Monday, June 17, 2013

Never gets easier

As I walk through this journey that continually changes, so do my emotions and day to day life.  There is no preparation plan for tomorrow.  I tackle each day one minute at a time.  On days that I don't plan to do anything, I still find myself doing a thousand things.  A mother's job is never done.  No matter how hard to I try to keep up with the house, the kids, the calendar, errands and family...there is always something else that needs done.  When a new month comes, I check the calendar for big days; by the end of the first week, it quickly fills with appointments and important dates.  Down days and date nights are hard to come by.  I'm sure many people on the outside looking in, think that being a stay at home mom is easy.  They probably imagine me sitting on the couch, watching soap operas and eating bon bon's.  That is hilariously wrong.  Nap time usually consists of laundry, phone calls, and tidying.  

Recently, I find myself forgetting things that I don't normally forget.  I find myself going to the wrong places for field trips, outings and errands.  I don't hear people say my name or asking questions.  I think my brain is officially maxed out; at least that is my explanation.  In a perfect world, I could hire help or an assistant to help me keep up with everything.  Who knows if there's a medical explanation for this new phase in my life, but who has time?!  I have to force myself to focus and stay on task.  I find myself feeling stressed and overwhelmed easily; things I don't ever want to be.  I don't want to get frustrated and irritable over the little things.  Although this summer is full of huge adventures and exciting vacations, it has still been stressful.  There are at least 2 appointments at Mott Children's Hospital every week for the next 2 months and has been for the last month.  Lots of new specialists and upcoming tests.  Lots of new medical terminology and equipment.  I am developing medical problems of my own that force me to pause life and take care of myself; something that isn't easy for me.  

As other people celebrate their child passing another grade and preparing for the next, I find myself celebrating much different milestones and preparing for entirely different goals.  Just today, I took Carter for measurements of his head for a protection helmet and spinal support.  I find it difficult to choose colors that would look good for these new pieces of equipment.  How do you choose "good" colors for a helmet?!  This Thursday, we meet with the DME company to look at new wheelchairs, potty chairs, feeding chairs, car seat, and walker.  Lately as Carter progresses, so does the need for medical equipment to accommodate his changes.  I still get angry and sad when I plan for these things because they aren't things I wished for Carter's life.  I still wish that I could heal him and make his world okay in every way.  I still hold onto hope that it will be some day.  How do I explain to other people that these things weigh heavily on my mind every single day?  This last couple weeks has been especially tough and I can't completely pin point it's origin.  All I know is that I can't keep up with everything life requires of me.  The other day, as I sat at a red light and a song played that made me think of all the unexpected challenges in my life, I was ripped back to reality by the car honking behind me to go as the light turned green.  I wonder if other moms who are walking this familiar journey do the same thing?  Is it just me?  

When I sat down in the waiting room of the lab this morning, I quickly noticed another family across the room who had a son with special needs.  His mother looked at me with an understanding smile.  A smile that brought me a peace and comfort for the first time in a long time.  She nodded her head in an unspoken understanding.  Her journey travelled much longer than my own as her son was probably around 20 years old.  She kept reassuring him that he wouldn't have to wait much longer and he admired his favorite DVD's as he patiently waited in his wheelchair.  I couldn't help but glance in their direction several times while we waited too.  Although I didn't know their names or all the things they have been through, I knew them.  I felt for them.  They are me in another 15 years; if I am the luckiest mom in the world.  I hope to have my Carter still and to be that mom who sends comforting smiles to a young mom across the room who is only in the early stages.  I hope to still be a mom who can hold her child and reassure him that things will be okay.  I don't care how hard it is or what new struggles come our way...even if my mind gets a little crazy sometimes.  I will keep fighting and enduring this pain and struggle just to have him with us.  

But to my friends and family, please bear with me during this tough time.  Please understand that there are no words that make it okay.  I'm not asking for a quick fix or reassurance.  I know most people don't understand what I am going through and I don't expect them to.  I just ask that even though others don't quite "get it" that they look past my doozies.  Forgive me for not remembering everything or not answering a question right away.  I will get past this again, like I have many times before.  Once it passes, I fully expect it to happen again.  This life never gets easier.


  1. Hi Sierra, Our son also has Mito and is 3. We were given your name recently through someone at Sacred Heart Early Steps and I thought I might reach out and introduce myself as someone from the area where you used to live that is walking a similar path. My much neglected blog is at I can definitely relate with much of what you are feeling. If you want to chat some time, message me and I will give you a call.