Our not so normal life…

"I will sing to the Lord, because He has dealt bountifully with me."

Abundant Life

Luelle is a little over one month old. What a journey it’s been from her diagnosis, to fetal surgery, to her birth. I continue to experience such a range of emotions; joy, anger, hope, bitterness, fear, awe, thankfulness, etc.

Luelle is truly a miracle. Over and over again the doctors have said how impressed and surprised they are at how well she is doing. A few have questioned the extent of her spine defect but we have MRI’s showing the severity of it. She shouldn’t be doing this well but God has chosen otherwise.

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Initially, when we started getting all this positive news about Luelle, I responded quite poorly. I convinced myself that the bad news was coming. Instead of being thankful I felt bitter. I thought about all we have been through with Lu and our other health issues and I was angry. I chose to be fearful of the future anticipating what bad things would happen. I felt guilty and heartbroken for all our friends at Ronald McDonald house whose children aren’t doing as well as Lu.

How am I to rejoice over our miracle when others are experiencing such heartache?

I don’t really know the answer to this but the Lord continues to speak into our lives. I have been reading and thinking through John 9.

“And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” (John 9:2, 3 ESV)

Our trials are not about our sin or our goodness. They are about the work of God being displayed through our lives. The fact that Lu is doing so well has nothing to do with us. We did nothing right or wrong to earn this. God saw fit to bless her. The fact that we and others struggle has nothing to do with us. God sees fit to give us trials and refinement in order to reveal Himself through it. It may be easy to talk about this theoretically but it’s not easy to live. Life is hard and full of pain. Pain beyond what we can imagine. I never in my wildest dreams thought that our family would experience the amount of pain, surgeries, hospitalizations, procedures, and medical issues that we have. Sometimes it is really hard not to be bitter.

I also think of dear friends who are experiencing hardships beyond what they ever dreamed. What I strive to remember is that God’s heart is to show us His miracles. God often works miracles in the darkest of places. I guess that’s what makes something a miracle, it surpasses all human or natural reason. If it were simple, easy, or rational it wouldn’t be a miracle. Experiencing these miracles mean seasons of darkness but without the darkness we can’t experience His glorious light.

I believe that God wants to personally intervene in all of our lives. Perhaps we miss the miracles all around us because we need to change our definition of miracle. God’s miracles in our lives are unique and personal to each of us. It could be healing, perseverance, peace in the midst of pain, hope despite desperate circumstances, or joy in the face of hardships. All of these are miracles.

The enemy’s goal is to steal the joy we can have in these miracles. He wants us to turn to fear, doubt, and anxiousness instead of choosing in the moment to see whatever miracle God is showing us.

My heart is for God to reveal His power, His miracles in all our lives. My prayer is that my friends who are hurting, even in the midst of their worst pain, that God would show them miracles.

I want to share our miracles. Not to brag or take any credit but to honor the incredible work God is doing. I want to give others hope that they can trust God in the darkest times because His light always shines brighter.

“The thief comes only in order to steal and kill and destroy. I [Jesus] came that they may have and enjoy life, and have it in abundance (to the full, till it overflows).” (John 10:10 AMP)

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Our Little Miracle

Luelle Eliora Ross was born on March 7th at 11:32am weighing 6 lbs 12oz and 19 inches long. My water broke early that morning so they performed a c section at 36 weeks and 6 days. The emotions of hearing her first cry and seeing her precious face were overwhelming. Never have I cried, prayed, or anticipated something or someone so much.

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Bobby and I were able to hold her in the operating room for a short time before they brought her to the NICU. What a moment it was for us to look at her and know that God has entrusted us with this amazing gift, this little girl.

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I was shocked at how much easier the c section was compared to the fetal surgery. It was surreal to be able to move and walk after four months of bed rest. Because I was so anxious to move again, I was up quickly and felt pretty much normal after a week. What a blessing. Lu and I have matching back scars (from the fetal surgery and my spinal fusion) and Bobby and I have matching abdomen scars (from the fetal surgery and his bowel resection). Our family is crazy.

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That first week in the NICU was a whirlwind. Lu truly did wonderfully. She was on oxygen for a day or so and had a feeding tube for 3-4 days until she was breastfeeding well and able to keep her blood glucose and weight up on her own. She had MRI’s, ultrasounds, tons of labs, and was seen by many different specialty doctors to start assessing her baseline and needs.

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She has feeling, strength, and movement down to her toes. Praise the Lord! Her left foot is turned in but is not locked meaning it’s not clubbed so hopefully with physical therapy we can correct that. Her ventricles are only slightly enlarged but have remained stable since her fetal surgery which is great. Her hindbrain herniation which had also mostly resolved post surgery has remained as such. Her back scar looks good and is healing well with no issues so far. There are many things that will have to be fully assessed as she gets older because as a newborn it’s hard to determine function etc.

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We have seen firsthand that the result of the fetal surgery can vary tremendously. We are humbled and grateful that Lu has done so well. We know it has nothing to do with us but that for some reason the Lord has chosen this for us. We pray to be thankful each day for our daughter and to be good stewards of this precious blessing we have been given.

Spina bifida is a diagnosis that requires lifelong monitoring because there are various things that, though stable now, can change quickly requiring treatment. It’s going to be a constant prayer for us to be joyful and hopeful each day trusting the Lord. He is walking with us each step and will give us what we need no matter what happens.

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After a week in the NICU, Lu was discharged. We shed many tears saying goodbye to our dear friends at Ronald McDonald. Our lives have been forever touched by these families.

