We’re Here Again, Where Are You?

I hate the hospital. I’m not sure that hate is a strong enough word. I detest, loathe, despise and abhor the hospital. There are many reasons for this, but I think that the most striking reason is that, quite honestly, I have a hard time feeling God’s presence here. I feel alone. Today we sit in the hospital once again. This stay will be a long one, possibly the longest that we have experienced so far. I am struggling.

The hospital means sickness. It means worry and lack of sleep. It means germs and death. It means that I have to choose between my children. Will I be with the one here or will I go be with my other children who also need me? There is no good answer. But for me, one of the hardest things that it means is the unending hours of silence. Not quiet time that I could spend alone with God or even relaxing to read a book and have some “me” time. No, this silence eats away at me, seeps into my pores and makes me battle my faith and question why over and over. This silence puts me in a dark place. And the hard thing about it is that I know it is coming each time we are admitted, but there doesn’t seem to be anything that I can do about it. The hospital is my personal spiritual war zone.

I have been told over and over, “God doesn’t ever give us more than we can handle.” People who tell me this have ranged from close family and friends to well-meaning nurses and therapists. I understand that they are trying to show support, trying to give comfort in hard situations, but I disagree with this statement entirely. I think that God absolutely gives us more than we can handle and by doing so, teaches us ultimate faith in Him. I have learned through my little William that I am not equipped at all to deal with most of what faces us, but God is and He can carry me through whatever we are dealing with.

So then the hospital struggle becomes harder. How do I know that God is carrying me when I don’t feel His presence? I feel lost. The sounds of the ventilator breathing for my son, keeping him alive, mixed with the intermittent beeping of heart rate monitors, IVs, blood pressure cuffs and more become a cacophony of sound smashing through my ears. And in the silent spaces between each sound, Satan starts to creep in. Questions swirl around in my brain. Should we have adopted William without realizing what it would do to our other kids? How will we make it through this hospital stay? What will his next seizure take away from him? When he wakes up from these weeks of drug-induced coma, will he still be ‘him?’ Will he die? Where is God? Has he abandoned us here? Why won’t He answer all of these questions?

The only question in the midst of the thoughts swirling around in my mind that truly needs to be answered in these dark times is, “What do I do with my faith when God remains silent in the midst of my deepest trials?” I don’t always know the answer. But I believe that these moments are what it means to be a Christ-follower based on faith and understanding of grace rather than because of the emotions or feelings I have during the highs. It’s how I respond during the lows that shapes my relationship with God and keeps me standing. Firm belief that God is there even when I can’t feel Him means that my relationship with Him is deep enough to weather these terrible storms.

I don’t like to quote people often because frankly, I don’t think that many of the quotes written about going through trials were actually written by people in the middle of their darkest times. But, I have found comfort often in some of the writings of the great theologians of our time. I was reading from C.S. Lewis and Oswald Chambers while I was praying and studying hospital bedside last night, and I came across these quotes…

“I know now, Lord, why you utter no answer. You are yourself the answer. Before your face, questions die away. What other answer would suffice?”     C. S. Lewis

“Faith is deliberate confidence in the character of God whose ways you might not understand at the time.”                                                             Oswald Chambers

This was how God spoke to me in the hospital last night, through the noise of the machines and through the awful silence. Sometimes I won’t feel Him next to me. But my conscious and deliberate choice to believe that He is there anyway is the only answer that I need to silence all of the questions. I will sit in peace in the hospital today, not because I can feel God here in the moment, but because He has never failed me yet and I make the choice to believe that He won’t start now.

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Request for Prayer

Thank you all for walking our journey with us. I can’t tell you all what it means to me to know that you are thinking of us. This is not a typical post, but I am instead asking for prayers. William is on life support at the children’s hospital by our home. He got the flu last week and kept getting worse and worse. We are asking that people pray.

We are making a huge map for William of all the places that prayers for him are coming from. If you have been praying, or if you are starting now, could you leave a comment letting us know what city and state or country you are in? It would mean so much to us. If it is easier, you can follow our story on facebook. Send me a personal message and I will tell you our facebook page name. Please share with anyone and everyone you know! They can follow my blog for updates. Thank you so much!

The Last Enemy To Be Defeated…

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William has been sick for the last couple of weeks, very sick. We spent three days in the hospital getting breathing treatments for the flu, made it home for couple of days, and then ended up here in the children’s hospital on a ventilator. William started to seize and had to be given meds that would stop the seizures but that would also make it impossible for his already weak lungs to work on their own. We helplessly watched them give the meds, held our breath as his breathing stopped and then watched the machine start to support his little body.

We shared with anyone who would listen to please pray for the life of our son and were overwhelmed by the number of people who prayed for us and supported our family. Will is doing much better already, although it will be a slow process getting him to breathe on his own. Then we will start the task of seeing how much damage this last seizure did and start to come up with a game plan to prevent more in the future.

