day that I just go through the motions of everyday life. 

The kids and I had an adventurous morning planned, but, to be honest, I wasn't looking all that forward to it. As I awakened our 4 year old son, his face lit up and the first words out of his mouth were, "We're going blueberry picking!" I couldn't help but smile...his enthusiasm was contagious. And then it hit me...although this is the most difficult time of my life, dealing with both the stresses of a move and the heartbreak of Dillon's diagnosis...to my precious first born, this is just SUMMER. He and his sister will never be these ages again; I will never have this precious time with them back. It may sound cliche, but for a moment I was completely overwhelmed with the beautiful innocence of childhood. In the midst of this storm, I am still a Mom. Not only a Mom to Dillon, but to my two other children as well. Children that need me. That need to be held. Played with. Fed. Bathed. Put to bed. Read to. Loved and, ultimately, ENJOYED. There is abundant life to be found in the present, with them, even in the midst of heartache. There is joy unspeakable now -- and there will be as well after the uncertainties with Dillon have come and gone.  I pray God will give me to strength to remember that and the grace to get through what is to come. 

So how do you handle something like Trisomy 18 with a child? This is something I have thought about considerably. My husband and I knew that we didn't want to completely hide what is going on, but how do you even attempt to explain the situation to a 2 and 4 year old? How do you tell them that their much loved, anxiously anticipated brother is going to die? The death of an infant is something that most adults have a difficult time accepting, much less toddlers.  So, after much prayer and guidance from those that have walked in similar shoes, we decided to tell them that their little brother is sick and may not be able to come home with us from the hospital. This is a tricky thing, because kids relate sickness to what they know--meaning they know they get sick, but ultimately get better over time. Because of her age, our 2 year old is mostly oblivious, but our 4 year old seems to understand the magnitude of the situation a little more (in the best way a young child can). As the questions came, we had to explain the differences between getting an illness that can be treated with medicine and one that cannot. We stressed that Mommy and Daddy and Sister are fine and that we are going to be okay, but God made little brother a little differently. Because of these differences, his little body does not work just the way it should, but that doesn't mean we love him any less. 

We talk to Dillon and sing to him, just as we would any other baby. We believe he feels how much we deeply love him. It is the most precious thing to hear our daughter sing "twinkle, twinkle little star" to him and it's music to my ears to hear them both tell him that they love him and goodnight before they go to bed. They ask to pray for him and delight in feeling him kick. Not long after Dillon's diagnosis and shortly after we broke the news to our children, our 4 year old said, out of the blue..."Mom, when baby Dillon is born, we may get to keep him for a minute!" He said this with such passion in his voice and hope in his eyes. I almost lost it. But instead, I was somehow able to pull it together and said, "That's right. We may get to keep him for a minute, or a few hours or maybe even a day. We just don't know yet, but we can always hope." 

We believe that God knows exactly how long Dillon's heart will beat and if we will get to meet him in this life or in Heaven. I try to remind myself to keep perspective. The minutes, hours and days seem long, but the years go quickly. This lifetime will be over in a blink and then I will have eternity to spend with ALL of my children. I am not saying I want to wish my life away.  I simply want to enjoy the blessings I have while I am here, alive on this earth, while also looking forward to eternity in a place where there will be no tears or suffering. Until then, I shall remember what my son has taught me...there is ALWAYS hope, even if it is just for a minute. 

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4 ESV

Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” And he took them in his arms and blessed them, laying his hands on them. 

Mark 10:14-16 ESV

Out of the mouth of babies and infants,

you have established strength because of your foes,

to still the enemy and the avenger.

Psalm 8:2 ESV

Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you.

Matthew 17:20 NIV

                 

Finding Stillness in the Midst of Chaos

Today I am 27 weeks and two days pregnant--almost to the 3rd Trimester! I praise the Lord I have been able to carry this sweet boy thus far and pray for the weeks and months to come. In my quiet time this week, the Lord has been teaching me to be still and trust Him. But what does this trust look like? As I am taken deeper into this journey, I am realizing that trust is a choice I must commit to daily -- it is not a one and done decision. Some days it seems like an easier option than other days, but a decision I am faced with regardless.

I want to share a song that has been on my mind a lot this week-- a song that I have desperately wept to as well as a song that has brought me great comfort. You can listen to it via YouTube by clicking here: Word of God Speak by Mercy Me

These lyrics have been especially powerful:

Word of God speak
Would You pour down like rain
Washing my eyes to see
Your majesty
To be still and know
That You're in this place
Please let me stay and rest
In Your holiness
Word of God speak

Several of you have asked specifically how you can pray for us during this time. Here are some things happening in the next 2-3 weeks that we would appreciate your prayers for:

1) Doctor appointments: This week, we will have another ultrasound with the high risk doctor, as well as a meeting with the grief counselor at the hospital where we will deliver. Please pray specially for the meeting with the counselor as we will be preparing Dillon's birth plan, immediate medical treatment decisions, arranging pediatric care if needed after birth, as well as preparing for cremation services (if necessary). These are, obviously, very difficult decisions that we honestly don't want to have to think about when preparing for the birth of our child. Please pray for strength, peace of mind and that Chris and I will be able to walk through these heavy emotions hand in hand as we trust in the Lord for comfort and guidance.