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We had a special weekend in Philly reuniting with Chale and spending time with our families before heading back up to Massachusetts. Though our goal this whole time was to be able to go home as a family of four, it was difficult to leave.

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We are staying with a wonderful family from our church in Essex until we are able to move back into our apartment in May. Chale had a rough time initially after so much transition but seems to be getting more settled and is finally getting back to his easygoing, sassy self. Chale is truly smitten with his sister. He likes to just stare at her, loves kissing her, and cracks up when she makes any noises. Bobby and I are obviously exhausted and in newborn survival mode. Lu is gaining weight well and has started seeing all her docs in Boston.

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We have crossed many major hurdles but still have quite a few ahead of us. Life has been completely chaotic for so long I’m not even sure how to describe my emotions and faith right now. There are moments that I’m really angry about the challenges we have endured and what’s ahead of us. There are moments that I look at Luelle’s sweet face and I’m filled with awe at what the Lord has done.

(Photo credit: Melissa Zaldivar)

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Praising in the Chaos

I’m 36 weeks today. I’m quite surprised to have made it this far after undergoing fetal surgery. Time may have flown by for those watching but it has not gone very quickly for us. I have so many mixed emotions (and I’m sure crazy pregnancy hormones) that have been overwhelming lately.

When I think about what I would like to do in order to prepare our family, home, and life for another baby, our current situation is not exactly what I had in mind. We have been living out of bags for three months. Most of our belongings are packed in storage or our car. Chale has been back and forth from VA to PA and we have not been together as a family for much of this season. I haven’t been able to do anything physical since December 3. We have eaten terribly, and feel the effects, due to limited options of hospital food, take out, and poor self control. I have no stock of frozen crockpot meals and no cute girly nursery decor. It’s extremely frustrating to have hours to work on puzzles wishing I could use that time to do something productive to prepare for this new baby.

I am so excited to have a baby girl but feel so overwhelmed already. I had a breakdown yesterday thinking not only how unprepared I am for a newborn but a newborn with an unknown degree of issues. I feel defeated and we haven’t even started yet. There has been so much put into this pregnancy and surgery but the outcome isn’t that everything is now okay. Spina bifida varies extensively. Nothing is definitive. They will do baseline tests when she is born and then regularly throughout her life. Even if many of these tests are normal at birth, often these kids need shunts, surgeries, catheterization, castings, etc. as things progress. We can’t predict what her abilities and limitations will be and have to deal with issues as they arise.

Sometimes I’m able to not think about the future and to just focus on the present but ultimately that doesn’t take away the fear surrounding the unknown path ahead of us.

In the midst of my tears the Lord brought Gideon to mind. God came to him and said,“…The Lord is with you, you mighty man of [fearless] courage, (Judges 6:12 AMP). God told Gideon that he was going to save Israel from the Midianites. Gideon quickly reminded God that he was the least in his father’s house and was from the weakest clan. He was unqualified and unprepared. God’s response was “But I will be with you, and you shall strike the Midianites as one man,” (Judges 6:16 ESV). Further into the story, “The Lord said to Gideon, The people who are with you are too many for Me to give the Midianites into their hands, lest Israel boast about themselves against Me, saying, My own hand has delivered me,” (Judges 7:2 AMP). There were 32,000 Israelites with Gideon preparing to fight Midian. Gideon sent a large number of them home and then there were 10,000. God said there were still too many. God instructed Gideon to decrease the number of men again until there were only 300 Israelites. 300 Israelites versus several hundred thousand Midianites seems like a pretty terrible battle strategy. Why did Gideon go along with this seemingly ridiculous plan?

God called Gideon a mighty man of courage. God told Gideon that He would be with him. God wanted to give Midian into Israel’s hands in such a way that it was clearly God’s doing, not theirs. Gideon believed God despite appearing to be ill equipped and he moved forward boldly into a situation that seemed foolish. God was faithful. He delivered Midian into their hands.

God’s glory is what matters. Often the more desperate the situation the clearer God is seen in it. The less equipped and prepared I am for this next step, the more room I have in my hands, heart, and mind for God. I have to accept that things may be unpredictable, untimely, and unconventional. I have to trust that in the chaos God is able to do so much more than my simple strategies ever could.

So often I despise the unpredictable. I want to keep my 32,000 men, make my detailed, strategic battle plans, and go into the fight as prepared as possible. Why is this? I don’t want to confess my pride and relinquish my attempts at controlling my life. For Gideon, or me, to be okay with the crazy battle plan of only 300 men we must choose faith.

“Now faith is the assurance of things hoped for, the conviction of things not seen,”(Hebrews 11:1 ESV). Having faith in God means that me are assured of His faithfulness and promises even when they are not seen. Sometimes I say that I have faith in God but I still want to see his detailed outline of the next steps. That’s not faith. Faith is believing that God is good, powerful, and present even when I can’t see it, when things don’t make sense, or when things seem be crumbling around me.

After the Lord revealed to Gideon His plan to overcome Midian, Gideon “…worshiped. And he returned to the camp of Israel and said, “Arise, for the Lord has given the host of Midian into your hand,” (Judges 7:15). Gideon was so confident that God would do what He promised, that Gideon stopped and worshipped Him BEFORE the battle was won. That is the kind of faith I want. To be utterly convinced of God’s character that I can praise Him before I see His actions.

Gideon also proclaimed to others what God would do before it happened. That’s how we share our faith. We speak and live in such a way with others that we boldly proclaim God’s character regardless of our circumstances.

