Tonight, I've let them all down

Tonight, I've let them all down. I have this list of people whom I love and I just keep letting them down. The list keeps growing. I'm not trying to hurt or disappoint any of them. It's not intentional. Life throws a curve ball, then a hurricane, then just a bunch of extra wind and the infernal weeds take over, the pine needles fill the gutters of my life and I'm overwhelmed again by all that I cannot do, all that I cannot be. 

I make decisions, choices, I work (hard - sometimes, probably too hard), and I try to do what I know to be right, honest, efficient, diligent, dependable, and kind. Then, there's that pesky human factor. The reality is that I fail, time and again. I am reminded daily - no, almost minute by minute - of my desperate need for the Divine. The wind blows again and I have a new set of weeds to reckon with. And every now and again the burn pile isn't the answer; I actually have to sift through the darn weeds to find what might yet be good. 

The reality is: I'm insufficient in a lot of ways. I know it and I'm reminded of that truth more often than I'm comfortable admitting. Understanding that reality has never been easy for me, but I know it is important. I do know that I am letting others down, even in my efforts to be what I need/want to be to/for them. Long-distance friendships/family relationships are the hardest, as I live so intensely (life is intense!) in the here and now. All of you - you know who your are - must know that I think of you all the time, I pray for you, I wonder about your lives, and if I know about your joys and sorrows, I share in those. And for those who live near and share life with me, to a small or large extent, I recognize that I am very possibly letting you down, too. Sometimes, in the little ways. Sometimes, in the large ways. 

I would name you all individually, but that would just be uncomfortable for all of us. My purpose in writing this is not to hunt for encouragement that I'm doing better than I think I am. Maybe it's a confession of sorts. Maybe I'm writing it so that I can sleep more soundly tonight. To my boys, if you should someday go back and read this blog of our lives together, know that the struggle is real. We all let others down, fail to meet expectations, and we all disappoint others. And yet... this is just a thread in the tapestry and the beautiful weaving of our lives continues well beyond this thread. 

For me... it's another mountain to climb and if I'm being honest, I love mountains and they are worth the climb. 

How did we get here?

 Once upon a time, there was this guy - we called him "happy town" - who was the cheeriest member of our family. He was the baby who never slept, true, but he was always happy. He smiled about everything. He insisted that I "wear" him all the time in my little pack - a backpack wouldn't suffice, so I wore him in a little pack that held him on my hip so I could still be hand's free and capable of accomplishing my list of to-dos. He was the happiest participant in all of our activities.

Then, he got the Norovirus and everything changed. 10 days of profound sickness and I watched our "Happy Town" disappear. My little baby boy - just 14 months old - was locked up, inside himself. He stopped making eye contact. He withdrew from life. He lost interest in everything. His smile faded. He started screaming for hours upon hours. He no longer interacted with his brothers. He lost weight and went from chubby toddler to nearly emaciated. When I would sit to read to the boys like I always had, he would choose to sit on the floor in a different room instead of curled up in my lap. His very limited vocabulary dried up instantly. My grief started to take root. 

Lochlan also developed a violent milk allergy during that week of sickness which has lasted over 12 years now. If he was exposed to even a tablespoon of milk, he would get dark circles underneath his eyes, throw up for hours and then rage off and on for up to 72 hours. And he LOVES MILK. Anything cheese simply cannot be resisted. Over the years we've had cheese lockboxes inside our fridge, a dedicated milk product fridge, a lock on our actual fridge... we've tried it all. His therapists have coached him on an almost weekly basis so that when we say, "cheese is: __________" he fills in, "BAD!" 

My search for answers started 12 years ago and I think it's a journey that will encompass the remainder of my life. Genetic testing reveals nothing significant. Some things have made a profound difference, and some things avail nothing. I've been given doctors who are literally a gift from God - doctors who have helped escort us from seasons of hell to seasons filled with hope and promise. Lochlan has taken us all on a journey that I certainly never predicted or could have fathomed on the day he entered into our world and we have all been profoundly changed in/through the journey. In this hunt for answers, I know that it is and will always be my responsibility to bark up every tree. 

A few months ago, we were told about a local immunologist who treats "allergies", or more accurately, the body's autonomic system. Through the course of several treatments addressing different areas in his body, the biggest thing I noticed is what I can best describe as an incredible reduction in his body's inflammatory response to things. As if his brain had been rewired with different neural pathways by which to respond to external and internal factors and variables. After the first session, we saw an incredible reduction in (mostly) irrational fears. We (including his therapists) have worked with him for over 2 years to ride our zipline down the field with his brothers. Within 24 hours of that first session, Lochlan went out to the field on his own and rode the zipline down - multiple times! Then, when we were driving up from our front gate, Lochlan jumped out to ride along the running board of our car, which he was always too scared to do before. 

