Blessed are those who mourn…

On April 11th, 2013, my great-grandmother, Lucille Stout, passed away. She lived her whole life with a passion for the Lord and raised her children, grandchildren and great-grandchildren to know about grace, love and salvation. Her life was a long and beautiful testimony that following God no matter what is worth the payoff. One night, at the age of 98, she went to sleep and never woke up. She had no pain. She didn’t suffer from disease, she didn’t have fear. She simply fell asleep and met Jesus.

I grieved deeply for her, mostly because her life was so rich that I regretted not getting to know her better. I wished that she would have been able to see my kids get older, to meet my youngest son who hadn’t made his entrance into the world and to see the legacy of what her faith had produced. I also simply missed her face and especially her laugh.

Jesus promised us in the Sermon on the Mount that those who mourn are blessed because they will be comforted. It was easy to feel God’s comfort with the death of my great-grandmother. Although I missed her terribly, I knew that she lived a wonderful life that was rich in love, laughter and faith. Her death coming so peacefully made the comfort sweet because I felt that God had rewarded her life of service with an easy transition home.

On August 5th, 2015, my grandmother, Ruby Stout, passed away. Again, she was a godly woman who raised her family to know that Jesus loved them more than anything else in the world. Grandma came from an abusive home. She was often left alone with her younger siblings for a week or more at a time to care for them when she was under 10 years old. She never shared the details of her abuse, but told us only that once she met Jesus in church as a child, she promised never to treat her children the same way that she was treated, and she never did. She exuded God’s grace through taking care of children, her kids and grandkids and all of the little ones that she taught in Sunday school.

Grandma’s transition to heaven was harder. She developed dementia and we watched as she became forgetful, lost words, and settled down peacefully into old age. As a music therapist, I had the opportunity in the past to work with a terminal patient who had dementia and a history of child abuse. She used to hide in closets at her assisted living facility and cry because she thought her father was coming home to beat her. Without telling my family, I begged and begged God to not let this same thing happen to my grandmother. This was the comfort that I found in her transition as she quietly succumbed to confusion and remained blissfully unaware. God had heard my prayer and provided her comfort.

But Grandma started to forget that she couldn’t walk well. She was diagnosed with fibromyalgia and spent the last years of her life in continuous pain. I was angry that after a life of service to God, she had to struggle so much. It seemed unfair that God would not reward her for a life well lived. One night, she got up to use the restroom, forgetting that she couldn’t walk without her walker and fell, breaking her hip.

The family came from all over the country to visit and see if she was okay and we learned that she would not be sent to recovery. She was too frail to have hip surgery, she developed pneumonia and even if she did recover, her memory wouldn’t allow her to do the necessary therapy to recover physically. Hospice was called in. It was time to say goodbye.

We sat by her hospital bed for days. Each day, the doctors would come in and tell us that “this would most likely be the day,” and then she would last the night. I went from praying that God would let her live to praying that he would take her fast so that she didn’t have to suffer. We sat and watched her breathe, and each time her breath would pause, so would ours until she took the next breath. We pushed the morphine button over and over again as we saw it start to lose its effect and she winced in pain. We sang hymns as a family and prayed over her. We told her that it was okay to go home and eventually, she did.

This time, I felt comfort in the fact that she was finally at peace after so many years of pain. I felt comfort in knowing that she was in heaven. But at the same time, small cracks were beginning to form in my faith. Why would God let her pain go on for so long? Why would someone who touched the lives of countless individuals through her years of faithful service have to endure such hardship over and over in her life? I also had a hard time reconciling the fact that one of my biggest cheerleaders, spiritual mentors and friends was so suddenly gone.

On November 24th, 2015, my daughter, Lily Grace, passed away. I delivered her the next day after 11 hours of labor. We went in for a routine check and the doctors couldn’t find her heartbeat. Much of that news being delivered was a blur, but I remember the ultrasound technician searching for what felt like an eternity while the doctors, nurses, Scott and I watched in silence. Finally, one doctor looked at me and simply said, “I’m so sorry.”

Over the next few hours, I was taken to labor and delivery and given a room, medicine was administered to start my labor and we waited. My parents came in and prayed with me before they left to babysit my other kids but I did not feel God in that moment. I labored all night and early into the morning. As Scott slept, I felt utterly alone other than the occasional nurse peeking in to check on me.

Lily was born just after 4am the next morning. She was dressed in a gown that the hospital had saved for such an occasion and we were able to spend two precious hours with her on this earth. We told her how much we loved her, took pictures of her, held her and cried tears that could never convey how we were feeling. Scott and I spoke words to one another that were too intimate to share with any other human being about life, love and faith; words that can only come from two people experiencing the same unimaginable loss.

