The Sweetest Boy I’ve Met

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Though these paragraphs are all my account of Paulie’s life to date, someday he’ll be ready to share his own. He doesn’t remember being sick at all, which is a blessing. I’m sure he has a different perspective on things. Until then, I’m his voice. This is the first time I’ve shared his whole entire story. There’s lots of bits and pieces that are significant that I left out. Though there’s so much bad things that my poor guy has gone through, I share it truly to give you a picture of a boy that has overcome many huge things with the help of God.

Today is my Paulie’s 13th birthday. 13 years ago today at 2:45 AM, after laboring for 19 hours and 45 minutes he was pulled lifeless and purple from my 24-year-old body. Shoulder dystocia (his shoulder got stuck on my pelvis) in combination with his umbilical cord being wrapped tightly around his neck was the official cause of the “hypoxia” (lack of oxygen) that lasted for nearly 20 minutes. Though, I know that it was truly the enemy hovering to snuff out a mighty warrior for God. My best friend Jackie prayed furiously as I was completely oblivious to anything that was happening at the time. They never really told me anything, just that his shoulder got stuck and that he needed to be observed in the NICU for a while to make sure he was ok. It wasn’t until I was pregnant for my middle guy, Christopher, when my OB discussed with me about what had happened to decide what we should do in that pregnancy.

At 1 month old, Paulie started developing a strange mole looking rash on his scalp and a very severe diaper rash in his groin area. Nothing made it better, everything made it worse. After numerous visits to the doctor and numerous prescriptions that were useless, I found myself changing his diaper one evening. He let out this deep guttural scream. In that moment, in an absolute instant, God told me to take him to children’s hospital because something was wrong. I did. Accompanied by my ex-husband and my best friend , Jackie (she’s always been there for me), the doctors paraded past me and my wailing boy all looking and checking and observing and then walking out. No one had a clue what was going on. No one had ever seen anything like it. I worked in the medical field previous to my marriage and so I knew what all this meant and I knew that it wasn’t good, but I didn’t truly understand the depth of what was happening. Paulie was admitted and he and I stayed at the hospital together for 5 days. Each and every day was the same story. Doctor after doctor parading through while I tried to console my breastfeeding 1 month old baby. IV drip after injection after drip after injection, but no remedy and still no answers. On our last day, they sent us to the dermatology clinic (in the bottom floor of the hospital) for a biopsy, which was preformed without anesthetic in his groin by a nervous medical student with his hands shaking. It was horrible and my beautiful son wailed in pain some more, adding pain upon pain upon pain to my precious boy. We were sent home to follow-up in 2 weeks with the dermatologist. But at home, he still got worse. He still writhed in pain. Now, I have to tell you that being a new mom to a perfectly healthy bouncing baby boy is terrifying and beyond difficult all on its own, but having a baby that constantly cries and is so obviously so miserable was downright unbearable, and these words don’t even begin to describe it.

So, we went back to the pediatrician. We were asked to wait in the room. The NP came back and instructed me to go straight to the Children’s Hospital dermatology clinic (an hour away), that they would be waiting for me. It was a rough ride there, just me and my baby. I listened to the radio and tried not to think. When I got there, the clinic was empty, they had stopped seeing patients an hour ago. We were taken back. Paul was, again, screaming. I tried to nurse him and he finally found peace. Then I saw the shadows of feet under the door, three pair, and they were out there for a while. They came in and it was clear that two were students and one was not. The older gentleman started talking about rare diseases and blood disorders. He told me the diagnosis, Langerhans Cell Histiocytosis, and the rest completely blurred out. My baby crying. The doctors talking. It was all fuzzy. I picked up words. Treatments. Hematology. And I glanced at his paperwork before I left and saw the diagnosis there, otherwise I probably wouldn’t have remembered that. I loaded my baby into the truck and as soon as he fell asleep called my ex-husband, my mom, and my best friend. Through tears I tried to explain, but I couldn’t because I didn’t know anything really. I got home and googled. That’s when terror struck. You see, Langerhans Cell Histiocytosis is a form of childhood cancer (only recognized as cancer last year, in fact). We’re told it’s rare, but 4 boys from our small town had the diagnosis of histiocytosis (the category of diseases that Paul’s falls into). We would soon discover that Paul had histocytic lesions on his skin and in his lungs. Like, a lot in his lungs. When I saw his CT, I thought the lesions were normal lung tissue there were so many. This made his disease complicated and required chemotherapy. Over the next 21 months Paul was have three surgeries to insert and remove (a faulty) central line that was placed under his skin. He would get chemotherapy weekly for awhile, then monthly along with daily chemotherapy tablets. Steroids. Anti-nausea meds. Special concoctions to counteract the terrible diaper rashes he would get after chemo. Sedated CT scans and full body x-rays every 3 months. Trial and error with anesthesia. Him throwing up down my back because a constant thing and it didn’t even phase me after a while. But he was honestly not that “sick.” Not like most cancer kids. We were only inpatient in the hospital about 10 times. For an infant on chemo that’s a miracle. He breastfed throughout the entire treatment and until we knew he was ok. It was one of the hardest times of my life. Honestly, I didn’t even process most of the emotions then and I suffer from PTSD to this day. Even after all the protocol treatment, Paulie still wasn’t better but he wasn’t getting any worse. So they stopped everything and sent us home to “see what happens.” Those are always fun words to get from your expert specialist. So, we went home and we waited. At 6 months, nothing changed. At 1 year, nothing. 2 years, nothing. 3 years, something (41 came). At his three-year post chemo check up he had all of his typical blood work and CT scans and x-rays. This time, the doctor nonchalantly said, “His lungs are normal.” After questions about exactly what that meant, we learned that Paul’s lungs were completely clear. No lesions. No scarring (which they guaranteed would be there and possibly cause asthma later in life). Nothing but 100% clear and healthy lung tissue. We now no longer even require check-ups. The enemy had hovered again, longer this time, but God prevailed and healed my boy. Paul has been in remission for 11 years.

