She

My notifications buzzed, a text. Pictures from my daughter. She’s been spending the summer finding her voice behind a camera’s lens. I love to see her thoughts. As I scrolled, there was my niece, my first baby. They’re at the beach. I paused and grinned at the beauty that is she. And I thought…

I have lived through so. many. of her moments.

                                                                             Her stages.

                                                Her periods.

Her right nows.

Like the one where she refused to eat anything but soft boiled eggs, feeding her was joyous during that time. And when she couldn’t say her t’s, so every truck that we passed she would say “look tia, a fuck”, she didn’t even notice my laughter.

And at that moment, what I was seeing… I just hope that she can see that. I know that I, as a Black woman, went through this period where I felt like maybe the universe had gotten it wrong. There was a time when, You’re pretty for a Black girl was actually a compliment that I would accept. I hadn’t quite figured out what to do with all of the… difference that I’d been given, it takes a while for many brown girls to realize the uniqueness that is your presentation to the world is actually a stunningly beautiful gift, an expression of the divine herself. In fact, you feel like you should probably hide it. Smother it. Suppress it. Smooth it’s corners. Soften it. Turn the saturation down on its brilliance. and the messages from the world reinforce that.

Until one glorious morning, you awaken.

You look at the thickness of your lips, the shade of your brown, the kink of your hair and a smile starts to form at the corners of that enviable pout as you nod your head to the universe, your mother, and your father in thanks for the creation that you see before you. I hope that she has experienced that day.

I hope that on that day, as she stared at those braids in the mirror until her vision lost focus and her mind began to drift, she imagined those braids in a cute bun, a few strands untucked framing the striking shape of her face, the gift of our ancestors. I hope she heard the noise in the distance that blew into her mind to snatch her train of thought,

Dr. Jones, we need you in here.

Then, the cry of the orphaned toddler that called the Kenyan orphanage that she was spending the summer volunteering at home, who now claimed her as his mama.

Did she feel the brush of the devotion of motherhood across her heart as she imagined herself kneeling down to enfold him in her love? I hope that as her eyes traced the outline of her mouth, she grinned as she imagined herself being brave enough to taste langsat and durian as she weaved through the markets on the streets of Phuket, beaming that at 18 she was able to save and send herself to Thailand. I hope that as she gazed at herself, and she wiped her eyes in disbelief, and rested her hands on her cheeks and squeezed to try to contain the joy  of the possibilities, I hope that she saw that her life is a literal nebulous cloud of opportunity, the truth of which is is entirely up to her.

You are the divine experiencing itself in one of numberless forms. You are quite literally God’s imagination. Whatever you want is yours and everything that you are is perfection.

 

Infinite Love

“…there are things that you will only be able to learn by the weakest among us. And when you snuff them out, you are the one that loses.” ~Gianna Jessen

November 8th two thousand and twelve… I caught a glimpse into the infinite that is love… and I now know with every fiber that it is the only reason for our existence. To love and be loved. Not duty. Not honor. Knowledge. Responsibility. No. On November 8th two thousand and twelve I met the ferociousness that drives us all. It filled me and radiated from my fingertips. And it was love.

That day started like any other not too worrisome Karsten sick day. First thing in the morning I  phoned the pediatrician. “Good morning Children’s Primary Care”… their voices soothe me in times of uncertainty.

  A sigh of relief and a tiny pause to express my gratitude as I thought.

 They know me, they know Karsten, I know them, they fit me in. I can count on them. Thank you.

“Dr. Robbins is busy till the afternoon we can fit you in sooner with someone else if you’d like”…

                                  His fever is only 101.

and I responded “that’s ok I’ll wait. Doctor Robbins knows him.” Fast forward a few hours. We get dressed. One last temp before we’re out the door. It’s staying steady at 101, I feel relieved. We make it to the appointment. I’m giving him water in the lobby. His breathing is a little noisy. He’s worn out from the fever and our sleepless night. They quickly get me a room so that we can have privacy. I pick him up and pat on his little chest as we wait. Karsten drifted off to sleep. The doctor came in and listened in his always attentive and calm way. He listened as I told him that we were up all night and Karsten was sweating all night. How his feet were cold and I thought that he had the flu because I had a horrible flu with the same symptoms a couple of weeks before. He replied “I’m not terribly worried, his vitals don’t look too concerning. His heart rate is elevated, but that could be because he’s sick……………….the only thing concerning me is how sleepy he is. I know him and he’s usually very alert.

                       My heart feels like it stops and then restarts twenty times faster.

“Well he was awake all night so I think he’s just sleepy”

    I started to justify. Why am I justifying?

Looking back I think I just didn’t want anything to be wrong. Not another thing. Not again. Denial never keeps me from getting the job done but it does creep in with fear when I can feel in my spirit that something is brewing. So when Dr. Robbins told me “I’m probably ruining your night. And it’ll probably be nothing. But just in case, I want you to go to Rady’s and have some labs drawn” I knew what I had to do…

                    ” I didn’t pack for the hospital, can I go home and get his things”?

“Yes just go sooner rather than later”. I pack. We make the drive. The triage nurse is looking him over and asks “is his belly always that distended”? Time slows. down…. What? Thinking back it feels like it took me an eternity to look down. I can’t count the questions that raced through my mind as I looked down to see what he was seeing.

