Mommy, Why did God make me this way?

It is the question that no parent is prepared to answer, "Mommy, why did God make me this way?" This has been the year of frustration and the year of "Why?" questions. "Why was I the one born in the family with medical problems? Why do I have to be in the hospital? Why did God choose me?" Why? Why? Why? To him, life sometimes is simply not fair. In the moment the questions were asked, the only consistent response I offered was far from profound: "I don't know." Flashbacks of my college Religion Professor, Dr. Hart, saying to me, "It is better to be honest and say, 'I don't know' than to answer with an insincere answer." Though her wisdom was present in my mind as I told my son that I did not know the answer to his questions, I still felt like I was cheating him by not having some eloquent and perfect response.

There is an overwhelming feeling of despair and grief as a parent when you cannot cure your child and provide comfort and answers to complex questions. Yes, in that questioning moment, I could have provided a fluff response and told my son that God made him perfect just as he wanted and designed. However, I thought of all the times I have received comments such as, "God doesn't give you more than you can handle," or "Things happen for a reason," etc. Though well intended words, they often hurt. They feel like the easy response in a hard situation.

What I said to our son is, "Jacob, I don't have an answer for you. Life has not been very easy for you. I do know without a doubt that God loves you. I also get confused like you when I think of how big and mighty God is and why people are born sick, why people die too soon, and why children like you have to suffer so often. Your questions are a mystery to me, too. If I could take your problem from you, have all of your surgeries and treatments, and give you my organs that you need, I would in a flash, but I can't."

With tears in both of our eyes, Jacob looked at me eye to eye, holding my hand and said, "Mommy, I would not want you to do that. You would then have to suffer through surgeries. I can't let you do that. You're my mom and that would not be fair to you either."

Children are often so much more fervent than adults. They understand compassion and humility so well. Sometimes they express it through their actions and sometimes they express it through their words like my son.

Sometimes I weep. I weep for the grace filled moments my son and I have together - for the pain he has to bear - for the complex questions there are no answers to. I weep for the life we have been given that is beautiful and hard. Most of all I weep with gratitude that God chose him to be my son. I am so lucky to have the family I do - my two loving sons and husband braving this journey together as a team.

I know we are not alone. I know many ask the same WHY questions. For now, we are going to stick with the, "I don't know" answer to the Why questions. We may never understand why there is suffering when God is so omnipotent. And so for now, we will stay steadfast in our love for one another because unconditional love requires no questioning.

Our Military: Always Defending, Always On Watch (Even at the airport concourse)!

Time has passed but the memory of a journey home is still fresh. We flew home from our son's surgery one Sunday evening. He was fresh out of the PICU and had not yet gained the ability to walk. I had contacted the airline weeks before our flight to ensure the flight was direct, our family could sit together, to explain our situation, and above all to request ADA accommodations. Our son had traveled away from home to have a specialized spinal cord surgery. We are not rookies at this process anymore and we have learned how to prepare ourselves for the journey to and from the hospital. It's often Roulette with the airlines though as to whether or not they are going to accommodate passengers with special needs. We must take our chances though and always go to the airport with a positive attitude.

This particular day though, things started smoothly. When we arrived at the airport, we were greeted with a wheelchair and a very nice gentleman helped us through the airport and through security. Our son never had to get out of the wheelchair throughout the entire process. Everything was moving along perfectly. Our son was fatigued and exhausted. The surgery had taken a toll on his body. He could stand up with support but he had not yet learned to walk. It was best for him to stay in the wheelchair to minimize any risk of injury. He still had hospital bracelets on and we had extensive medical documentation should we need it for any questioning in the airport.

