Mourning Milestones

My son Brady had "well" visit this past Friday.  We were a month late, but I was feeling pretty positive heading into the appointment.  Brady is not a fan of the pediatrician's office.  A wait time of over five minutes is a bad sign and a sure bet that Brady will be out of patience before we even hit the exam room.  I continued to stay positive when we walked in and only two other families were sitting on the well child side.  Brady looked at the fish, knocked over a few magazines, sat for thirty seconds on my lap to listen to a story and then proceeded to start licking the windows, chairs, anything he could to help with his oral sensory overload.  I started to sweat a little bit and avoided making eye contact with the concerned parents and one very curious six year old girl.  I tried not to let Brady's "unique" behaviors make me feel self conscious, but I was quickly losing my positive attitude...then his name rang out into the waiting room and it was our turn.

Brady climbed on the scale with a little prodding and actually turned his back to be measured.  My spirits were lifting and I was ready to hear about all the progress Brady had made.  How he was inching closer to milestones.  How year four was going to be the year.  The year when everything started coming together.  The words, the health, making friends, learning, jumping, and everything else four year old little boys do.  But as all these positive thoughts were running through my mind, the nurse scribbled Brady's height and weight down on the form and handed me the standard 3-4 year old"well visit" milestone sheet.  Oh.  My heart sank and I fought back the tears.  There in front of me was a laundry list of milestones Brady was so far from reaching.  Hopping on one foot.  Playing make believe.  Identifying his colors, letters, numbers.  Potty trained.  Understands right from wrong.  Speaks in sentences.  I had to stop reading.  I focused on the two facts that made sense to me.  Brady's height and weight were in the 50th percentile.  He was right in the middle.  His body was developing "normally."   We were making progress.  But reality was creeping in and rearing its ugly head.  Brady was falling further and further behind developmentally. I stopped myself and instead focused on the smiling little troublemaker tearing up the exam room.  I looked at my little boy.  He was crashing around the exam room.  Pushing the doctor chair from one end of the room to the next and laughing.  His laugh was unbridled and full of such life.  Brady did not care what a four year old was "suppose to be doing."  Brady doesn't care about milestones or missing milestones.  I told myself I should not either.

I have been getting so much better at not focusing on what Brady is not doing.  I know he is developmentally delayed.  I know he will always be developmentally delayed in one way or another.  Those are facts.  Those are things my mind knows.  Now my heart is even catching up and I have stopped comparing him to other children.  I have stopped focusing on what he cannot do and instead I have tried to focus on what he can do and knowing that the things that he cannot do are really just things he is not yet ready to do.  I have made an effort to stay positive, despite the challenges, the disappointments and the never ending what ifs and what nows, that plague our daily fight for Brady.  I know Brady has made progress.  I know the steps are small and the milestones are slow to come.  But they are coming.

I composed myself and waited for Brady's doctor's soft knock on the door.  Brady has a wonderful pediatrician.  A man that has been with Brady since day one.  A kind and soft spoken man .  It was so unusual for a pediatrician to visit a newborn in the NICU that a nurse asked me if Dr. Rao was a relative or family friend.  I answered no...he is just someone who cares very much for his patients, especially those who need a little extra special care in this world.  Dr. Rao has always been the most positive of all the doctors on Brady's extensive team.  He has always said to us..."Brady will be ok.  He will be fine.  He is just a little behind."  He has never given up on Brady.  He has searched for answers and always encouraged my husband and I to focus on the positive.  We have sometimes doubted that Dr. Rao is seeing what Joe and I are seeing in our little boy, but he trusts in something that is more than what he can read in medical journals.  He trusts in the spirit he sees in Brady's eyes each and every time he has helped our little boy.  I answered Dr. Rao's questions about development.  I answered the tough ones with honesty.  We were in agreement that Brady is cognitively impaired and our definition of "ok" and "fine" will forever be evolving.  He didn't focus on milestones.  He focused on how much healthier Brady has been this year.  He focused on how alert and attentive Brady was and how focused he was on opening the door and escaping the exam room because Brady knew darn well he was in a doctor's office.   Dr. Rao kept the conversation realistic, but always positive.  I am grateful every day to have a doctor who cares so deeply about my little boy and our family.

I will always mourn the passing of milestones.  A friend of mine with a teenage child with special needs once told me that for the most part she is good with their day to day life...but once in awhile, when her friend's sixteen year old gets his driver's license or goes to a high school homecoming, she mourns the passing of another milestone that her son will not reach, but then....she moves on and focuses on the good.  I am trying very hard to take those beautiful words and live by them.  Give myself a few fleeting moments to mourn milestones, but then move on. So, for now, I focus on the milestones that may not seem like a noteworthy accomplishment to most, but they are to my Brady.   A few weeks ago I took Brady to McDonald's before a therapy session. A simple trip to a simple place, but I have always avoided restaurants when it is just Brady and I.  I usually do not have enough hands to carry Brady, a tray of food and push along a highchair for him to sit in.  On this day, I let the highchair go and gave Brady a try in the booth.  There he was, my little boy, given a taste of freedom, of independence, of "normalcy' and he savored it.  He smiled his big grin, the one that lights up his face, and enjoyed little bites of french fry dipped in ketchup and carefully cut up chunks of cheeseburger. He enjoyed being a little boy.  He enjoyed a new milestone...and so did his mommy.