We said goodbye to Lily two hours after saying hello. I watched her being gently carried out of my hospital room and there was no comfort. My rejection of the picture that I had always had of God being our loving father was immediate and intense. When I was discharged from the hospital carrying only a teddy bear and a box of Lily’s few tiny possessions that the hospital had given us to remember her by, I was utterly alone and could not be comforted.

For months I waded through deep grief. For those who have never experienced this type of loss, it feels like the world is moving too fast around you. You are in it, but not a part of it. I knew that I had to get up and take care of my other children, my home and my responsibilities, but all of it was done through a thick veil that was the new way I saw the world. I couldn’t move fast enough and everything I did felt like a heavy weight on my shoulders. I never knew that grief could cause physical pain in my chest until I lost Lily. I was trudging through life but not living.

I didn’t go back to church until our Christmas Eve service a month later, but that only brought more pain as I kept hearing about the “baby in the manger” and pictured my own baby and thought about how this Jesus who came to save us chose not to save my daughter. I was so angry with God. I spent hours crying alone at night when the rest of the family went to sleep. I couldn’t take a shower without crying. I couldn’t drive my car without crying. I couldn’t sing in church without crying. I couldn’t pray without crying. So, I cried and cried and cried.

I went through all of the stages of grief, begging God to reverse time and let Lily live. I yelled at Him in anger. I shared with him all of my sadness and I held on to Romans 8:26 that says, “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” I groaned into my pillow without the vocabulary to convey my sorrow and hoped that God heard my pain, but I did not feel His comfort.

I started to question my faith. If I truly believe in God and that He is all-powerful, I have to believe that He could have saved my child. If I believe that God is the loving father that I had always known him to be, how could He let Lily die? If He really does love her (and me) as much as the Bible says that He does, why take her and leave me with such unbelievable pain? If He only wants good for his children and wishes no harm upon them, maybe He isn’t strong enough to intercede. What if He doesn’t really exist at all and I will never see my daughter again?

I was scared by my own questioning and my loss of spiritual direction in life. I was floundering and couldn’t hear God’s voice at all in the midst of my deep mourning. I began to search for answers and came back to a story in the Bible that I had heard many times but that had never resonated with me before. In Mark, Chapter 9, a man comes to Jesus and asks him to heal his son who has been possessed by an evil spirit for years. The father begged, ““…if you can do anything, take pity on us and help us.” “If you can?” said Jesus. “Everything is possible for one who believes.” Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”” (Mark 9:22-24)

This prayer became the only words that I knew to pray. “Oh God, I believe, but you’ve got to help me overcome my unbelief.” And slowly and painfully, I met God again. I wasn’t less angry with Him, but I knew that He was listening and answering my prayer to know His presence again in my life and help me with my unbelief. I slowly reconnected with my faith and began to find more words to pray. They were all angry words but at least I knew that they were being heard.

I had a life-changing moment about 8 months into my struggle with God in the midst of my pain. I was doing some chores around the house alone (and crying, as I did every time that I was alone) and was praying and yelling at God. This was a pretty typical scenario at this point in my life. When I felt sad, it was God’s fault and I had grown accustomed to my prayer time consisting of phrases like, “You could have stopped this from happening. How could you do this if you love me? Why do we have to go through this intense pain?,” and always ended with, “Why didn’t you save her?”

On this particular day, I had fallen to the floor and sat there, crying my eyes out, and yelled, “Why didn’t you save her?” I heard God’s voice simply say, “I did.” It was an audible voice in the room with me and it was probably the only time in my life that I will ever hear God that plainly. I heard with my ears, not just my heart, “I did,” and all of my anger came crashing down around me. I was overwhelmed with sudden clarity of the whole gospel account of Jesus and his life, teaching, death and resurrection.

In that moment, I learned the crux of God’s plan for redemption and salvation. I had heard it so many times before, but it was different after the loss of my own flesh and blood. I sat there and cried as God gently reminded me through scripture that I have known my whole life that Jesus conquered death, hell and the grave. I had always been amazed by this but was looking at it through the lens of Jesus’ resurrection and how amazing it was that He is alive.

In this moment, God showed me that this conquering of death was not Jesus’ death, but my daughter’s. He did indeed already save her, and it was through Jesus’ death and resurrection that I will see her again. I also saw the resurrection account through the eyes of the father rather than the son for the first time. Losing my child was the most unimaginable pain that I had ever experienced. Jesus went through physical pain, but God knew how I felt because it happened to Him too, and He let it happen willingly so that I would be able to spend eternity with Lily.

