"at home"

i'm home.

my home, Illinois.

but i don't feel at home.  there isn't anywhere that feels like home anymore, it seems.

home was when i was holding my sweet boy in my arms.

home was when i was kissing his sweet face and taking care of his every need.

i don't feel at home in my own skin anymore.  there is a constant feeling of being lost---like i'm missing something, something important and necessary to survive.  something required in order for me to navigate my way through this life.

i am missing something.

i will forever be missing a most precious part of me, the part of me i was most comfortable with and treasured the most.  the part of me that was home.

i miss my beautiful boy.

i just do.

i am learning to find my way, blindly without him.

i am lost, but i have faith in the path that i am on.  i have faith in the destination it will eventually lead me to.

i have faith because i wouldn't know what to do without it.

i have faith because i need it.

i have faith.

in the last week i have gotten 2 phone calls that, if i had received them just 6 months earlier, would have made me so happy.

it seems as if all the opportunities we had been waiting for, been wishing for, are now becoming available to us.

my beautiful boy had been on the waiting list for the Division of Services for People With Disabilities for 5 years, almost his entire life.  on tuesday i received a phone call that there was great news!  funding has now become available and Connor can start receiving help!

..................................................

 

today i answered the phone to a very nice lady from an organization called SWAN (Syndromes Without A Name).  she was very excited to inform me that Connor was chosen for the exome sequencing i had entered to win several months ago.  this phone call would have meant the world to me if my sweet boy was still alive!  this kind of genetic testing is very expensive and was beyond the realm of possibilities for us to pay for ourselves.  this could have been the testing that lead to answers for my beautiful boy.  this could have been a possible end to the endless frustration of not knowing.  this could have helped my son.

but i cannot live my life wondering what could have been.  i cannot exist in that space of 'what if' or 'why me', or especially 'why him???'

there will never be an answer for that question that i will understand.

i don't understand any of it, but i trust in the divine plan for all of it.

i choose to live in faith, and i am trying my very hardest to embrace and accept what is instead of what could have been.

i am still here, still breathing, still surviving.

i am still living, still loving, still caring for my sweet girl.

i do still feel my sweet boy around me, can still feel his love.

i don't understand God's timing or reasons, but i do have faith in His plan.

and while i may not feel at home ever again, it is nice to look out the window and see countless fireflies flickering in the night.

<3