We finally made it to Concourse B, Gate 6. We were thankful to be able to sit in the waiting area and wait to board the airlines. We felt like we had made it through the toughest part of our journey and ultimately won the airline lottery of life. However, when the attendant opened the ticket counter, things quickly went south. The attendant called us up to the counter to inform us that we would no longer be sitting together on the plane as a family. I said to her, "Mam, our son needs one of his parents to sit with him to help him get in and out of his seat, he's in quite a bit of discomfort. We have ADA accommodations." The attendant looked at me and said, "You are not sitting together, too bad, sit down." My son overheard the attendant and started to cry. We were all in disbelief.  My husband took our son away to try to redirect him from the rudeness of the attendant. We did not know what we would do. Our son could not navigate the flight home by himself.  In the meantime, a man sitting in the waiting area dressed in a retired Navy veteran sweatshirt and a retired Navy veteran logo hat stood up after overhearing the conversation to talk with the attendant to try to help us.

I was somewhat in a fog trying to sort through my emotion and grasp onto ration to create an action plan. I also could not believe the kindness of this man who was trying to help us. We were complete strangers to him. To my shock again, the attendant in her desensitized robotic voice told him that the flight was full, she could not accommodate us and to sit down.

I picked up my phone to call the airline to contact a representative for help. It was all I could think to do at the moment in a very crowded airport. I had not noticed that the Navy veteran had left the gate. As I sat on hold with the airline, he returned within moments with a supervisor from the airline and proceeded to handle the situation for me. He explained to the supervisor what had happened. I was stunned. A few minutes later, my husband and son returned. The supervisor was wonderful and removed the attendant from her post. The great irony of the story is the supervisor told my son she knew his surgeon because she worked part time at the hospital where he had his surgery as a nurse. Divine intervention, yes, please! Because that is my best explanation as to what happened at that very moment.

I have had time, lots of time to think about the situation. My son has had to digest the situation too. He has unfortunately learned that there are simply mean people in the world. However, with time, a great teachable moment can rise when the "icky" emotions fade. The great teacher and lesson is that our heroes who fight for us on a day to day basis want to protect us. In this airport, a retired Navy veteran cared about my son. He cared about our family. He went above and beyond to put himself in the front of the ticket counter line to ensure that we would be cared for properly on the flight home. He went to battle for us. This was no stranger caring for our family, he was a Navy hero. Our military take care of us. This is what they are trained to do. This particular day I nearly lost my fight and I was scared about what would happen with our son on the airplane. We could not board that flight if our son could not sit with an adult. Perhaps the situation would have resolved on its own, perhaps not and we would have simply taken a later flight. However, thanks to this wonderful Navy veteran, we were able to sit together as a family and help our son fly safely home.

I only regret not getting this heroes name to send him a proper thank you.  I hope our thank you on the flight and again as we exited the plane let him know how overwhelmed we were with gratitude for his kindness.

"A hero is someone who voluntarily walks into the unknown." - Tom Hanks.

Walk beside me because sometimes God does give me more than I can handle!

In April, our son was being admitted to the hospital for an unplanned surgery the next morning. He had already had surgery two days prior as well as extensive outpatient testing. Friday was the day we were supposed to fly home but our plans had to change. Because of the sudden admission, we were told to wait in the doctor's exam room by a resident who would return to walk with us to the hospital. We waited and waited but no one ever came back. Sure enough, the lights around us started to turn off and the offices were closing. I said to my son, "I think we better find a way to get ourselves admitted to the hospital, we've been forgotten." The situation was messy in every aspect of the definition one could imagine. I found a staff member in the hospital who was kind enough to help us yet so very perplexed about our situation. My son and I were far away from home (we travel for specialty care). We suddenly were not flying home that night as originally planned. We had been forgotten in an exam room. We were alone. It happened to be a holiday weekend and we would probably not spend it with family.

The staff member gave us directions and sent us off towards the hospital to find our room.  As she said goodbye, she said to us, "Just remember, God doesn't give you more than you can handle." At that point, I wanted to look at her and say, "Oh. Yes. He. Does." But, she was so nice and meant well. Instead, she turned and walked away to carry on with her day. We on the other hand had to continue forward into an unknown territory, alone, uncomfortable, and anxious to battle our way to the finish line. The common phrase was a comforting way for her to say goodbye to us.  We were both uncomfortable though. Likely she needed closure to the situation to return to her job. Or... Could she have stayed with us and walked us to our room?  When paralleled with someone in pain especially a child, it is so much easier to exit out of the pain by using a comforting phrase rather than walk through the pain.  I. GET. IT. There is no judgment in my observation. I have done the same thing. How many times have I said to someone, "I will keep you in my thoughts," and been on my way.