So the question remains, in light of all of the pain of loss, how do I feel blessed to mourn? Because when we enter the deepest, ugliest, darkest parts of our own souls, when we hit bottom so hard that we wish for death, when we question God’s love or even His existence but have the courage to invite him into our pain with us, we understand more fully God’s intent for all of creation. Death is the worst pain that can ever happen to us, and Jesus conquered it, not only for Himself, but for all of us. Death is not the end of the story for any of us.

I was pondering these thoughts on grief and mourning in my heart again recently and realized that my great-grandmother, my grandmother, my other grandmother who is still living and I all have something in common that I never thought of before. We have all lost children to stillbirth. I have known about their losses my whole life, but hadn’t thought about them since my own since their generation didn’t speak about stillbirth openly. They are now reunited with their babies in heaven, something that I long so desperately for.

These women stand out in my mind as my spiritual leaders and mentors and for a split second I thought, “Why can’t I handle the loss of my child with grace and dignity and move on like they were able to.” Then I remembered that when we closed my great-grandmother’s casket and said goodbye, the last thing that I saw were her wrinkled, age spotted hands holding a tiny pillow with her baby’s name on it. She had lived for over 70 years with the pain of losing her child and had never gotten over the grief. She requested to be buried with that pillow because it was all that she had of him in this world.

So how does God comfort people who are in such extreme mourning? Before losing Lily, I thought of comfort as the knowledge that my great-grandmother didn’t suffer or the knowledge that my grandmother was no longer in pain. But this is not real comfort. This is consolation and self-soothing information. Had I not lost my daughter, I would never understand true comfort that only God can give. It has nothing to do with whether I feel sad or not. It has everything to do with the cross and the fact that if I never feel okay with the loss of my daughter in this life, the cross made this life only the beginning of the story.

A few people have asked me how I can continue to serve and love God after all that I have been through and after He let my child die. There is no easy answer. I didn’t just wake up one morning and decide that everything was fine. I have struggled with my faith so much through this experience of loss. But God has heard every word and has not left me in my grief. I have found only one explanation for allowing this loss to occur and it is found in the book of Luke.

Jesus’ words from Luke 17:20-21 say, “The coming of the kingdom of God is not something that can be observed, nor will people say, ‘Here it is,’ or ‘There it is,’ because the kingdom of God is in your midst.” I have wrestled with the reason for loss and attributed it to this fallen world and for a time told myself that I will just hang around because I have to and not be a part of a sinful world that would let things like children dying happen. But Jesus says that the kingdom is here now. There is still beauty in our fallen world, even if the only beauty we see is true comfort in deep pain.

As for why God would create a child only to let her die before being born, I find my answer in

1 Corinthians 13:12 that says about life after death, “For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.” Lily knows fully and is fully known by God. I am certain that she is living her true life and doing what God created her to do. God didn’t create her to let her die. He created her for a purpose that she is fulfilling already. I am the one who doesn’t yet know what my life in eternity is for.

This grief that makes everything feel like I am moving slowly and not seeing clearly is analogous to the way we live before resurrection. We have the opportunity to glimpse God and we “groan as in the pains of childbirth” (Romans 8:22) waiting for Him to make all things new.

Blessed are we who mourn this life because there is something so much better waiting for us. Comfort is a promise from God and it is guaranteed when we see Him face to face. Until that time, God is the same yesterday, today and forever no matter our circumstances.


My Son was Dead, and is Alive Again

I remember equating our first time meeting William to how God must feel the first time we ask Him to come into our lives and make us new. The joy mixed with the grief of loving someone so much that you would do anything for them was tangible and it left me in awe of God and His plan for us. The first eight months of William’s life was pretty smooth sailing. We thought it was a bit difficult, but we had no idea what was coming.

When Will was diagnosed with his seizure disorder, my personal grief and depression was intense to say the least. William basically disappeared. We were left with a baby we didn’t know and memories and photos of the old Will that, although they should have been happy, increased my grief all the more. I was conflicted with the loss of my son coupled with the fact that I still had this stranger to care for. His care was so much harder, and I found myself slipping further and further away into my grief. At the time, I was so angry with God that I refused to talk to Him. I turned away. How could He love us and let us go through this? How could I love Him after He didn’t save my son?

William has been seizure free for two glorious months. This week, he began to roll over again and hold his own head up. His beautiful smile lights up our day. William is back. Just as God taught me about salvation when William was born, today He is teaching me about faith. About 18 months ago, I prayed that God would increase my faith no matter what it took, but I had no idea what that meant. I must be difficult to teach, because God had to take me through the deepest, darkest year of my life in order for me to learn to trust Him. I don’t believe for one minute that God makes bad things happen to us, but I do see that through the bad, He brings understanding and makes things new.
I have been pondering the story of the Prodigal Son for the last few weeks, equating it to losing who William was for a while and now getting him back from the brink. But something felt off. We didn’t actually lose him. We felt like it for a while, but William was always there. He was just too sick to reveal himself. Why did God keep bringing this story to the front of my mind?

