The time seems to be flying by. Looks like another appointment, another check up, another four hour trip, only to reveal the same news. The time is January 8th to be exact. I will remain optimistic, but always in reality. Some days it seems like it was only yesterday, others an entire lifetime ago.
I guess some form of explanation is in order. You can’t truly understand the story until you’ve heard the whole thing.
Note:Some things have been left out and names have been changed to protect the privacy of this blog and those directly connected to it.
From the moment he was born, I knew something wasn’t right. He was absolutely perfect, not a hair out of place. The call it mothers intuition. After fighting for the entire first year and a half of his life, I finally reached my breaking point. His pediatrician did everything but call me insane. Parading around like some “know it all” trying to belittle me. Claiming that I was an “over bearing first time parent”. Even went on to say it may be in the child’s best interest to be brought to the appointments by someone else. Someone other than his mother?
Jumping in the car and driving to next town, I don’t recall how I managed to run into the doctors office, much less demand immediate help. Once the staff realized how serious I was, they grabbed the nearest doctor, and escorted us to a room. I remember it like it was yesterday. The kind look on her face. A little tremble over her eyebrow letting me know she was genuinely concerned. She gave us her undivided attention. Once she heard our story, the restless nights, constant wheezing, loss of appetite, and all of the other horrible symptoms. She felt the same heart stabbing pain, picked up the phone and began making calls.
Later that afternoon she called to say she found a specialist a few towns over and that was her best guess. She later called to say the soonest she could be seen was three months away, but another doctor there would be happy to take the case. She followed that statement with “So I said sure! Your appointment is tomorrow.”
Relief, and anxiety began the battle in my mind that I would be tormented with over the next few days. Once arriving, the staff where friendly, the office was nice, and the Doctor, he was like nothing I’d ever seen. From the moment he walked in I felt this sense of peace. He asked to speak with the child, not myself or my mother in law. Only the child. (My husband was out of town on working.) Once he managed to say the simple word “no” to the doctor, the answers where coming. “There are several different scenarios, all are rare. Surgery is in order. Go home pack your bags, pray, and come back first thing in the morning.”
Leaving was the hardest part, my legs seemed to have lost all ability to move. Once in the car it was a quite ride home, followed by packing, crying, praying, more crying, and the long trip back to a hotel down from the hospital. No sleep for anyone that night. The next morning seemed to creep by. Anxiety building and worry taking over. The time finally came to take him back to the operating room. There are no words to describe the gut wrenching, heart breaking pain of giving your child to someone you don’t know and allowing them to perform a life threatening procedure. The nurse assured us it normally takes around 30-45 minutes to get in, take pictures and get out. Nervous I asked “Should it take longer can someone come out and reassure us?” 45 minutes later she did just that.
After what seemed like an eternity (2 hours and 37 minutes) the doctor appeared. Sweat on his brow, pale face, pictures and papers in hand, he leans in and pulls me aside. My father stepping in “We’re all family here, you can tell us too.” With a small nod of my head he proceeds. “In my line of work, we don’t usually mix business and religion, but I’m telling you, I don’t know what God you pray to, but you had better get on your knees and thank him. It’s a miracle that baby was alive when he got here! We’re going to have more results later when our samples return but I can tell you that he has a very rare respiratory disorder. They’re working toward classifying it as a disease but its still in the early stages. The good news is you’re in the right place, the bad news is there is no cure.” The words seemed to paralyze me. No words, no movement. The entire world seemed to have faded into mass chaos blurred out by my heart beat.
An hour or so later the nurse came out announcing we could go in. He seemed so weak. So small, and yet so strong. He was released a few days later to come home. That was 3 years and 8 months ago. We’ve had our ups and our downs, but we still have our boy! The journey has been one of heartache and great joy. It’s not as rare as it was when we started this, but it’s still uncommon.
Most people who have heard this story say “I don’t know how you done it. “How did you know?” Or the ever popular “He’s so lucky to have you for a mom!” As much as I appreciated the positivity, one thing is for sure, he isn’t lucky, he is blessed. I give every ounce of credit to The Lord above. He gave me the strength to keep fighting, and my son the strength to hold on. Everyday we have with him is a miracle in itself. After successfully completing 11 surgeries and countless other procedures he just celebrated his 5th birthday!
Moral of the story:
Never take one single breath for granted and when you have a gut feeling, don’t let others talk you down.