After the second session, Lochlan was able to transition in school from subject to subject without difficulty. Previously, changing subjects took a great deal of finesse from his masterful tutor, Aunt Debbie. She would have to carefully ease him in a different direction to prevent meltdowns or shutdowns. After the third session, he was using words - actual WORDS -  in response to our questions. I told him, "Lochlan, please make sure you don't take off your sunglasses while you're playing outside today" (because we believe light triggers his seizures). He responded, "Okay. I won't take off my sunglasses." A complete, unprompted sentence! In response to our fourth session we found Lochlan sitting on couch reading through books! He has never shown a great deal of interest in books since he became locked inside himself. Now, he frequently sits down to flip through picture books about WWII planes, or everything-to-know-about-the-world information books, or he actually reads through books like the Bernstein Bears. After the fifth session it was his humor that was unlocked. He has always found a few things funny, but now.... NOW! Wow! We were watching the mini-series about James Herriot and Lochlan doubled over laughing in the really funny scenes. When Aunt Debbie asked him, "Which animals are farm animals?", he pointed to the alligator and cracked up laughing. I'm not sure which session it followed, but Lochlan has started to put on a tiny bit of weight. He's still thin, but there is a little meat on his thighs and that is a very good thing. 

His most recent session was last week. The doctor addressed his milk allergies, and specifically his allergy to the protein Casein. During the session he started having a great deal of flatulence which was a clear indication to me that something was being altered. The doctor told us to wait 24 hours and then allow him to have anything with Casein. We very trepidatiously fed him pizza, covered in cheese, for dinner. I felt like I was waiting for a ticking time bomb in the hour and a half that followed. However, 90 minutes after the pizza, instead of dark circles, lethargy and/or raging, Lochlan jumped into my lap, brought me a book and asked me to read to him. I have cried a lot; tears of joy, of absolute disbelief. Eating cheese, and Mommy's yummy coffee creamer, and real whipped cream, has been such a delight for this little man. He seems to have more energy, he's laughing more, he is more engaged, he's using more words, he has greater concentration, he makes eye contact by default and he gets to eat CHEESE! This is a miracle for our family. 

We have a long road yet ahead of us, and I don't know what tomorrow holds. but we are rejoicing in the miracles of today. You all should come! Visit! Have a bowl of ice cream with us, and with Lochlan! 

It is not the experiences which change us

 

In 2022, during the flooding horror, Declan and Madigan, scraped together their funds and purchased a delightfully soft stuffed bunny which I have slept with every night since. They had seen me eyeing it when we visited the store a few weeks prior and they were insistent that I should have it. Yesterday, I walked into the bedroom to find the arms ruthlessly ripped off of the bunny, which was lying on the floor in a corner. When I confronted Lochlan about the incident, he giggled and made it clear that he was the culprit of the crime. I was both hurt and unbelievably frustrated because I simply don't understand the motivation or his subsequent pleasure. I was able to take some time to derive an appropriate and effective reminder to encourage him to choose kindness and better choices. In the backdrop of all the drama, my subtle, action-oriented first born hunted for the missing arms and sewed them carefully and seamlessly back onto the poor little fuzzy amputee. These young men take such good care of their mama's heart. 

On our way through the woods one day we passed by an abandoned campsite and the boys pledged to clean it up the following week. So, last Friday on their "day off" from school we hooked up the flatbed trailer, put on some gloves and headed out for the cleanup. It was the absolute WORST campsite we've tackled to date. There weren't any hypodermic needles this time, so that was a plus, but these people were incredibly gifted at DEPLORABLE. My dad joined us for the job, bringing his trailer as well. It took us a lot of hours and we took 3 trailer loads to the dump, including 7 broken-down high quality tents filled with personal items, containers of food, 5 bag of unopened dog food, cat litter, opened and unopened bottles of Gatorade, broken radios, bags and bags of mildewed clothing and all topped off with feces and urine. I didn't hear a single complaint about the work and these boys treated the venture as if it was just "another day on the job". Gosh, I'm so dang proud of them. 

Lochlan was having a rough day and Declan wasn't feeling well. I walked in from the barn to find Lochlan curled up on the couch listening to Declan read him his favorite book. Selfless love. It's beautiful. 

 

The everyday grind hasn't kept us entirely from our adventures this past week. We've been working with the horses a lot, taking walks, riding, driving, teaching horse trailer etiquette (loading and unloading with ease), ground work and learning how to jump over logs. I love watching the boys bond with their horses and learn a lot about themselves as they teach these huge animals. I'm being thoroughly challenging and loving training Sadie Rae. She's a lot of horse and the more I get to know about her, the more I'm impressed. She's a magnificent, complicated, sensitive, smart and curious animal. I'm also learning things about myself in the process of opening her up to discover her potential. 

I've been reflecting a lot this week on the things that shape us. Ultimately, I don't think it's our experiences which change us; it is our responses to those experiences. 

I'm thankful for another day, for the people who fill my life, for the places I'm allowed to explore and know, for the One who is in and through it all.