When I prayed and asked the Lord how to have this kind of faith, His answer wasn’t try harder, read more, or get your act together. To have this kind of faith, God simply wants us to be with Him. When we know Him intimately, we experience His character and deep faith is the natural outcome. When we daily walk with God through joy and pain, we learn how to live in faith.

Instead of being fearful and anxious about how unprepared we are for this new baby and this unknown journey we are about to embark on, my prayer is to stand in awe in God’s presence confident of His faithfulness to us. My hope is not in my plans or strategies but in His character that has never failed us.

 

With you all as my witnesses, I praise God now for our baby girl. I praise God for her life, no matter her limitations. I praise God for providing for our needs in His timing and ways. I praise God for being constantly present with our family even when things are chaotic. I praise God for the incredible things He will do in our lives not because of anything we have done but because He is great and He has called us.

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Emptied for Fullness

I’m 35 weeks and extremely thankful to have made it this far. On Monday we went in for our weekly appointment and expected the quick, usual “everything looks great, keep doing what you’re doing” update but were given different news. They diagnosed me via ultrasound with chorionic membrane separation and I had to be admitted to the special delivery unit immediately.

This condition is not common with a normal pregnancy but more common after having fetal surgery because of the extensive incision on the uterus. The baby is in the amniotic sac and with this issue the outer, protective layers of the amniotic sac (the chorion and amnion) which are supposed to be tight against each other start to separate. This is an ultrasound picture I found online showing membrane separation.

Extensive membrane separation often leads to premature labor, premature rupture of membranes (water breaking), or leaking of fluid externally or internally into the separated membrane space. This can mean an increased risk of infection for me and the baby. The good thing is because I am past 34 weeks there are less complications with the baby coming soon because she has met most developmental milestones. They will quickly do a c section if I have any fluid leak or my water breaks, if I go into labor, or if anything is causing issues for the baby. They attach me to fetal monitoring three times a day for an hour to check her heart rate and my contractions and so far everything has remained stable.

The doctors are very happy that I have made it this far. They would still like me to get to 37 weeks so baby girl is as strong and healthy as possible, but they are monitoring everything and can act quickly if they need to deliver. I am back on strict bed rest except for bathroom and wheelchair privileges and will have to remain in the hospital until the baby comes.

This was definitely a bit of a curve ball for Bobby and I. We had to quickly make arrangements for Chale so Bobby could stay at the hospital with me, move our belongings out of the Ronald McDonald house where we had been living for the past two months, and be prepared to remain at CHOP until after my scheduled c section on March 10th.

This season more than anything has emptied me. I’m being stripped of trying to control, plan, and predict my timing, surroundings, and future. Honestly it feels cruel at times. Then I step back and see grace in this. I am completely confident that God is preparing Bobby, Chale, baby girl, and I for the journey ahead of us. God has big plans for us. What or when or how I have no idea but He has given us a calling and vision that I know will come to be. Now, more than ever, I feel at peace about the unknown future because I am seeing His faithfulness in the present. I’m no longer trying to figure things out, I’m learning to be. To be present with the people, surroundings, pains, joys, and opportunities I am facing. Instead of trying to define and understand what God is doing, I am learning to experience Him in each moment.

In the midst of hardships, theoretical Christianity falls short. I don’t care what I think I understand intellectually, when life is overwhelming I need to experience God, to hear, feel, and see Him. If my husband, Bobby, tells me once he loves me, theoretically I could recall that when I’m insecure or feeling unloved. I don’t want to just remember that he said that. I want to continue to experience his love. I want to hear it again, to feel it in his actions, and to see it in his life. He also wants to continue to show me his love. He daily sacrifices for me and constantly lives out his love for me.

God longs to reveal Himself to us. We’re cheating ourselves when we aren’t bold enough to ask Him to. The Lord uses the emptying of ourselves to make us more willing and humble to receive from Him. He is lovingly guiding us to a place where all we can say is “God, we have nothing left. All we need is you.”

It’s incredibly painful and scary to be emptied. In this emptiness I am learning to receive the fullness of God and there is nothing greater. I am almost giddy anticipating what the Lord has for us. I long to be made less and less so I may experience Him more and more.

He must increase, but I must decrease. [He must grow more prominent; I must grow less so.] …For since He Whom God has sent speaks the words of God [proclaims God's own message], God does not give Him His Spirit sparingly or by measure, but boundless is the gift God makes of His Spirit!” (John 3:30, 34 AMP)

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Storms

I’m 34 weeks, 23 days from meeting our baby girl. We are so thankful that thus far I have had no issues from fetal surgery, no preterm labor, and that baby girl remains stable. We have been in Philadelphia near CHOP since December 1st and will be here until she is discharged from the NICU likely mid to the end of March. Then we will head back up to Massachusetts where she will need to be followed by the specialists at the spina bifida clinic at Boston Children’s and start early intervention therapy at home.

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This has been the hardest season we have ever had to walk through. It kind of scares me to say that because we have said that before about trials, surgeries, etc. in the past but those have now been topped. We have been brought to some of our weakest, emptiest, lowest moments in this. It has not been easy and our trials are not going to be over once she is born. This is an overwhelming reality at times.

A few months ago the Lord had put the passages about Jesus calming the storm on Bobby’s heart (found in Matthew 8, Mark 4, Luke 8). We have read and talked about them many times since being here.