Let me make a small aside here. There are SO many children out there so much worse than Paul ever was. I watch their stories. I watch a few win their fights. I watch SO MANY lose theirs and I am so deeply grieved. Though I know that none of those parents wish harm on anyone else and don’t dislike my son’s remission story, it is still glaring that not all children have this outcome. I know that they hurt so deeply and if you are one of them know that my heart still breaks for you. I know that God has a plan. I don’t understand it. I don’t understand why my son was healed and perhaps your child wasn’t. I don’t get it at all. I am so sorry for your pain. I am so sorry for your loss and I love you dearly.

As an infant, Paul cried a lot. Like constantly. He was in pain. He felt things that we don’t understand at all. He went through things that a LOT of adults never ever go through and I’m glad that they won’t. But it was very difficult to parent a constantly crying baby. Once, while I had left the house, my ex-husband hung out with Paul. I wasn’t gone long. When I came back, my ex-husband told me that he almost drowned Paul in the bathtub. But he just couldn’t. I will never make excuses for what he did. It was terrible. The enemy was there, hovering, trying to take him, but God protected him.

When Paulie was an infant, he made all his development milestones, most of them earlier than typical. Other than being sick he was a quiet and calm baby. When he got older, he stopped talking as much. He stopped saying words he used to say. When we went in for a well check (taking a sick kid to a well check, oh the irony) at about 24 months and the pediatrician was concerned about his speech. We had an in-home intervention specialist come in and evaluate him. He was then diagnosed with speech delay. We were blessed because the small town we lived in had a MRDD pre-school where kids got to have fun in conjunction with therapies. Paulie was admitted to the school early, before he was 3 and he started speech therapy immediately. Soon after, he was diagnosed with a sensory integration problem, and began therapy for that. He’s been in therapies ever since.We had issues with public schools not noticing him in class. He was bullied. Paul is the sweetest boy. Even when someone is hurting him all he can think about is the other person and not wanting them to get into trouble. Paul wasn’t thriving in school and no one told us. It was a really hard year. We decided to home school. Then we moved from Washington state to Illinois and Paul started having very serious anxiety. He would break down and cry in public places. He seemed depressed. He started going to therapy and gradually has gotten much better. He rarely struggles with it and when he does he knows just what to do. He is a completely different child. In the last year, Paul was officially diagnosed with autism. Let me tell you that being his mom for those 12 years I knew that he wasn’t like other kids. There’s no question. I was not a bit surprised by the diagnosis. But there’s just something so final when they actually tell you. It’s been devastating. You start thinking about future lost. About how AMAZING he is and how that’s not going to be the first thing people see in him. But let me tell you, it’s all just the enemy hovering again. That diagnosis is not the end of this story and I can’t wait to see what God does with it.

I can’t tell you why the enemy has pursued my Paulie so hot and heavy in these 13 years. I can tell you how amazing he is. He is absolutely the sweetest child I have ever met in my life. I’m not saying that because he’s my son. He really is. Ask around. He’s so thoughtful. He’s so caring. He loves people. People love him. Babies ADORE him! He wants everyone to be included and when they aren’t he works very hard to include them. He will give anyone anything if he knows it’s something they want or need. He treads in life very lightly because he never wants to offend or hurt others. He KNOWS he is loved by Lyle and I, by God, and by the people we allow around him. He is ALWAYS happy. He absolutely loves life and just exudes joy as he bops around the house. He’s so strong. That boy shaved 3 minutes off a mile in 6 weeks! Ask any runner how absolutely ridiculous that is! His very last race he ran and pushed until he was rolled in a ball on the grass at the finish line nearly in tears. He never gives up. He works hard. He will give you every last bit of effort and expertise he has. He knows no other way. He has quirky interests. He loves to combine weird things in his food. He loves hot sauce. When he prays at night, he never prays for himself. He prays for kids around the world, that they would be provided for. He prays for his aunt, that she would go to church. He prays for his cousins, that they would learn about Jesus. He prays for his grandmother in Ohio, that she would regain sight. He prays that his dad (Lyle) and I will get our next promotions. He always puts others first. He loves his brothers so much, even though they pester him. He looks just like my Grandpa Lewis, who I miss so much. He has the same ornery smile that he had. He’s very proud to look like him and wants to learn all he can about him. He also beams with pride when I tell him he likes the same things or does things that are similar to Grandpa Lewis.

God has a great plan for my boy. I don’t know what that holds other than a few hints that God has given Lyle and I. I don’t have a clue what his future will look like. But I do know that he would LOVE having you in it. If you see him, say hi or introduce yourself. He may not look you in the eye right away (that’s a real struggle for him), but he is still overjoyed to meet you. He’s a great friend, a great brother, and without a doubt a great son. I can’t thank God enough for him. And now I have to teach myself to start calling him Paul instead of Paulie… 🙂

To learn more about Langerhans Cell Histiocystosis vist histio.org by clicking here.