Around five months old Nemer started his journey to Doctors’ clinics.
The words out from the neurologist’s mouth were : the MRI showed he has a diagnosis which will cause milestones delay. She said that in a cold tone as if she were a sales person asking me how are you without caring to hear the answer.
I didn’t know how to process the small information she gave me , or what to ask.
She left me with Nemer on my lap without much explanation… she left me with a brain freeze.
That whole day I had that stupid brain freeze, I hated myself for not being able to develop a thought or feel an emotion.
It hit me at night..
All the whys.. the questions..the reasons..the blaming..the past..the future..Nemer’s future..the expectations..the dreams!! All that tornado of thoughts kept lifting and throwing me hard on the floor, for weeks and months.
The journey to clinics started.
lots of appointments, tests, home visits. Lots of professional opinions “most of them pessimistic ,some of them optimistic “, lots of: he will, or he wont. He might, he might not”
Professional opinions were : It might have happened during the fifth or sixth month of pregnancy, the reason might be genetic or not.
Or, it could be the long and tiring delivery, especially that Nemer didn’t breathe instantly and had a heart murmur.
The neurologist confused me the most. Each time she would assure me that one of the opinions is the right one. Which didn’t make any sense to me. So I asked for Nemer to be referred to another neurologist.
The last opinion was from a nice Doctor “the head of pediatrics” of Scarborough General Hospital. He said that the fetus is already in a low oxygen environment, so once a baby is born it is normal to not breathe for 20 minutes without having a brain damage. So the best explanation for Nemer’s diagnosis is it happened during early months of pregnancy.
For me whatever the reason is I end up blaming myself somehow. I really loved being pregnant, but now I have that feeling that I wasn’t the perfect environment for Nemer. However, at the end what’s important is not the reason, it’s doing the best for Nemer.
I was told that due to the 23 hours labor and the conditions the baby was born at, my gynecologist was supposed to refer Nemer to a follow up clinic just to keep an eye on him, which didn’t happen.
So, I had to run around, make all the research, ask all the questions, and ask for important referrals. Of-course that would include the crazy long waiting list that take months for appointments,test results such as MRI’s,EEG’s, genetic study, and lots of other services.
When pregnant, I used to put my hand on my tummy and whisper to my baby what a wonderful world I’m going to create for him. How eager I am to watch him going through the milestones, from smiling, to holding my finger, to crawling, to messing up the house with toys, to running after him so he wont fall down the stairs, to reading him books, to hearing his baby cute reading, to playing with him, to watching him having his first bike ride, to covering his face with food, to saying mama, to hugging mama,to.., and to..”
But now it’s just those unkindly whispers in my ears of worries for him, fear of a vague future, blames of not doing enough, and wondering if we’ll ever live together what we once whispered to each other. Now, it’s carrying him from a specialist to another, from an appointment to another. Now, it’s teaching him, not playing with him.
At one particular moment, I was in my room combing my hair, exploring my faded eyes in the mirror,when his words screamed in my ears: He is your Job now. You will be his teacher. You will be his trainer. You will be strong for him.
The words of Nemer’s grandfather, my father-in-low. He said that to me in the last few weeks of his life, fighting cancer.
Back then I didn’t take in his words. But at that particular moment they unfroze my brain, put aside all the tiring questions.
I accepted the fact, I loved Nemer more, I held him close and breathed in who he is, who he will be, and what will he give. And no matter what, he will be my life’s miracle.
I whispered to him : I will create a wonderful world for you, habeebi.