“And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep. And they went and woke him, saying, “Save us, Lord; we are perishing.” And he said to them, “Why are you afraid, O you of little faith?” Then he rose and rebuked the winds and the sea, and there was a great calm.” (Matthew 8:24-26 ESV)

Not until reading these passages repetitively in this season have I realized how frustrating this story is. The disciples were with Jesus on a boat, a huge storm hits, and the boat is filling with water. They are literally starting to sink, their lives are in danger, and Jesus is sleeping. If I were in their shoes, I guarantee I would be freaking out and it doesn’t seem that ridiculous of a response given the circumstances. Honestly, it makes me mad that Jesus seems to give them a hard time for their fear. Seriously, Jesus? The boat is sinking, you’re sleeping, they are panicked, and you expect them to be calm?

After rereading these passages many times I tried to set aside my emotions and previous interpretations and to look at exactly what Jesus said. My first observation is that He rebukes the storm, He doesn’t rebuke them. I used to read these verses assuming Jesus had this annoyed, won’t you ever learn attitude towards the disciples. Jesus actually doesn’t command anything, He asks the disciples questions. Jesus often asks questions instead of making statements. He asks them why they are afraid and where their faith is. I don’t know His tone but I know His heart and Jesus doesn’t get impatient or tired of loving us. Read His words again and think about Him asking these questions out of deep love and concern for them. “Why are you afraid?… Where is your faith?” He already knows the answers so why does He ask these questions?

Perhaps He is asking these questions to help the disciples see their own hearts. Maybe He wants them to really think about what they are afraid of and where there faith lies. Another strategy could have been to ask these questions on dry land during one of their times together but He didn’t. Maybe Jesus knew that He needed to bring the disciples to a place where they were completely vulnerable for them to answer these questions honestly.

If I had been asked about my fears and faith a few years ago I would have given you a shallow, hypocritical answer. I probably would have quoted verses like “All things work together for the good of those who love the Lord…” or “I can do all things through Christ who strengthens me…” not even truly understanding what I was saying but just repeating what I had heard all my life.

In the storms, we are stripped bare of our masks and pat answers and our hearts and raw beliefs are able to be seen. What is truly important to us is revealed when we are desperate.

As painful as it may have been, I think Jesus was being gracious to the disciples to bring them through that storm to reveal the state of their hearts. I think He wanted to challenge their fears and faith. I think He had such incredible things in store for them and didn’t want them to settle for mediocre faith. He had to bring them to the place where their faith failed them so He could show them where deep faith could begin.

We can’t experience the extraordinary power and presence of God in our human strength and understanding. We have to let go in order to receive.

It can be terrifying and painful to let go, but holding on means resisting to receive the incredible things the Lord has in store for us. Sometimes when I write these posts I fear that it sounds like I have this all figured out. Please know that though my posts may seem polished my faith is not.

Everyday I question. How am I going to make it through this season? Everyday I doubt and am tempted to ignore truth. Is it worth it to persevere? Everyday I am faced with a choice. Do I want to continue in faith or attempt to forge my own path? Some days the answer comes quickly and easily, but most days I have to fight.

I know in my heart that freedom and joy come from walking this journey set before me in faith. I know that this and every storm ahead is revealing what I am lacking so I can receive in abundance from the Lord. The Lord truly has grace, joy, peace, and love overflowing that He wants to pour onto me. He also knows that I need the storms to pry my fingers from clinging to my way of thinking and my way of doing things. He graciously has to bring me to my deepest fears to show me the extent of Himself. Though it means continuing to endure storms, I pray He never stops challenging the depth of my faith so I may continue to experience the depth of His endless grace.

“If the life of a man or woman on earth is to bear the fragrance of heaven the winds of God must blow on that life, winds not always balmy from the south, but fierce winds from the north that chill the very marrow.”
― Elisabeth Elliot

“If we hold tightly to anything given to us unwilling to allow it to be used as the Giver means it to be used we stunt the growth of the soul. What God gives us is not necessarily “ours” but only ours to offer back to him, ours to relinguish, ours to lose, ours to let go of, if we want to be our true selves. Many deaths must go into reaching our maturity in Christ, many letting goes.”
― Elisabeth Elliot

“Our vision is so limited we can hardly imagine a love that does not show itself in protection from suffering. The love of God is of a different nature altogether. It does not hate tragedy. It never denies reality. It stands in the very teeth of suffering.”
― Elisabeth Elliot

This picture is from our boat ride on the Sea of Galilee a few years ago.

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Always Grace

You know those commercials where they show things being broken or damaged? Those commercials stress me out so much. I hate mess. Letting our son feed himself still makes me kind of anxious. When he pours spoonfuls of yogurt on himself or smears sauce on his hands I get tense.

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My uber type A personality is being refined a bit through our experiences these past few months. Let’s just say relocating to Philadelphia and getting fetal surgery was not exactly part of my plan. I love checklists, schedules, clear cut answers, predictability, and rules. The upside to this is that I am organized, usually punctual, very driven, and efficient. The downside is that I am controlling, struggle with change, not very creative, and don’t do well with gray areas. I am realizing how dangerous this perspective can be spiritually. When I view God in this black and white, dichotomous perspective I am not seeing God for who He is but who I want Him to be. God does not fit into my box of reason, rules, and predictability.

I struggle with wanting clear rules to follow, definitive answers to cling to, and logic to always explain my situation and outcomes. I want God to always act in a way I understand and to keep me informed of His reasons. Basically, I want God to be a robot.

The beauty of faith in a person and not a religious standard is this remarkable opportunity for an intimate, experiential relationship. God is creative, full of wonder, beyond my thoughts and dreams, and above logic and reason. He doesn’t want to order me around, He wants to know me, to walk with me, to reveal His tender love to me.