I realized today that this wayward son story was mine, not William’s. When I asked God to increase my faith no matter what it took, He knew that I needed radical change in my life. The only way to increase my faith was to shatter it and to rebuild it from the ground up. I have been the prodigal child for the last four months. My anger with God was enough to make me turn my back on Him. But He was in relentless pursuit. As I grew angrier, more people told me that they were praying. As I tried to skip church on Sundays, my kids asked to go and I couldn’t say no. As William got better when the doctors said that he wouldn’t, God’s healing was the only answer that made sense.

As Will continues to get better and stronger every day, we are blessed and delighted by seeing his “firsts.” The first time he smiled, the first time he rolled over, the first time his beautiful almond-shaped eyes followed me across the room. The funny thing is, he did all of these things months ago. But God has been gracious to give them to us again. And after being told that they are unattainable, the second first time is even more amazing than the first first time. Does that even make sense? Not to me, but to God, absolutely! Seeing impossible healing right in front of you, in the most precious person in your life makes disbelief in God a ridiculous notion. Through God giving us this amazing time of healing in Will’s life, especially after all that we have been through, He proves Himself over and over.

It took a year of this special needs adoption journey, with all of its ups and downs to find my faith. I thought that after asking God to increase my faith, He had instead destroyed it completely. But looking back, He was there all along. I was the one who had left. The hellish months of worry and grief are over for now, but we don’t know if they are gone for good. What I do know however, is that if they come again, God is in the midst of them. Not only that, He is there now, preparing a way for us to make it through them if we must.

I am unshakable in my faith. I’ve seen so much proof that nothing can convince me otherwise. God granted my naïve yet sincere request to be changed, just not in the way that I expected or would have chosen. Will turns one next week. I don’t even know how to put into words how I feel about that. I have spent the last year trying to save his life in any way that I can, but he ended up saving mine. Thank you God that you give us what we need and not what we think we need. Hallelujah and amen.

The Gift of Down Syndrome

I forgot that William has Down syndrome. So much has been going on with him medically lately that my focus has been on seizures, therapy and staring at William for long periods of time trying to decide if he has lost any type of functioning. Meds have made it hard for Will to sleep and they make him very cranky and hard to console.

Down syndrome seemed like such a large hurdle when we were in the waiting period of the adoption process. My husband and I prayed and cried and had long discussions about how Down syndrome would affect our family. Then, we were matched with a birth mom who so graciously asked us what we wanted to name our new baby so that she could put it on the birth certificate. Once we chose the name William, after my Great-Great Grandfather, we were finally expecting a person, not just a diagnosis. But I still feared that Will’s Down syndrome would be what I saw every time I looked at him.

He arrived 6 weeks early and very sick. The doctors started going through the long list of what could be wrong because of his diagnosis. They checked his heart repeatedly and it was okay. None of the issues that he had were because of his diagnosis. In fact, we were finally told that William’s leukemia blast cells would go away on their own because he has Down syndrome. Any “typically developing” children born with the same thing would have leukemia and begin chemo, etc… But for some reason, children with Down syndrome are labeled as having a “transient” form of the disease because it will go away on its own.

We brought William home from the hospital and began the task of starting therapy and coming up with a plan to “treat” Down syndrome. My initial thought was that we would make him overcome it. But we quickly realized that there wasn’t much to overcome. Will was this sweet, amazing, happy baby who just happened to be learning at his own pace rather than trying to keep up with everyone. He was teaching me patience and to rejoice in small victories. And, his floppy muscles made him even more amazing to cuddle with. We decided to throw “What to Expect the First Year” out the window and just enjoy life at his pace.

We began to meet some other amazing families who also have kids with different types of exceptional needs and found out that they are an incredibly strong, intelligent and passionate group of people who we feel so blessed to be a part of. We learned that we are part of a body of believers who will stick with us and lift us up in prayer no matter what, and we learned that God is so much more real and close to us in our present circumstances than we ever could have imagined pre-adoption.

Yesterday as we were meeting bedside with the head of Neurology at the hospital, he said that he was very happy with how quickly William is responding to his new anti-seizure meds. He looked at his fellow doctor and said, “I don’t know if you know this, but for some reason, kids with Down syndrome respond better to treatment for this type of seizure than the general population.”

I realized two things then and there. One, I forgot that Will has Down syndrome. The fear of always seeing it in his face was gone and not only that, I didn’t even remember that he had it. I don’t see it anymore and frankly, I’m not sure that it has even affected him much. I look back at the tears, prayers and questions of if we could handle it all and it just seems silly.