The first week of August we will also meet with a new OB doctor (for the hospital where we will hopefully deliver) as well as an appointment for a fetal echocardiogram to determine exactly what is wrong with Dillon's heart.

2) Upcoming move(s): We will be moving from our home at the end of this month and are currently in the process of taking our things to storage. We are thankful for family and good friends and their willingness to help us during this transition. We will move into a furnished home for about 40 days and then move again for about 9 months. After that time, we will move once again for about 10-12 months before our next assignment, which will probably be another 10-12 month move. Needless to say, I am trying to take one move at a time and think of each as it's own adventure. Please pray specifically for energy to finish packing/moving, that Chris and I will have patience with one another and the kids, for check outs/ins to go smoothly and that the kids would transition well in the midst of chaos!

3) Adjusting to a new area: With the military, we are accustomed to constant change, but that doesn't make it easier. Please pray for Chris' new job, the start of a new preschool for the kids, friends to keep me company when the days get long and especially for a Church family that we will all grow in.

4) Yoga teacher training: I am in the last two months of a 7 month teacher training. Although when I began my training I didn't realize life was going to get so crazy, I want to finish strong. Please pray that this would be a way to release stress instead of just an addition to an already packed "to do" list.

When I think of all that has to happen in the next few weeks, it seems intensely overwhelming. The weight of these things individually are enough, but together they become suffocating.

One of my devotions this week spoke directly to my heart. Hopefully, it will provide you with some comfort as well if you are in the midst of of a storm:

"DO NOT WORRY ABOUT TOMORROW! This is not a suggestion, but a command. I divided time into days and nights, so that you could have manageable portions of life to handle. My grace is sufficient for you, but its sufficiency is for only one day at a time. When you worry about the future, you heap day upon day of troubles onto your flimsy frame. You stagger under this heavy load, which I never intended you to carry.

Throw off this oppressive burden with one quick thrust of trust. Anxious thoughts meander about and crisscross in your brain, but trusting Me brings you directly into My Presence. As you thus affirm your faith, shackles of worry fall off instantly. Enjoy My Presence continually by trusting Me at all times. "

--Jesus Calling by Sarah Young

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. 

--Matthew 6:34

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 

--2Corinthians 12: 9

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. 

--Psalm 62:8

Embracing the Unknown

Restless…that is how I would describe sleep tonight. I lie awake with a million thoughts and emotions running through my mind…anxiety, hurt, denial, pain, anguish, fear, hope, love. Finally, I give up on the idea of sleep and, thus, I find myself here, at 2 a.m., in the quiet of my living room, pouring thoughts into the creation of this blog. To be honest, I have been toying with the idea ever since we received Dillon’s Trisomy 18 (T18) diagnosis. But where to begin…how to put all of my feelings into anything resembling a coherent thought? Exhausted and somewhat defeated, I relent. So, here it is…pure. raw. emotion. It is my hope that somehow, amidst my broken heart and empty words, someone sees the beauty of God’s love—somewhere, someone finds hope in the struggles of their own storms.

We are not promised a life without pain. I know this. Despite this, or perhaps because of it, I put my trust in my God. Not just the idea of God, but the living, breathing God. God of the Universe. God the Father. The full expression of God in the Trinity…Father, Son & Holy Spirit.

I lay Dillon’s life, his precious, helpless, beautiful, flawless life in the arms of my Lord and Savior, Jesus Christ. But does that mean I live without the fear of the unknown? No. Does that mean I do not dread the day I have to hold his little body and tell him goodbye? No. The tears come, like waves in a crashing sea; they rush over me, choking my ability to breathe, and then they slow into a steady stream, washing to shore the remnants of their wrath. I know I cannot go there. I cannot let fear get a foothold or I will be sucked into the unknown and attempt to play out different scenarios in my mind. Will I carry my son to term? Or, will he die inside of me? Will I be able to meet him, look into his eyes, feel his little soul? Or, will I be robbed of that experience and be left to hold the shell of his body? The word and idea is heavy…stillborn. Will he be strong, both in spirit and body? Or will the effects of T18 burden him to a debilitating state…leaving him gasping for breath and life?

These are my greatest fears, I think. Or is it that he will live? If so, how long will he be with us and what is the quality of his life to be? It is any mother’s hope to keep their child, but also to protect them, somehow, from pain and harm…but mostly, especially, to ensure they feel loved. wanted. treasured.

My heart is heavy with these thoughts, and then, I feel a kick…a tiny little kick that sends me so quickly back to the present. I stop and I remember, Dillon is here, alive with me now, safe in my womb. I don’t want to live in fear…I want to celebrate my son, Dillon Edward Allen, no matter how long his life may be. That, thankfully, is out of my hands. I pray I do not have to make a decision between life and death in the future, but I quickly dismiss that fear for another day. Today, I choose joy. I choose trust. I choose love.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 

Jeremiah 29:11