For many years I lived a legalistic faith and viewed God like a robot. Only in the last few years have I begun to surrender, humble myself, and truly experience God for who He really is. Some days I want to go back to being a mediocre, hypocritical christian because it was predictable and easy. But I was miserable living that life. There was no real joy. I felt trapped. I was a slave adhering to rules and standards I felt I must keep. I longed for meaning in my life. I always felt like I wasn’t enough.

I’m learning to walk with God by believing that He speaks, is powerful, and is very much present. He is not some distant force far away but is a person who feels the aches in my heart, who longs to meet my needs, who loves to see me smile, who speaks directly to my heart in a way that no one else can, and who wants to hold my hand on this journey through every joy and sorrow. I can honestly say I am more broken and raw than ever before but I’m experiencing real joy. I’m no longer a slave but free. Life is more complicated but oh so much richer. It’s like I was gnawing on plastic, fake fruit unsatisfied and now I’m tasting the complexity, depth, and sweetness of the real thing. It can be sour, sugary, smooth, bitter, or fragrant. The variety is endless. God is limitless and as we drink from His fountain of living water we will never be thirsty again.

Life is messy and chaotic. We experience loss, pain, and heartache. Because God is a person that wants to walk with us, He not only can handle the mess but brings beauty from it in ways we can’t comprehend. He longs to usher us into freedom. All that is required is to follow. We must let go of our checklist of good and bad and living in our predictable box. We must die to our way of thinking in order to truly live in the freedom He longs to give.

This means that every day is an unpredictable adventure. My previous way of living meant that each day I felt the pressure of being good enough, doing things myself, figuring out the next step, and handling every hurdle in my own, ever-failing strength. Walking with God means that every day I am able to ask Him for the grace I need to face whatever is ahead of me. I can trust that He knows fully my future and my past. I can rest in hope knowing I will never be alone no matter how difficult my trials are. When walking with God, absolutely nothing is wasted. He gives me what I need even when it’s not what I want. I don’t have to stress about perfectly following rules because God can handle my insufficiencies. He isn’t worried about being rushed because He can do the impossible. He doesn’t want to give orders to a slave but wants to take me on a journey of mystery, freedom, depth, grace, growth, beauty, and redemption.

Because God isn’t a predictable, dull drill sergeant our experiences will be high and low. Sometimes they make sense and other times God is working in ways we can’t understand.

A precious boy who has been in the NICU at CHOP since June whose grandma we have gotten to know passed away yesterday.

The ultrasound tech who we shared our story with months ago cries every time she sees us at the hospital because she says she knows our paths were supposed to cross and that she has been deeply impacted by our words.

Our baby girl has spina bifida and will have struggles whether minimal or severe.

We have received checks in the mail from complete strangers.

We are more drained, discouraged, and exhausted than ever before.

We have gotten to spend more quality time together as a family than most people will ever be able to.

We have never been more isolated from family and friends.

I’ve never felt so free to pray with raw emotion.

I’ve never felt like giving up as much as I have the past few months.

The body of Christ and the church has never felt so real or been such a tangible support.

I have never been more afraid or uncertain of the future.

God has never been as present or powerful as He is to us now.

I believe that when walking with God, all is grace. Sometimes this grace is disguised and other times it is revealed but it’s all grace. This is real freedom, walking every day with God who lavishes us with grace we don’t deserve in ways we can never fully understand.

“Gifts of grace come to all of us. But we must be ready to see and willing to receive these gifts. It will require a kind of sacrifice, the sacrifice of believing that, however painful our losses, life can still be good—good in a different way than before, but nevertheless good.”
-Jerry Sittser

Here are some of our dear friends here that have impacted us more than they will ever know…

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Treading water

I’m a terrible swimmer. The only stroke I know is doggy paddle. I have embarrassingly horrible lung capacity. I just do not enjoy swimming. If I were to describe our life right now it feels like we are treading water. It’s uncomfortable and challenging. Some days it’s sunny and we are with other people and I forget we are treading water. Other days it’s stormy and I feel like we are drowning. I confess that sometimes I wish we were called to another trial. I love running. Why can’t I be training and enduring through a marathon?

But this is what we were called to. This season is where we are and this trial is what we were given. This was hand picked for us. God is aware of every wave, every breath, every storm. He also knows every fear, doubt, worry, and struggle in my mind and heart. He already knows that we will overcome because He has done it for us. He knows the victory is ours to claim, even now, if we choose to.

The water is cold and harsh. We’re exhausted and just want to be on solid ground.

I want so badly to be home. I long for our beds, our kitchen, our tiny little apartment, our cozy space. Everything feels complicated right now. My mind is racing because I don’t see an end to the complications we are facing. I feel selfish and guilty that things are going well medically with me and the baby and yet I’m so tired of this season. I want to be content no matter what my circumstances and yet I know our reality isn’t easy.

I feel like I’m striving for something that I know deep down won’t satisfy. In my discomfort, I think that getting out of this season will be what calms my troubled heart. I tell myself once Bobby finishes his class work, after the baby comes, or once we are back home everything will be okay. Then I remember my fears and discontentment when life was “normal”. Getting back to “normal” isn’t the answer, as tempting and simple as it sounds.

I know that the answer has nothing to do with my surroundings. I need to stop treading water. I need to stop striving and let go. It’s like I’ve been struggling to stay afloat and God is patiently next to me saying I’m here when you are ready. His voice is tender. His hands are strong. His eyes are full of tears as He watches me try to do it on my own knowing I can’t. His heart aches for me to release my burden and to be overwhelmed by His love.