It is so common when someone is sick or suffering to say to that person, "You're in my prayers and/or thoughts," "Let me know how I can help," "Things happen for a reason," or "God won't give you more than you can handle."  When people say these very words to me, they often go in one ear and out the other. They don't carry that much weight anymore because the words feel robotic and sometimes like a punch in the gut. Perhaps these written words of mine will come back to haunt me later. They should not though because I am just as guilty about speaking these well intended words to others. I have said these word to those I dearly love. We all mean well when offering common comforting phrases but here is the kicker...

Do people sometimes use these common phrases because they're easy, safe and often an easy exit out of an uncomfortable conversation and situation?

When people go through chronically tough situations, generally speaking, people do not know how to file and categorize them. Heck, I don't know how to categorize and file our own situation at times. Where do we fit in life? I feel like we are a square that wants to fit into a circle. We set out to create a new pattern knowing it's likely going to be both joyful and painful along the way. In the process, I find I can intimidate not only myself but others. Suffering is not a particularly a contagious and joyful invitation. It's not particularly the "party" people want to attend.

When people respond to me with what is a simplistic phrase, I never know how to internalize it. I want it to feel meaningful.  Then I think, why can't they just hold my hand and guide me? Can they just come to my house with dinner rather than me having to tell them what I need?  Is it easier to just give it to God and exit out of the conversation rather than have a hard conversation with someone who is hurting? We humans do not like to suffer and we do not like to get into messy situations. If we use a simple phrase, it makes our hearts feel good that we did respond to the hurting and it provides a quick closure. Or, are we just too busy? These are the questions I ask myself often.

Here's my challenge though to myself and to others:

I challenge us all to walk beside those in need - the good times, the bad times and the in between times. To help in trials who need us. Help them to find away to be in community when life is calm for them. If they hurt too much to be in the community, go be their community. Invite them to experience joy. If you are the praying type, pray with them and not just for them. Share your thoughts with them and not just for them. Try not to tell them what you are going to do, go do something unexpected for them.  Let your actions be known and not just spoken. Instead of saying, "You are in my thoughts," say, "Let's go chat over coffee." Turn "Let me know if you need anything," into, "I am going to bring you dinner on Wednesday (or send them a pizza from PizzaHut.com - seriously minimal effort for both. It's a total win!)." Inspire, "God won't give you more than you can handle," into, "If you feel overwhelmed, we can get through this together with God's help." And above all, let's not tell people things happen for a reason who are hurting or confused... Go be their reason to be!

I know for me that I have left many communities feeling as though it was too much to bear. No one did anything wrong (again - square trying to fit into a circle). It was just hard to be present in what appeared to be people bearing life when life seemed unbearable. Perception is not always reality but sometimes perception is the only felt reality. What I have learned through the years is that when my friends suffer or are absent, it is then that I must go be their community. That's my privilege as their friend.

As a favorite writer of mine Glennon Doyle Melton reminds us often, life will be filled with beauty, but it can be messy. We still must embrace it. We can do this as we come together, friends.

Finding the perfect in each day

It was a beautiful sunny day in North Florida. The skies were clear, the temperature was a cool 45 degrees and we were on our way to the state park to learn about the Spanish vs. the French and how they settled at Ft. Caroline. Our park ranger Herb was an amazing storyteller engaging all the kids on the field trip about the history of our amazing state. I felt pure joy taking in the sunshine, filling my mind with knowledge and spending time with my son in nature away from syringes, drains, bags and doctors. It felt like a fairytale but then my phone rang. I recognized the number instantly.