Two, I have been looking at special needs all wrong. Even as someone who advocates all the time for people with special needs, I always look at it in terms of, “Okay, they have been given these challenges to overcome, and although it’s not fair, I know that God has an amazing plan for them anyway.” What a crazy way to think! After how many times Down syndrome has literally saved my son’s life, I now realize that this type of disability is not something to always have to “overcome” or “treat.” It just is. It is a part of who we are.

I feel like God said to himself, “William is on his way to earth and he has great challenges ahead of him. But, I will give him the gift of Down syndrome, not only to save his life, but to help him remain happy through what he goes through and to help his parents find him in this vast world.” If we had been told that William was a baby on the way who would have cancer, kidney and liver disease, need multiple surgeries, have a seizure disorder and probably never be able to be on his own, we would have said “no” when asked if we wanted to adopt him.

But, we were interested in a baby with Down syndrome and that is all that the doctors knew, so we said yes. We found each other in this huge world. Everything else came later. I’m so glad that we didn’t know because he has been the biggest blessing in our lives and we could have missed it all. Do I wish he didn’t have all of his challenges? Absolutely. Do I wish he didn’t have Down syndrome? Not on your life! His extra chromosome is exactly what God wants for him and who are we to think that our ways are better than His? I no longer see Down syndrome as an obstacle to be overcome, but as a sweet and precious gift given by God to protect and to save, as well as to impact those around us in a profound way.

“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

The First Advent

I have been so frustrated this holiday season by the fact that I haven’t been at church for Advent services. Christmas is definitely my favorite time of the year and I love being able to sing all the Christmas songs, see the lights and anticipate spending Christmas day with my family. It is just a lot of fun. This year, one kid after another has been sick, and it just keeps happening on Sunday mornings and Wednesday nights during service times.

This past Wednesday our little William was really struggling to breathe from a bad cough. We made the decision to take him in to the Mott Children’s Hospital ER. The day before that, Tuesday, I saw that Will was making a strange movement with his arms and I took a short video of it on my phone. As we were doing a breathing treatment and being diagnosed with RSV at the ER, I happened to mention this video and showed it to the doctor. Then, Will began to do it again and the doctor saw it firsthand. She said that it probably wasn’t a big deal, but that she would show Neurology just in case.

To make a long story short, on Saturday, only three days later, I was sitting in a quarantine hospital room with Will as he recovered from RSV, deeply grieving the new diagnosis of West syndrome that had blindsided me. Our world had changed so quickly, I felt like my head was spinning. Words like catastrophic, debilitating and major loss that the doctors had told me kept racing through my brain. They said that William will probably stop progressing in his development at least until he outgrows his seizures (around age 3 to 5). He may lose milestones that he has already gained and the fact that it is all happening during the most crucial developmental stage of his life will leave him permanently disabled.

I turned on the TV to try and distract myself since I couldn’t leave the room and a commercial with a Christmas song came on. I had completely forgotten about Christmas! This is my favorite day of the year. How did I miss it completely? I began to feel sorry for myself. I was mad that I was stuck in isolation, mad that I was not home to see my other kids, mad that I had missed basically the entire Christmas season and mad that God would let yet another thing happen to my baby.

I was in the midst of intense, angry prayer, basically telling God off for what was wrong in my world. Will was not experiencing his first Advent season the way he should and neither was I. Why would God allow all of these things to keep happening to him?

Then a new thought hit me, or God hit me, or realization hit me, or maybe a combination of all three. I was observing Advent the same way that the world experienced the first Advent. I was in deep mourning and waiting, wondering if God was really going to reveal himself in the midst of our despair. This overwhelming sense of understanding flooded me and Advent became so much more real in my life. We experience Advent by grieving with one another the wrong in this world with the hope and anticipation that somehow God will make it all right.

I hope that people grieve with us. But, and this is a big BUT, I don’t want anyone grieving for us. Although I can already see that my little William is subtly different than a week ago before our world changed, he is still William. He is still the amazing gift that God gave us and he will still change this world for the better. He will just do it with more challenges. Grief and pity for him will not help him become the person that God wants him to be.

But please grieve with us during what’s left of this Advent season. Grieve that the world is not how God intended it to be. Grieve that people are hungry, hurting, lonely, sick and oppressed just as they were during the first Advent. Then, on Christmas day, celebrate with us too! Unlike the first Advent, we already know that Jesus did come, that He did die for us, that He did redeem us and that He is coming back again to finish what He started, making all things new.