How do I stop treading water in the middle of the ocean? How do I trust and wait with joy and contentment when our circumstances are difficult and our future unknown?

Honestly, I don’t know. As I pray and ask God how, all that comes to mind is “just look to Me, child.”

God isn’t asking us to earn His love.
He’s simply asking us to turn towards His love.
-Ann Voscamp

My prayer is to look to Him who asks nothing of me but wants to give me rich, abundant life.

“Turn my eyes from looking at worthless things; and give me life in your ways.” (Psalm 119:37 ESV)

Here are some pictures of our baby girl. Bobby and I were moved to tears to see the one we have been praying, sacrificing for, and anticipating. We are so in love. I think her little nose and mouth look like Chale’s. We get to kiss those cheeks in 7 weeks.

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Living in the balance

I’m 29 weeks pregnant and almost 6 weeks post fetal surgery. Baby girl is doing great. We have had a name pick out for awhile but are keeping everyone in suspense until her arrival. She is 3.2 lbs and continues growing strong. Her hindbrain continues to show improvement where she had the herniation. Her ventricles remain stable with no increase in size which is great. She continues moving her legs well and they are continuing to watch her left foot. It seems to be turned in but so far it doesn’t seem like the whole ankle but perhaps just the muscles in the foot which is easier to correct.

My c-section is scheduled for March 10th, only 8 weeks away!

Yesterday we also met with the spina bifida coordinator at CHOP who helped us start the process of planning our baby’s care post birth. Our baby needs to be followed closely by a spina bifida clinic. This is a team of specialists who will regularly assess and treat our daughter. The team is made up of neurology, orthopedic, urology, gastroenterology, occupational and physical therapy, early intervention therapy, etc. We are excited to get connected with the spina bifida clinic at Boston Children’s hospital which seems to be highly recommended. We will stay connected at CHOP and come back over time for assessment and likely second opinions if issues arise.

Thanks to our family being willing to help out with Chale, Bobby has been working diligently on his seminary class work and is making great progress. I can’t wait until after January 24th when he will turn in everything and be able to actually take some down time for himself and not feel the burden of having school work to do.

We continue to feel deeply blessed by the other families here that we have gotten close to. I’m blown away each time I meet a new family and hear their story. We’ve met so many precious children who are fighting for their lives. Many have to travel back and forth to CHOP every few months for tests, treatments, etc. Some don’t know what the next appointment with mean for their child. There are families here from all over the world, so far from their homes and families, and in such desperate situations.

It has been strange for me to be in a season where many things that I usually do or focus on are not applicable. Having a clean house, meal planning, regular dates with Bobby, decorating my home, weekly Bible studies, planning play dates, etc. are not a part of my life right now. Not doing these things has made me realize how often I wrongly place my identity and worth in them. There is nothing wrong with wanting a clean, organized, pretty home, focusing on my kids or husband, or pursing friendships and community but ultimately this is not what life is about.

The challenge is that these things are good and I need to do most of them but I need to learn how to do them in a way that doesn’t take away from my ultimate purpose. This past Sunday, Bobby and I were able to go to church for the first time in months. It was special to be still with other believers and to rest from the craziness going on in our lives. I was moved to tears as we sang one of my favorite hymns. As I let the words fill my mind and heart I couldn’t help but feel overwhelmed by my need for something outside myself. Then I was filled with peace and joy as I realized the depth of love God has for me. He continues to patiently, tenderly, and intimately pursue me despite my weakness, doubts, and selfishness.

Once I recognize my deep need for help and humbly accept the outstretched arm of God who longs to overwhelm me with His grace, nothing else matters. There will be pain, frustration, stress, and challenges but nothing that compares to the fulfillment, joy, and purpose I have in God. In Him, I truly can face whatever is before me whether that’s our cranky one year old or a life changing diagnosis.

I need to cling to God in my deepest fears but I need him just as much in my daily frustrations. This is the balance that I must prayerfully seek. I need to keep my focus and mind stayed on what God has done for me and who I am in Him. I need this mindset to affect how I view everything from cleaning my home to dealing with a miscarriage. Every area of my life needs to be viewed through the lens of God’s power, love, and grace.

I pray that our time here with these families bonding as our kids struggle with scary diagnoses, has changed the way I view my purpose and priorities. I never want to grow numb to the what God has done for me. I never want to care more about eating healthy, being organized, or having the perfect home/ marriage/ kids than I do about who God is and His calling for me. I need God every moment to guide my thoughts, actions, and words to help me live a life where He is the center and not me or my agenda. In Christ alone can I experience peace in the midst of chaos.

Before the throne of God above
I have a strong and perfect plea.
A great high Priest whose Name is Love
Who ever lives and pleads for me.
My name is graven on His hands,
My name is written on His heart.
I know that while in Heaven He stands
No tongue can bid me thence depart.

When Satan tempts me to despair
And tells me of the guilt within,
Upward I look and see Him there
Who made an end of all my sin.
Because the sinless Savior died
My sinful soul is counted free.
For God the just is satisfied
To look on Him and pardon me.

Behold Him there the risen Lamb,
My perfect spotless righteousness,
The great unchangeable I AM,
The King of glory and of grace,
One in Himself I cannot die.
My soul is purchased by His blood,
My life is hid with Christ on high,
With Christ my Savior and my God!
-Charitie Bancroft

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Remembering Our Calling

Today I am 28 weeks pregnant. We will meet our daughter in 9 weeks or less. We are praying hard that I do not go into labor before at least 30 weeks but ideally as close to 37 as possible. I am over 4 weeks out of fetal surgery and healing well with no issues so far. My pain still comes and goes which is frustrating. Sometimes it’s really painful depending on the baby’s position but I’m just thankful to feel her moving and kicking even when it hurts.