I am a worrier; it's not my best trait but at times, it can serve me well. I try not to ever miss an incoming doctor's phone call. If for some rare reason I do miss a doctor's call, I am texting the doctor back immediately or calling the office obsessively. Yes. I am, "That Mom." However, something came across me this day when my phone rang. I stared at my phone looking at the incoming call from the doctor's office and I debated as to whether I wanted to answer it. Why? What had happened to me? It was as if my fingers had frozen and could not slide the bar across my phone screen to answer the call to say hello.

Hindsight is a gift and makes things clear in time. What happened to me was I needed a break - a day to take in God's beautiful world and healing graces. I needed a day to dry out the rainy days to bask in one glorious sunny day. I needed a day to see my son be a child and play free of fear and worry of what the next hour might bring. It was a perfect day until the phone rang.

What did I do some might wonder? I did what each of you parents on this same exhausting journey would do, I answered the phone. Why? Because we rise above and we know we must take care of our children. We search for that inner strength when our perfect day has been interrupted. Perfect days don't exist like we hoped and dreamed they would.  

"Hello."

"Hi Lauren, It's Dr. R... I needed to let you know that the medication we are using is not working for..."

The rest of the conversation needs no explanation as any mom or dad on a similar journey can fill in their own version of an ending to the phone call.  

And so I hung up. I walked for a second sad that we continue a vicious cycle. I did not tell my son about the phone call because in the grand scheme of our journey this was not a big deal, I guess, or was it? I don't know anymore. I'm desensitized and so unless it's really bad, I am mostly non receptive these days to redundant news. Layers build and I melt. They rebuild again. I melt again. It's a cycle.  Choosing a photo filter to view my life through each day becomes my motto - Clear? Blurry? Process? Transfer? Fade? or None?

People often tell my husband and I that we are strong.  They tell our sons they are strong - both sons - the one carrying the direct load and the one carrying the indirect load.  We are not stronger than anyone else in this world.  We soldier through life as anyone does ready for battle to take care of their family and loved ones. We do rejoice as often as we hurt.  We become numb to bad news but never numb to the care and love from those who surround us.

Six weeks have passed since I initially wrote the beginning of this blog.  I remember that phone call well because at the sunset of that North Florida day, it did end up being a big deal.

In the end though, the day was perfect in my son's memory.  We dealt with the news accordingly.  What my son remembers is a perfect day with his friends exploring Florida history, Herb's kindness, running around, having a picnic, climbing trees and being a child. There are times when it seems I cannot protect my son from his suffering but this one day I could.  Because his day was filled with childhood perfection, my day is now remembered as perfection, too.  Perhaps it's time to not live for finding a perfect day but for finding the perfect in each day.

Where the Corners Meet: Breathe and Notice the Gift of Friendship Sitting Near the Edge

On this unique journey with our son, I have met some incredible people.  I frequently refer to them as my "corner friends."  A few weeks ago, I was talking to a dear friend and I said to her, "I remember talking to you in the corner of the classroom when our children were in first grade and it was then I realized how special my corner friends are to me." You see, corner friends are the people I meet sitting in the corner of the doctor's waiting room, the corner of the hospital cafeteria, the corner of the surgery waiting room, the corner of about every place a person can travel - a church, a school, or a restaurant. Because my life is often filled with overwhelming noise and news, I tend to migrate to the "corners" of life to detox because I often can take in no more noise or news for fear it will not be good.  The corners rarely fill up with large crowds of people.  They are a safe place to sit back to "take it all in." What I have found along my path is that there are so many people who are looking for a corner friend - a friend to talk to without all of the noise and clutter. They need someone to listen without asking the "How," "What," and "Why" questions. They need a friend in a quiet and introspective place.  We all tend to travel and meet in the corners of life seeking companionship in sometimes tough and painful situations. The most beautiful and genuine conversations happen in the corners of life with friends and strangers alike and always at just the perfect time.  Sometimes, conversation is not shared in the corners of life because life can be sad and talking about the diagnosis of someone we love can be unbearable. Sitting next to one another in solidarity becomes all the comfort we really need.

