Our Normal...

I know it has been a few days since I promised an update on Max’s run-in with Scarlet Fever…things have been a little hectic and I couldn’t quite put down into words all the thoughts running through my head the past few weeks. The short story is that Max has recovered from his latest illness. The longer version of the story involves a painful GI reaction to the antibiotics resulting in an ER visit. And, since nothing ever ends simply for our baby, the routine labs drawn during the ER visit came back abnormal. We are now in the process of sorting out if it is a temporary issue or an indication of a bigger issue. We had some more labs drawn last night so we should start getting some answers in the next few days.

After we wrapped up getting blood drawn last night, Max told me it was his favorite part of the day. I count my blessings every day that he is so tolerant and patient with all of the medical procedures he has had to endure. During our last ER visit, he sat quietly the entire time and watched TV…got an x-ray by himself…and had an IV inserted as if it was any other day. I can think of several adults (including Chris) that could learn some lessons on having medical procedures done from Max!

Our little boy turns five in two days. I am filled with emotion when I think of how far we have come in five years. I have been looking through pictures from Max’s first year in an effort to put together a small slide show for him. Each picture reminds me of all of the pain and tears that we both went through his first year. In almost every picture, Max has a bright red, screaming face. Unfortunately, that is how I remember most of that first year as well…my face was also bright red and screaming most of the time! I vividly remember thinking “All I want is a normal baby.” Most of my friends had children born around the same time as Max…and I was not able to relate at all to the bonds they were forming. My friends were going to Mommy and Me classes, joining clubs with their children and travelling to relatives to show off their new bundles of joy. I was dealing with a baby that rarely smiled until he was four months old, calling specialists’ offices every day hoping for a cancellation and navigating an insurance system I did not understand.

Five years later, we have a “normal” life. It may not be normal to most people, but to us, it is our normal. A trip to the ER no longer worries us…we understand insurance companies are going to deny treatment requiring some fighting on our part…and I no longer yearn for a “normal” child. There is not a thing in the world I would change about Max…I wholeheartedly believe those days spent attempting to comfort him have forged a bond that will never be broken.

Max has also accepted the fact that this is his “normal”…he goes to more doctors’ appointments than most kids his age…but he also is much closer to his pediatrician than most kids. He gives a great big hug every time we are there. He rarely complains about not eating cake and ice cream and he will immediately tell people he can’t have pizza at parties. He understands there are days that he will have to go to school even though he doesn’t feel well. We could not ask for a more well-adjusted little boy.

Through all of the tears that first year, some many positives have happened. I found an inner strength that I never knew I had in me. I have learned to tackle big insurance companies and small doctors’ offices without thinking twice. I have also learned the true power of friendship. I have had the same circle of close friends since high school…I cannot imagine the past five years without the solace they provided with their phone calls, unexpected visits just to check-in and crazy girls nights that allowed us to leave all our worries behind. My mom has also been a rock to me…she cradled Max many a night when Chris was away and I just couldn’t bear to hold him any longer. She also encouraged me to follow my instinct when I thought something wasn’t right.
They say hard times will either make or break a marriage…luckily I have the most supportive husband in the world. Chris spent many a sleepless night cuddled with Max on the rocking chair. He spent every single night in the hospital any time Max was admitted. At the exact moment I reach my breaking point, Chris silently picks up and allows me the time to regroup.

I have been talking frequently with a friend going through some similar issues with her newborn. The first thing I started to say to her was that it will get better – then I stopped myself. Five years ago I did not want to hear people when they tried telling me it would get better. I could not imagine a day in which my son would not scream in pain and be inconsolable. The idea of going a single week without talking to a doctor or nurse was unimaginable. I simply told my friend that the problems may never go away, but there will be day when you find the strength you never thought you had and the problems just become another part of the day. The abnormal becomes normal.