I am so thankful to not be so isolated on strict bed rest anymore and to be able to leave the bedroom and join Bobby and Chale for meals and to sit downstairs doing puzzles, reading, or watching TV. The time goes by much faster and I am able to talk and be with other families here at meals and during the day in the family room. We do miss home. We miss having our own space and being in our own beds. It’s challenging living out of bags for months in a small room.

Many of you know our story. God has given Bobby and I a specific calling. Here’s an excerpt from an earlier blog post that explains what the Lord has put on our hearts.

“One morning in May 2011, Bobby was praying and asking the Lord what He had in store for us. The Lord reminded him of the Sword of the Spirit that lives in us as believers and Bobby prayed and asked the Lord what he should do with that sword. Bobby felt the Lord say ‘set captives free.’ I had been out of town and when I got back, Bobby told me he had a meaningful prayer time but we weren’t able to talk about it right away. Two nights later, we got news that one of Bobby’s good friends just had a baby that was born with some severe issues. We were broken for them, another family that the Lord allowed to cross our path that was suffering. Bobby went out to the living room to text his friend and I was in the bedroom crying and praying for this family. I asked the Lord what He wanted us to do with all these hurting people that were in our life. I felt so clearly the Lord say, ‘set captives free’. I had no idea what it meant but I knew that’s what God told me. Bobby and I went to bed but the next morning the very first thing that came to my mind was what the Lord had told me the previous night. I told Bobby that I had been praying and thought it was weird but so clearly felt the Lord tell me ‘set captives free’. Bobby looked stunned when I told him. He right away told me about his time with the Lord a few days prior when God told him the exact same thing. He showed me the exact words he wrote in a journal entry. We were amazed, humbled, and excited to continue to pray and ask the Lord what this meant.”

This calling to set captives free has been the basis of God speaking and leading us through some crazy, difficult times. We’ve gone to the Middle East, had a miscarriage, quit our jobs and moved states away to go to seminary, faced multiple surgeries and health trials, completely trusted God and surrendered our finances to Him, and now put seminary on hold and relocated our family to Philadelphia for at least four months to have fetal surgery and do all that we can for our daughter with myelomeningocele.

We are currently living at the Ronald McDonald house in Philadelphia. This is the first house opened but there are now over 300 world wide. Their mission is to house and support families of seriously ill children. We are surrounded by hurting people here. We’ve met a family here from Venezuela getting treatment for their one year old daughter with a rare brain tumor. Another family had twins born at 21 weeks and one only lived three weeks and the other is 6 months old and has never left the hospital. Every family here has a story and they all are painful.

Bobby and I are moved to tears daily by the stories we hear and the people we are privileged to meet. As hard as it was to get the diagnosis we did for our daughter and to walk this difficult journey, we know we are right where we are supposed to be. This is our calling to help hurting people, to set captives free. Not only are we surrounded by suffering families, we are suffering with them. It would be foolish of me to think we could ever help those who are hurting without experiencing hurt ourselves.

As I fight to cling to hope for myself and our daughter, I long to help others battle for hope. Bobby and I know deep within this is what we are called to do. To live a life of authentic faith that experiences God intimately in the midst of joy and trials, so that the God who is present can use us as broken vessels to set captives free.

I would rather suffer and live a life leading others to freedom than to live a life of comfort blinded in captivity. There are days I consider recanting that statement but in my heart of hearts I know it’s worth it. It’s worth it because Jesus suffered and died in order to set us free. He is our hope. I don’t know what is going to happen to our daughter. I will never try to say I know exactly what any of these families here are facing or what will happen with their children. But I firmly believe that we can rest assured that God will remain faithful, constant, and good. He will carry out His perfect will for us which though at times is painful, it’s truly what we need.

This is the hope I’m fighting to cling to and the hope I pray I can lead others to. That we can depend and rest in God’s perfect character even when He chooses not to act according to our desires. His grace is not always painless but it will always lead to freedom.

My hope is built on nothing less
than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
but wholly lean on Jesus’ name.

On Christ, the solid Rock, I stand;
all other ground is sinking sand;
all other ground is sinking sand.

When darkness seems to hide his face,
I rest on his unchanging grace;
in every high and stormy gale,
my anchor holds within the veil.

His oath, his covenant, his blood
support me in the whelming flood;
when all around my soul gives way,
he then is all my hope and stay.

When he shall come with trumpet sound,
O may I then in him be found,
dressed in his righteousness alone,
faultless to stand before the throne.
-Edward Mote

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Soul Questions

This week has been so much harder than I thought it would be. My pain has improved significantly since fetal surgery and I have only needed pain meds minimally. I’m so thankful to be physically greatly improved. No contractions or issues this week which is also a blessing.

Emotionally, I am a mess. Chale came back on Tuesday. It is so special to see his smile, hear his laugh, and to be together as a family. I am having an extremely hard time being on bed rest. It feels like torture to not be able to do anything. I hate watching everyone else carry, play, feed, and comfort my son. I feel so helpless as a mom. He is too young to understand, which I know is a good thing, but it doesn’t make it any easier. I have many irrational fears. I fear that after months of not being able to take care of him that Chale isn’t going to want me anymore. He already doesn’t really want to be with me because he doesn’t understand why I’m just in bed all the time and won’t play with him. He is very emotional and not sleeping well because our life is constant chaos. I hate seeing him like that and know there is little I can do.