I was wondering how I would possibly be able to celebrate Christmas this year with all of the new heavy burdens in my heart. Maybe that is the whole point of Advent on our side of the cross. I can celebrate because I know that the deep grief, mourning and waiting is only the first half of the story.

So on Christmas morning, I will choose to celebrate the gift of my son, the beautiful albeit complicated life that he has led so far, and the fact that doctors told us he may never make it to Christmas to begin with and here he is. All of these things are beautiful miracles in our lives that are made sweeter by the knowledge that my God gave his son for my son. Even though I don’t know what will happen to my son in the future, I know what happened to His son in the past. I choose to see this Christmas for what it is; the promise that no matter what lies ahead, Jesus came in the flesh as a baby as helpless as my own, suffered and died so that we all can live eternally. It all really happened, and it happened for each of us, especially my little William. Amen and Merry Christmas!

Laying it all on the Altar

We received discouraging news this week. William’s blood tests came back showing that the cancer we thought was gone may not be. We thought that we would spend his half birthday celebrating everything that he has come through, but we spent it at yet another day at the hospital. He will be scheduled for a liver and bone marrow biopsy in the next few weeks.

I decided to start a blog when Will was born in order to collect my own thoughts, to process what life is throwing my way lately and to hopefully help someone who may stumble upon it looking for answers in their own life. I’ve been able to write about huge triumphs in my family and specifically in Will’s little life. I hope that those are encouraging moments and give other people hope. I know that Will’s life has already been a huge testimony to God’s grace in many peoples’ lives.

So what do you say when those triumphant moments aren’t there? How do you give people hope when you just aren’t feeling it yourself?

I had a conversation with my dear friend who is a professor at a Christian university a couple of weeks ago. She was teaching her students the difference between a job and a vocation or calling. She wanted to use me as an example of following God’s lead in your life no matter where it takes you. I was flattered and frankly, still convinced that I am not the right person for that example since I know I fight God’s will on so many things. But since her talk with me, I have thought a lot about how we truly follow God no matter where it takes us and what it actually looks like to give Him every aspect of our lives.

Last night at church we asked my dad, our pastor, to pray over William and lay hands on him. I have been seeking God’s will in my life, but sometimes it is hard to know how to give Him everything. Pastors always say that we should bring it all to the altar, give it all to God and let Him have control no matter what. For the first time last night, I caught a glimpse of what that means. We literally stood up, walked to the front of the church and laid our baby, the most precious and important thing in our lives,  on the altar where he was prayed over by the pastor and the congregation.

This has been such a hard journey. The good parts feel great and the hard parts are completely overwhelming at times. But I am seeing how God uses both to reach others. I have had the privilege of starting a support group for families who have children with special needs. If we hadn’t gone through what we have been through, how would I be able to minister to them? I know how the bad stuff feels, and I need them as much as they need me when we support one another.

I have met new and dear friends who don’t yet have faith, but who know that I love them and the only reason that they came into my life is due to my own struggles in raising a child with medical needs. And I think most importantly, I wasn’t on a great path myself until William came along. It took God saying, “You cannot do this on your own” for me to learn to love more, grow in faith and reach out to others.

Sometimes I start to mope and feel sorry for myself. I ask God things like, “Will already has Down syndrome. Why does he have to go through the cancer, the kidney disease, the liver problems?” But then I remember that God doesn’t promise that life will be great all the time. I sure wish He did. But I do think that He uses the bad for good. I was telling a friend of mine about what we have been going through the last few weeks this morning and sharing some of my fears. And in the middle of it, she looked at me and said, “Wow. God is going to use your whole story to reach so many people.”

I don’t know what life will look like next year, next month or even next week. And frankly, sometimes I really wish that God would use someone else instead of my family and me. But I continue to praise Him, because this life isn’t all we have to look forward to. I keep waiting for things to get better. In reality, they might not get better this side of heaven. But if I am laying everything on the altar and giving God every part of my life, not just the easy parts, I know that He will take care of me no matter what I walk through.

I have been thinking of the song “Praise You in This Storm” for the last few days. It helped me through all three of our three miscarriages and I will just end this post with it. It sums up how I have been feeling.

I will praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I’ve cried

You hold in Your hand

You’ve never left my side

And though my heart is torn

I will praise You in this storm

This Side of Heaven: Special Needs and the Church

Life with special needs is unfair.

For so long now (and I’m talking centuries), people with special needs have been marginalized, left out, mistreated, abused and neglected more than any other population of people. On top of unfair stereotypes, they face a sometimes mountainous set of physical or cognitive challenges, or a combination of the two.  So the questions for believers have to follow… “Why does God allow disability to happen in the first place?” “Why would He allow people to suffer so much?” “Why give someone an unfair amount of challenges?” “Why put families through it all?”