I looked up the Websters definition of the word corner:

noun: a place or angle where two or more sides or edges meet. 

My definition of the word corner is a bit different:

noun: a place or angle where two or more strangers meet to start a beautiful friendship.

To my corner friends on this journey, I admire you. You are strong. You are courageous. You are warriors. You are heroes. And, above all, you get it.  I know at some point you have been tucked in a corner along the way whether it has been wrapped in a jacket trying to catch a quick nap waiting to hear if your child has come out of surgery safely and successfully...in a corner of the cafeteria trying to read a book to take your mind off of things or scarf down food because you have not eaten all day...in the corner of a classroom trying to survive when life seems unfair because your child cannot do the basics of what the other children are doing...or in the corner of a physician's office trying to cope with hearing more bad news. I get it, too. I have been there often. The corner is a protected place. In the end though, if we keep our eyes open, we will meet some beautiful people in the same corners walking with us through life often on a similar road.  When it is right, we will invite one another in to hear our stories.  And, we will embrace one another with love, kindness and free of judgment knowing the battle we are all fighting is not an easy one. 

Cheers to courageous corner friends!  I am so thankful for all whom I have met on this confusing yet glorious walk of life standing where the edges meet.

To the Shuttle Driver Who Took the Scenic Route and the Nurse Who Missed Her Cab...Thank You!

Day 14...We are tired. My son and I had spent one too many nights in the Children's Hospital of Philadelphia as well as a hotel.  We had been with the most amazing physicians and nurses that one could ask for, but we were tired. My husband had left to go home so that our younger son could have some normalcy in his life. Being 13 hours from home is hard enough even on vacation. This was not a vacation.

Thirteen hours from home having surgery and alone takes an incredible amount of strength for a child. This was not our first trip in the hospital away from home and certainly will not be our last.  On this particular trip, we were wearing thin and fading.  This particular day was our final day at the hospital.  It was an outpatient doctor visit day.  My concern was my son was struggling to walk from his surgery.  He was in a lot of discomfort.  How was I going to get him from the hotel to the hospital? I had no car. I am no longer strong enough to carry him as he is growing up.  There is no worse feeling then being a mom who cannot comfort and help her son.  We have created plans in the past to help with transportation when there were no wheelchairs available in hotels (we have ridden on the luggage carts many times!).  I have learned that the world is often not really catered to those with disabilities.  Handicap spots are not often available.  Elevators fill up fast with those who can quickly get in them and wheelchair patients have to wait, people run past those who are slow, and many times there are no ramps for access into buildings that were built before laws for accommodations were passed.  It can be quite challenging.  We are the lucky ones though who had healing and regained the ability to walk.  My eyes have been opened to a new world.

This particular morning, I was very stressed. I did not want my son to see my stress. I said to him, "We are going to get through this, we are warriors and champions! Let's go get 'em tiger!"  After today, we are going H-O-M-E!" It's suddenly becoming crystal clear as to why I did not make the cheerleading squad in junior high as my son rolled his eyes with a "Whatever, Mom. You're not cheering me up!"  Nevertheless, he collected his new "hardware" and off we went to Dr. Z's office (another hero).  He had to leave his pride at the door because walking out into the world with new devices attached for the world to see is not easy.  We rode the luggage cart down to the hotel lobby and once again attempted to gracefully climb into the hotel shuttle and ride to the children's hospital seven states from home.  I started to choke back tears as my son was in pain as we drove over the first bumpy road.  Mamas can be emotional, I will admit it.  I noticed the Homewood Suites driver look in the rear view mirror.  He said, "Jacob, are you okay?" My son said, "It's okay, I am fine." He said, "Jacob, I am going to take the scenic route. Is that okay?" At that moment, I knew he was taking care of my son. He was allowing my son to feel brave and strong yet he was taking care of him by taking the "scenic route." Suddenly all the roads were smooth and not one passenger on the shuttle became upset because their ride took longer than it should. Grace was happening.