We had been on the wait list to get into the Ronald McDonald house in Philadelphia and finally got in. This is a huge blessing and we are so incredibly humbled and thankful to be able to stay here until the baby comes. The staff here is wonderful. The facility is great with play places for Chale. They provide meals every night and we can use the kitchen to cook our own food too. There is a community of families here all experiencing their own trials with children in the hospital. Many in far more difficult situations than ours with children fighting for their lives against cancer etc. There are a few other families here who also had fetal surgery which is such a blessing. I’m looking forward to spending time with them hopefully.

I have to stay in bed and eat meals in the room because my bed rest is so strict right now. I feel like I am in prison. I know that this is best for our baby but it is so difficult to be isolated much of the time. Being alone makes it much easier to let my mind spiral in dark, discouraging places. I know Bobby is having a hard time too but on the other end of the spectrum. He has to do everything. He had to move all of our belongings over here thankfully with help from his family. He has to try to get us settled and organized here so we can create some sense of normal for the time being. He has to entertain and care for Chale and get food for both of us. He hasn’t touched his school work which has to be finished by January 24th. I know he is exhausted and doesn’t have time to process anything right now.

Our life has been such that Bobby and I have always been great teammates in caring for Chale. From day one we got up in the middle of the night together, we tag team meals, baths, bad diaper changes, etc. I love that we work together and are able to both be so involved. Being on bed rest just feels so wrong. I feel like I am just sitting on the sidelines while Bobby is having to face the battle by himself. I desperately want to fight by his side and I can’t right now, at least not in the way I want to and am used to. This feeling of being stuck and unable to act is something that I know others face. Many feel these emotions and struggles in their own trials.

Bobby reminds me often that I am fighting alongside him the most important battle, the fight for our daughter’s life. Being on bed rest is allowing her to grow, heal, and have the best chance at being born as close to 37 weeks as possible. I do believe that, it’s just more difficult to fight for someone I’ve never seen or met. That’s where the doubts come in.

I confess I am really struggling with bitterness and despair. I don’t feel like fighting the negative thoughts and complaining anymore. I feel a deep sense of despair and I hate it. I don’t know how to fight it and I am not trying very hard to. I have a constant stream of fears and questions running through my head.

How are we supposed to prepare our family and home for a new baby with special needs when we aren’t home and our family is living in chaos?

How do I believe that I am being heroic for my daughter when I feel like I’m neglecting my son and husband?

How am I supposed to come away from this stronger and not weaker?

As I feel hopeless and weak, how do I learn how to eventually teach our daughter to be strong when she will be physically weak?

How do I not worry about Chale when his life is being turned upside down?

How do I not feel isolated from my community when we are so far away from everyone we know and I can’t go to church or leave the room?

How do I count my blessing when our trials seem to be all consuming?

How do I let the Lord carry us through when I have no idea where we are going or how I am going to cope with what we are facing?

How do I not doubt when our life looks so different than we ever imagined?

How do we prepare for a journey of unknown obstacles?

How do I rest when my mind is constantly trying to figure out the next step?

How do I try to model peace for Chale in the midst of chaos when I am not at peace?

How do I not get bitter when we are facing more than I can bear?

How do I cling to truth when I feel too weak to fight my emotions of despair?

How do I be still in a more real way than ever before?

I cry all the time because I feel so frustrated and overwhelmed. I know so many truths and promises from God in my head but my heart aches with this struggle that I can’t grasp or seem to fight.

I have no answers but in the midst of my dark pit other more powerful questions come to my mind…

Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? (Matthew 6:26, 27 ESV)

Yet these are but [a small part of His (God's) doings] the outskirts of His ways or the mere fringes of His force, the faintest whisper of His voice! Who dares contemplate or who can understand the thunders of His full, magnificent power? (Job 26:14 AMP)

“Hear this, O Job; stop and consider the wondrous works of God. Do you know how God lays his command upon them and causes the lightning of his cloud to shine? Do you know the balancings of the clouds, the wondrous works of him who is perfect in knowledge? (Job 37:14-16 ESV)

Where shall I go from your Spirit? Or where shall I flee from your presence? (Psalm 139:7 ESV)

Then the Lord answered Job out of the whirlwind and said: “Who is this that darkens counsel by words without knowledge? “Where were you when I laid the foundation of the earth? Tell me, if you have understanding. “Have you commanded the morning since your days began, and caused the dawn to know its place, “Have you entered the storehouses of the snow, or have you seen the storehouses of the hail, Who has put wisdom in the inward parts or given understanding to the mind? (Job 38:1, 2, 4, 12, 22, 36 ESV)

Do you give the horse his might? Do you clothe his neck with a mane? Is it at your command that the eagle mounts up and makes his nest on high? (Job 39:19, 27 ESV)

Are you so foolish? Having begun by the Spirit, are you now being perfected by the flesh? Does he who supplies the Spirit to you and works miracles among you do so by works of the law, or by hearing with faith…? (Galatians 3:3, 5 ESV)

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? (Romans 8:35 ESV)

I’m not there yet, but I pray that eventually I am able to respond from the depths of my soul with such humility and awe as Job:

“I know that you (God) can do all things, and that no purpose of yours can be thwarted. ‘Who is this that hides counsel without knowledge?’ Therefore I have uttered what I did not understand, things too wonderful for me, which I did not know. ‘Hear, and I will speak; I will question you, and you make it known to me.’ I had heard of you by the hearing of the ear, but now my eye sees you; therefore I despise myself, and repent in dust and ashes.” (Job 42:2-6 ESV)

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