These were questions that I never really considered other than to tell myself that the simple answer is, “Because this world is imperfect and when we get to heaven, it will all be better.” But, there is a new, continuous, unrelenting thought going through my brain now that we have our own child with special needs. I look at him every day, this amazing miracle that God has placed in my life, someone that I know I don’t deserve but have been blessed to be given, and I think over and over, “What is going to happen to this beautiful person when I am gone?”

When Will was born, things were very touch and go. No one seemed to want to say it out loud, but Will’s survival was in question. For weeks and then months, my only prayer was, “Oh God, just let him live.” I still have that prayer going through my mind every time we see his specialists. But now, the fear that I could outlive my child is juxtaposed with the fear that my child may outlive me. What a strange set of worries. All I want is for him to be okay, but then if he is, what lies ahead for us all, especially for him when I can no longer take care of him?

As I’ve been pondering all of this in my heart lately, in addition to working with many amazing adults with special needs who have parents asking the hard questions, I wonder if we as a society have the whole thing backward. Instead of asking God why He would allow special needs to “happen” to people, maybe we should be recognizing that people with special needs are made in the image of God just as we are, and asking what our response should be as Christians?

I’ve often thought of the story of Adam and Eve in the garden since I started working with individuals with various types of special needs. Not the story of their creation, but the one about their first sins. When they ate of the fruit of the knowledge of good and evil, did it change their intellect in such a way that they were smarter but also sinful? What if the individuals that we marginalize are glimpses of the people we were meant to be before the fall? Our ever-increasing intelligence as a human race succeeds to further our ability to outdo, to look better than, to be richer than, to be stronger than and ultimately, to kill more efficiently than those around us. What if God’s original intent was that we didn’t have so much knowledge but had a heart more like His?

When I go to work and have the opportunity to interact with my friends with special needs, I don’t see in them the need to compete, to be better than, or to outdo one another. I see people who love one another simply for who they are. And I am so humbled that they love me with all of the flaws that I carry.

But what does all of this mean for the church? It means that not only are we to look at people with special needs as equals, but we need to understand that there is a lot to be learned from them about faith in God and about how we are to love one another. Jesus says that we have to become like little children to understand and gain the kingdom of heaven. Some of my friends can do this much better than I can. Above all else, we have to stop looking at special needs as something to be pitied and start looking at how we can incorporate anyone with differences into our community. My son was made in the image of God, extra chromosome and all! What a beautiful thought. And I see Jesus’ love in him every day. We have to get over the fear of interacting with people who are different than us and realize that they are just as beautiful, gifted and loving as we are if we look at them through God’s eyes.

So in response to the above questions, as believers we should consider that God knows what he is doing. Instead of asking, “Why would God give someone special needs?” we should as, “Why hasn’t the church been reaching out to people with special needs when God created them in His image?” Instead of, “Why would God allow people to suffer so much?” We should be asking, “Why has humanity decided that a group of people should suffer just because they are different?” Rather than wondering why families have to go through all of the “What if’s?” we should be asking, “Why isn’t the church bearing the burdens of parents who love their kids with special needs more than anything and are scared for their future?”

My oldest son, Matthew (who is only 6), and I were having a conversation this evening over dinner about visiting his Great Grandma and Grandpa this weekend. He mentioned that Great Grandma can’t remember things anymore and I told him that when we are little, we are taken care of by our parents and then when we are old, we are taken care of by our children and that is what our family is doing with Great Grandma. My dear little Matthew, who happens to have the most beautiful and loving heart for Jesus said, “William may not be able to live by himself. Down syndrome makes it hard for you to learn sometimes. But he will come and live with me. I’m the biggest and I love him.” Now, I know that he is only 6 and doesn’t fully comprehend what he is saying, but I have to say that that little boy changed my life this evening.

What if we all looked at special needs in terms that simply? What if the church said, “You only have one child and no other children to take care of him/her when you are gone. Since the church truly is a family, you don’t need to worry. We will be that family and love him/her as passionately as if he/she was one of our own.” Lives would be changed my friends.

Life with special needs is unfair. William’s kidney disease is unfair. William’s blood disorder is unfair. His increased risk of cancer is unfair. The fact that if he lives long enough, he has a 100% chance of developing Alzheimer’s is unfair. Society’s view of him is most certainly unfair. But, we serve a God who knew what He was doing when He made my little William. Instead of looking forward to the day when Will gets to heaven and all of his “problems” are taken care of, I look forward to getting to heaven and seeing that his heart, even with its holes, was made perfectly ahead of the rest of us, and the new bodies that we are all given in heaven look more like his does here on earth.