As William stabilizes and begins to slowly recover, I find myself in a very strange position. He sleeps all day as meds keep him sedated. I sit and watch him breathe. Exciting, I know. But with four children six and under, quiet time is a surprising thing for my mind and body to accept and adjust to. With all of this time, I am able to reflect on how much life had changed since Will entered the picture. I am also able to lift my eyes from him to his door and view the juxtaposition of our silence and stillness to the flurry of activity coming from the doctors and nurses just outside. I can’t hear them, but I know what a flashing light and a group of people in scrubs running means. And it happens often here in the PICU.

We are sitting in a room far away from home surrounded by life and death. Doctors and nurses make fighting death their life’s work. Parents pray unceasing for their children to live, to be spared from whatever they are individually going through. But the crazy thing about it all is that we will lose. Not now, maybe not next time or the time after that, but death is the only certainty in all of our lives. Some day William will die and I will continue to fight to make sure that it doesn’t happen until I am gone myself.

I hate it when people tell me, “God only gives the biggest challenges to the strongest people” because every time we face death, strong is the last thing that we are. We are weak, so weak that we must make the conscious choice to cling to our savior or drown in the overwhelming inevitability facing us. We are tired, we are overwhelmed, we are helpless on our own. We are not strong.

But we are brave. And we have a different understanding of what it means to live a life of intense faith. Not faith that things will get better or faith in our own ability to cope, but faith to trust in the One who defeated death, hell and the grave. We are brave because we stand alongside a God who HAS conquered death. We are on the front lines of a battle that we will not win but His strength is made perfect in our weakness and He has already won. We have faith that can move mountains.

So, to family and friends who love me and want to encourage me, know that I am not the strongest person you know. I am tired, I am weak, I am worn. But also know that the combination of the amount of faith I have combined with my weakness is a force to be reckoned with and my God is doing powerful things through what little I have to offer.

To all of the other families with special needs, keep the faith. I see the exhaustion in your eyes as we pass in the hospital corridor and I hold my breath with you as the alarms go off on the machines keeping your kids alive. It hurts and it makes us weak. But I also see your faith being lived out and the miracles that happen in your wake. We are unstoppable warriors in our weakness.

To anyone who faces death often, or to anyone facing the loss of a loved one, don’t try to be strong enough. We can’t win on our own. But we don’t have to. The hope that we have is real. Life would be so unfair if death was the end of the story. But praise the Lord, it is not! I will fight until my dying breath for William and for all of my kids and they will still die someday. But on the other side of death is forever, and I have a feeling that I won’t be tired, weak or worn there.

Words From My Son’s Other Mother

When my husband Scott and I decided to adopt a baby with Down syndrome, I played and replayed scenarios in my mind. They ranged from what it would be like the first time we met our baby to what I would say should anyone dare to question our decision or say something less than encouraging about my family. I kept thinking about all the joy, the excitement, the passion that I would have for this new calling in life. But somehow in the midst of it all, I never thought about the family that our baby would be coming from in order to get to us.

Suddenly my adoption daydreaming became a harsh reality when we found out that a birth mom had chosen our family’s profile and was interested in speaking with me further. I was given her email address and simply told to write to her and introduce myself. No scenario in my mind, or any real experience in my past for that matter, could prepare me for this moment. What do you say to the person who might choose you to raise and love her child? How do you make contact without sounding desperate? Do you share personal stories or try to remain neutral?

I don’t even remember what I first said to her, but I managed to make contact. Then things got even harder. I was prepared to feel great about adoption because I would be “saving” a child from a bad situation. But as I got to know this stranger through her words on my computer screen, I realized that I wasn’t saving anyone. This was an amazing woman who didn’t need me to be the hero. She was already being the hero by choosing what was best for her baby and not what was easiest for herself. I tried to be as honest as possible as we emailed back and forth, asking and answering questions and trying to be as polite as possible. Then I got the email.

Yes, we have chosen you and Scott, so please proceed with the social worker…

This small sentence that has forever changed my life, given me the gift of my son and inextricably linked my life to the life of this stranger. We set up a time to meet in person.

Scott and I walked into our adoption agency as my mental scenarios began again. “Oh, maybe she’ll say this… then I’ll say this…” “The social worker will probably usher us into a private room where we will see her…”  When we walked in the doors, there she was. Just sitting in the waiting room reading a magazine. She looked at me and smiled and said, “Bekah?” and I shook my head yes and we hugged. I felt my son against my belly through hers. And suddenly my adoption harsh reality moved into the realm of adoption pain. She was beautiful, had her life together, loved the Lord like we did and had chosen us. I felt guilty that this wonderful thing in our life was the cause of so much agony for someone else, someone real, standing and hugging me.