When we arrived at the Children's Hospital of Philadelphia, it was cold and misty.  My son stepped off the van and was bent over struggling to walk and visibly in pain. I could not find a wheelchair anywhere.  People were rushing by us.  This hospital is busy.  I was searching for a wheelchair.  It felt like an eternity trying to find a wheelchair.  In the meantime security wanted me to check in, but I was concerned about my son (Thank you, Mr. Security Guard for being so protective of all us - You too are a hero!).  I walked back outside of the hospital with my son to see if there might be a wheelchair and a staff member in scrubs who was getting into a cab jumped out of the cab and said, "You need a wheelchair, your son is struggling." I said to her, "It's okay, you are finishing your shift, please go home. Cabs are so hard to get." She said, "No, it's my job to take care of your son." Tears started flowing from my eyes. I could not help myself (again, mamas can be emotional).  She immediately ran and was able to find a wheelchair and helped secure my son. She gave him a hug and just like that was gone in a flash. I never was able to get her name to thank her.

Grace often comes from those who love us - our spouse, friends, family, pastors.  I do not ever take their grace for granted. They are my village who get me through each day.  However, the moments of grace that are unexpected such as the shuttle driver who had his eye on my son and took the "scenic route" to avoid the bumpy roads and the vigilant hospital worker who was so tired yet still noticed a hurting child and found him a wheelchair on a cold and rainy day at the end of her shift are angels on this earth.

These are my MIGHTY December Gifts!

- Lauren, better known as Jacob and Connor's Mom

A Letter to Dr. Zderic

Dear Dr. Z, Recently when we told you thank you at the end of an appointment and how much you had helped us, you responded with, "Don't thank me yet, Jacob's XYZ score is still the same." I have thought a lot about your response. You are a physician and a researcher, I am just a mother. We have been on a very long and painful journey with our son that has transcended over half of his lifetime. Beyond physical pain, it has been emotionally exhausting for our family, mostly Jacob.  We have traveled to doctors all over the country. Each time we would hear the words, "Try this and follow up in six weeks to two months," our hearts sunk. All of those weeks and months have added up to years of suffering and no progress in our sweet boy's life.

We have been greeted by caring physicians who wanted to help, others with preconceived opinions; we have been greeted by naysayers, and we have been greeted by physicians who likely were too busy to stop to really examine and research our son's medical history. Then there were physicians and nurses who left us in the middle of his treatment without contact or warning. It has been a long and sometimes lonely journey.  

There are physicians who are in medicine as a vocation, and there are physicians who are in medicine as a ministry. Once in a while, an extraordinary physician comes along. I believe with conviction that you fall into the latter category and you understand the relational need in medicine. You have given us the time and kindness to find out why our son has been in so much pain over the past years of his life.  As a mother, I want you to know that I am thankful. I understand that our problems are not solved and we still have a high mountain to climb. We may never have a cure, but we have hope, and this brings us new strength. It makes me rejoice that you are determined to help our son. For now, we are humbled that we have a physician who will listen, who does not budge or judge when our son is cranky, who is concerned about his emotional health and trauma, who is determined to make him better and have a whole life, who will give us all the time in the world when time is really limited, who is willing to call in the "reinforcers" when needed, and above all a person who cares, affirms and says, "Jacob, this is not your fault." You are a special person. You have brought us hope. We had so little. I have even seen smiles return in our family as well as some giggles. Why? Because you took the time to believe in our son and believe in our family. You have used some empowering words with our son that have helped him to believe in himself again. You have also used some fancy words that none of us could understand (thank goodness for medical dictionaries). Words are powerful and over the years, they beat our son down appointment after appointment. You are wise and you have started to restore hope (it's the word we use in our family often thus why I have mentioned it frequently in my thank you letter to you). You have a special gift and talent. Thank you for sharing it with our family. Thank you for loving and believing in our son. We believe in you, we believe in CHOP. All our best, Team Jacob