Shh… it’s a secret

When my husband and I decided to adopt a baby with Down syndrome, we didn’t tell a lot of people. I wasn’t sure about the reaction that we would get and didn’t want to have to explain our personal reasons to everyone that we talked to about our adoption plans. Frankly, I was afraid that people would try to talk me out of it. But, it turns out that when we finally shared our intentions, people were excited for us. My husband’s co-workers were even hoping that we would decide to do it after he brought the possibility to them and asked them to be praying as we made the decision. The one thing that people kept saying was, “You will be so happy. They are so sweet and happy all the time!”

I tried to not listen to that too much. I don’t like stereotypes and figured that this one could not be true. After all, no one is happy all the time. It would be crazy to expect that. I was right. A tired and hungry baby is not happy no matter what his chromosomal make-up is! But I was also wrong about a lot of things. My original plan was that we would treat our baby with Down syndrome the same as our other children and he would grow up the same way. Sure, he may take a longer time to learn things, but really, what will be that different?

Will chose to make his grand entrance into this world with a whole host of problems having nothing to do with Down syndrome and some that were a result of it. His medical needs were much more than we bargained for and I quickly realized that no amount of love was going to just “get him through” things. We have a lot of work on our hands. With trips to the hospital an hour away, sometimes upward of three times per week, plus therapy, blood work, oh yeah and three other kids in the house, life went a bit nuts on us rather quickly.

I can’t say that adoption has been a 100% blessing in every area of our life, just like I can’t say that Will is happy all the time. But here’s the thing, our lives have become exponentially better with Will in our family. I mean that very seriously, not in a sweet “new baby high” kind of way. The new baby high wore off fast for this mama. It is hard to feel a high after weeks of no sleep and while running from floor to floor at the children’s hospital because you have been there so many times you can’t remember which specialist you are supposed to see but you are definitely late for an appointment somewhere.

I’m talking about a change in us as a family, as individuals and as believers in Christ. Through all of Will’s medical needs, some of which are ongoing, God is teaching me a peace that I would never have understood in any other circumstance. I am learning a level of trust in Him that I would have never thought possible and a perfect dependence on Him and His will for my life. As a family, we pray together for our health, for God’s protection and for William. Our other kids are learning right away that God is the provider of all that we need.

Some other unexpected joys that have come from Will joining our family were a surprise to me as well. One being that other parents of children with Down syndrome know the secret as well. It is a beautiful thing to meet another family with Down syndrome in public and smile at them, knowing that their smiles are saying, “Yes! We get it! Look how amazing our kids are!” I have made some great friends who I would never have known if it wasn’t for the fact that our families have Down syndrome in common.

The latest statistic just came out on abortion of babies with Down syndrome in the US. The number is up to 97%. This means that only 3% of babies diagnosed with Down syndrome prenatally are given the chance at life. I can’t help but think of the passage in the Bible that says,

For you created my inmost being;
    you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

                                                                                  Psalm 139:13-16

When I was made in the secret place… I wonder how this world would look if we weren’t given the opportunity to gaze into the secret place and see what God is waiting to reveal to us. What if we couldn’t see Down syndrome before the baby was born? Maybe more hopeful waiting adoptive families would have a chance to meet the little one meant just for them. Maybe birth families who are so scared of a diagnosis would get a chance to be in on my secret. But since we do have the ability to spy on the secret place, let me tell you the secret…

Down syndrome is such a blessing! Even with all of the fears, doubts and troubles that we experience, I would not take away Will’s extra chromosome for the world. It is not something wrong with him, it is how he was knit together and he is fearfully and wonderfully made! I know now that life will probably not be the same for him as it is for my other kids no matter how much I love him or how hard I work at it. But you know what? I am no longer afraid of that because when I look into his beautiful almond-shaped eyes I see the face of a child created in the image of God and that fact alone makes him worth just as much as anyone else.

I wish so much that I had an opportunity to tell pregnant moms who have just been given a Down syndrome diagnosis that it will be okay. It is scary, it is hard, you will have moments where you don’t know if you are a strong enough person for the job, but it is so worth it. All of us who are lucky enough to have a family member with Down syndrome already know the truly important secret. Not the one about your child’s diagnosis, but the one about how much better your life will be once that child is a part of it. Not the one that says, “God gives the most challenges to the strongest people,” but the one declaring, “Step out in faith that this is meant to be and God will take your fear and make you stronger than you could ever imagine.” The secret that takes our sorrows in knowing that our child may not live up to society’s standard of success and replaces them with a person who loves without hesitation, lives a life of authenticity and teaches us what success in life really means.

Encourage families with a new diagnosis. Pray for these unborn little ones. And most importantly, don’t let it remain a secret.