Our little William made his entrance into the world too early and very sick. Although he did have Down syndrome, none of his medical needs were centered around it. His kidneys and liver weren’t working properly. He needed a catheter, surgery, oxygen to stay alive. He had leukemia cells floating through his little body. We were talked through comfort care in the event that he wasn’t going to make it. In the midst of the first 24 hours with our sick baby, his mom called our room, still recovering herself, and asked me if she could come and see him. More pain… She shouldn’t have to ask. I don’t have the right to be taking this person from her. We said yes.

She came in a few hours later, stood with us over his bed and watched him breathe. After a while, she looked up at me and said,

He was a fighter and I could feel him kicking so strongly inside of me. He will survive this…

More simple words that rocked my world. And again, from this person who I barely knew but who I could tell was also a fighter and stronger than anyone I’ve ever met. How was God using this person that was dealing with so much herself as my source of strength?

As the months went by and William got better and better, we sent photos to his birth mom. We even met a couple of times so that she could see him. We eventually got to know each other a little better through emails, texts and then Facebook. Then, when Will hit 7 months old, our world was rocked again. He contracted RSV and while he was in the hospital started having seizures. He was diagnosed with a rare seizure disorder that would slowly take away the abilities that we had worked so hard on in therapy. We watched as he stopped rolling over, stopped smiling, stopped moving his legs and then stopped holding up his own head. We went home to face our new “normal” only to rush back to the hospital a week later and find out that Will had a hole in his bladder and would need to use a catheter full-time.

I was heading home from the second hospital stay in 3 weeks and was updating William’s birth mom via text. I always try to sound positive and put together even now because I want her to feel like she made the right choice in giving her son to us. But she sent a text and asked how I was holding up. I answered with, “I’m so discouraged.” The response I got back, from the mother of my child, was…

It’s ok. God loves us all and He has chosen you to take care of William. He will not let you down…

… and there are no words for that emotion. I had gone from adoption being a daydream, to a harsh reality, to so much pain. Now what was it? Grace? Acceptance? Insanity? Peace…

Words from this amazing stranger. A mom like me who I love so, so much although I don’t really know her well. Small words that change the course of my life, give me hope, shape my future and strengthen me to take care of her baby, my baby, our baby.

Why Special Needs Adoption?

Our adoption finalization date has been scheduled! It is in 30 days and 12 minutes, but who’s counting, right? We began this journey in November of 2012 with me telling my husband Scott that I think we should adopt. He definitely looked at me like I was crazy. Our youngest son was 1 and we were completely broke. But I am a persistent person and once the idea had stuck, there was no going back. We told our family of our plans and I think they did everything in their power to not freak out in front of us.

In January of 2013 we attended an introductory course at our adoption agency and from there, went to classes, had background checks and fingerprinting, did a home visit, filled out an insane amount of paperwork, let social workers pry into every personal part of our lives, were matched with kids that didn’t work out, had a surprise pregnancy and subsequent miscarriage, did more fingerprinting and background checks, updated our home study, registered with the National Down Syndrome Adoption Network, got a call about a potential match, met the birth mom and suddenly had a baby. It went from feeling like forever to feeling very sudden.

I had all of these grand ideas of what I thought adoption was. “Won’t we be doing a wonderful thing for someone who really needs it?” “We can complete our family and everything will be perfect.” “We will all feel so good about it.” “We will be saving a child who can’t make it without us.” Going to our first class gave us a glimpse of how silly some of these thoughts were. I hadn’t thought at all about the grief and pain involved in the whole process of adoption.

As we went through the paperwork, we started off by filling out forms about what type of child we would take (I know, sounds crazy, right?). We went through an agency that would match us with a birth mom or let us adopt through foster care and we were mainly looking at foster care since it was virtually free. On their questionnaire, we were asked if we would take in children with mental illness, sexual abuse, autism, cancer, AIDS, behavioral issues, Down syndrome, moms who drank or did drugs during pregnancy, and the list went on and on….  Basically, we started out by looking for the “perfect” child by saying no to almost everything on their questionnaire. And surprise, we weren’t matched for months.

One night, I was up late goofing off (at a time in my life when both staying up and doing it just for fun were possible) and I started watching youtube clips. I don’t know what I was searching, but I found a short video of a couple meeting their adopted daughter for the first time in the hospital and she happened to have Down syndrome. I immediately though, “Wow, that is so cool of them. I could never do that.” But for some reason, for about two weeks after that, I couldn’t get that video out of my head. I kept watching it. Then I began to search “Down syndrome adoption” on the internet.

God was slowly changing my heart in a very unexpected way. My job involves working with people who have special needs, but I would only take the “perfect” child as my own? It seemed wrong. But what would our family look like with special needs? Would it be fair to the other kids? Would it be fair to my husband? Could I do it? I found the National Down Syndrome Adoption Network and filled out a form… then I told Scott. In retrospect, maybe that should have been an earlier step in the process.

When we were matched with Will’s birth mom through NDSAN, I was so excited until they gave me her email address and simply said, “Okay, give her a call and you two can talk about it all from here.” What do you say to someone going through so much? How do you make them think that you are the right family for their baby without sounding desperate? What the heck is the first sentence of your email going to say? All of these things were so out of the realm of my experience that it felt crazy. I sent her an email introducing myself and things moved quickly from there.

A couple of weeks after speaking with her for the first time, she sent us an email saying that she had chosen us to be her baby’s parents. We were at church and I was so excited and showed it to Scott and my friends. But that night, once the kids were in bed, Scott and I sat down and had a heart to heart that included many tears and prayers. It started with Scott saying, “I just don’t want a baby with Down syndrome” and ended with us deciding to sleep and pray on it. I hadn’t given Scott the time he needed to process it all and God needed time to work on his heart and mine.

We had to decide quickly so as not to string this birth mom along and so Scott took it to work (he works at a church) and asked them to pray for our decision. That afternoon, he ran into someone else at the church who has a daughter with Down syndrome and just bluntly asked her what she thought. He never told me exactly what she said to him that day, but he came home and said, “Okay, let’s do it.”

We went to an ultrasound and got to see our baby for the first time. It was just as incredible as when we saw our bio kids for the first time. We named him and decorated his room. I got all of the baby clothes washed. I was so excited to meet this little person in only 7 weeks until our social worker called. She gave is very few details but said that his birth mom had called and that she had a bad ultrasound that showed kidney and liver damage and the possibility of cancer. The social worker then simply said, you need to decide in the next 4 hours if you want this baby or if you want to pass and wait for a healthier one. No more explanation than that.

Scott’s heart had already been changed but mine needed work. When he said yes to this baby, he already knew that it meant yes to everything that came with him. I had said yes to Down syndrome but not the complete unknown. As we were talking and crying and praying again, Scott said, “We’ve already said yes to this baby. If you were pregnant with him, this wouldn’t even be a question that needed to be answered.” That was the end of it and we went forward with the adoption.

I’ve previously posted our story of meeting William for the first time, so I will spare you the details other than to say that even though Will was born with the complications that they warned us about, he has survived and thrived. As we have gotten through the last few months, with new and devastating diagnoses cropping up and a whole host of medical trips, medicine regimens, seizures, hearing loss, catheter training, family sign language time and on and on, I can’t help but think that if I had known all of this was coming I would have said no instead of yes. And I am SO glad that I didn’t know because knowing all of it but also knowing William and who he is makes it easy to see that yes was the right answer all along.

A few people have asked in the last couple of months if we are sure that he is the one and some have even hinted again that maybe we should choose a healthier baby and we don’t “have to go through this.” But I look back at our initial yes as being the yes that covers everything that we are going through now. When someone asks me why I would adopt a baby with so many special needs, I don’t have a good answer other than to say that God directed every step of the process and we just kept trying to say yes to what He asked of us.

I hate that Will is going through these seizures. I hate it when we think we are making progress and then he takes another major step backward. I hate it that I can’t just change his stinking diaper without having to catheterize him. I hate the meds. I hate the long trips to the Children’s Hospital. I hate that we are now the family that everyone says, “Not that it’s as bad as what you are going through…” before they talk about problems with their own kids. I hate it that I don’t know what life is going to look like next year, next month, next week or even tomorrow. And I hate it the most that William can’t smile or laugh due to the meds that he is on. But no matter how much I hate all of, I love him so much more.

I think that sums up adoption. Adoption is pain. It is grieving. It is agony at times. And because of these things, not in spite of, it is wonderful. No one can go through as much of the “bad” that we have experienced and still say yes unless they have also learned what fearless, gut-wrenching, unconditional love really is.  That is the gift that God gave us through this process. We are a family who knows how to love without boundaries, and I wouldn’t trade that for anything.

When the Bible says that we are adopted children of God, we should take it very seriously. God sees all of the terrible things that I have done, all of the bad thoughts that I sometimes have, all of the pain, the hurt, the agony, He still says yes when I ask for His forgiveness. And that yes covers everything. The past. The present. The future. I don’t know what tomorrow will bring, but I do know that God is already in it waiting to walk through it with me.

So, if you ask me why we chose to adopt, and especially to adopt a child with special needs, my only really truthful answer is, “We didn’t. God did and we followed Him through it.” Every step of the way so far has hurt and I have a feeling that future steps won’t be pain-free either, but to love someone so much that it hurts is the best kind of pain that we can experience. And I would rather feel it deeply than say no and miss out on so much of the painfully beautiful things that God has for me.

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!