              “What do you mean his belly is distended”?

                                         “Is his belly distended”?….

                                             “Dr. Robbins didn’t mention his belly”?….

                                                  “I didn’t notice his belly”?……

                                     “or did I”?

I looked down and there it was. And that is when the replay in my mind hits fast forward. They take me back. help them pick him up. he’s on a table limp. yell for RT. ask me what he ate. they move him to another room. people SURROUNDING him. I can’t even count them. Karsten looks so cute in his jammies and bare feet. God I love him. talking about blood gas. and intubate. RT asking over and over how old he is…..

He’s six years old”, I answer.

I don’t think that they knew that I was there because all of a sudden a doctor swirled around and filled the void between me. and him. Bone of my bones and flesh of my flesh. My love. She mentioned putting him on a ventilator and, for the moment, the last bit of my strength was used up.

And that’s when the door opened and I met it. Infinite love. I know that it’s in us all of the time, but at that moment it was like the trap door that only allows love to trickle out between its hinges (probably for good reason) exploded and I had access to it all. All of the love that is, that ever was, and ever shall be. All of the love that anyone in the universe thought was theirs at that moment was mine and I was feeling it for my child. It filled me. It was so strong it could have given me the strength to tear that whole building down, or in a millisecond could have spontaneously squashed my heart. I’m convinced it could have lifted me right off of the ground and left me to levitate right there in the emergency room… the forces of gravity did not apply against what I was feeling. I wanted out. Now! Rewind time. Not again. Why is this happening. Why him. Kill me now. Take me instead. I don’t care because what I’m feeling is annihilating me anyway. My heart is crushed.

Days before this we got the keys to the house that was made for him. and now there I was sitting on a brick wall on the side of the emergency room giving Karsten’s history through streams of tears to a medical student and an intern as my baby lay down the hallway

                                                                                                  and his life lay in the balance.

I wondered to myself… Is life bittersweet or just bitter? Where is the justice in this happening to Karsten for the second time? He IS innocence. WHY? Is there a lesson in this? Part of me hoped not. That would be a piercing pill to swallow that my son was in this state for a lesson. My sheer will wouldn’t allow a testimony to someone else as a reason to justify his suffering.

                                                          Breathe.

We spent a month there. Day by day he recovered. Day by day he surprised his doctors. Not every day was tear filled. My baby was fighting to come back to me. One day I’ll tell you the story of Maria… the sixty year old woman with cerebral palsy that I met downstairs in McDonald’s on Karsten’s second day there. She felt like a guide and I felt like I don’t have all of the answers but nothing is by chance.

We are both mostly recovered. His lungs give him some trouble from time to time.

                                                                                    And my heart gives me some as well.

I don’t have any profound wisdom that I gained from that experience. I do know something more of the depth, breadth, and infiniteness of the love that we are capable of. I feel more. It surprises me that feeling more was even a possibility.

I fight not to fear more.

The one thing I know even more than ever is that love is the only thing that matters. Its been almost a year. Now I can talk about it. and now I’m revisiting that experience to sift through the rubble it left behind to try to find closure. I want to move on with my whole self, my whole heart, and not just the fractured pieces that are left after the second time that I almost lost my son.

My mother once told me that my great grandmother’s words were life is grand as long as you don’t weaken and I know them to be true. As bitter as life and love are they are absolutely just as sweet. And it is more than worth it to me to move on and risk with my whole heart to taste that sweetness again.

                       …there are things that you will only be able to learn by the weakest among us.

Patience. Acceptance. Appreciation. Perseverance….. Love.

My Little Conundrum

co-nun-drum            1: an intricate and difficult problem.
                                                                         2 : a question or problem having only a conjectural answer. 
                              con-jec-tur-e               : a conclusion deduced by surmise or guesswork. 
                       surmise                          : a thought or idea based on scanty evidence.



I have never been the type of person that enjoyed a good riddle. No riddles in any form. Not chess… sudoku… I don’t even enjoy crossword puzzles. Riddles are not and never have been my “thing“. In grade school I even hated analogies on tests.


So how is it that God saw something in me that I never saw a glimmer of in myself? I have been given, blessed with, had bestowed upon me…the ultimate riddle. And his name is Karsten. He is more than a riddle. More than an enigma.  He is a labyrinth. The journey to help him may be barely escapable, even for me the one carrying him along the path. But, the thought of helping him…of saving him from any pain or discomfort or struggle that I can is incomparable, it compels me. 


Nothing that I feel is any different than any parent that loves their child. The difference is that I’m able to look behind the curtain. I know the feeling of almost losing my child. The marker in my mind that separates my life into: before Karsten was sick, and after… and the fear that calls those emotions back to me every time that he is sick again. I’ve felt it so often that I can call on that emotion at will. Just like thinking of one of the funniest stories of my life makes me laugh. As I type, if I think about it………..yup, there it is. I experience daily what other parents are able to put aside and forget about… lock away in a box labeled TRAGEDY and open only in case of emergency.


This special needs life is sink or swim, with the consequences of sinking just as dire as they would be to stop treading water in the middle of the ocean. There’s no instruction manual. No help at first, until you find it. Hands down the most difficult thing that I have ever done, and yet I can’t give up. I won’t give up. I told a friend recently that love makes no sense… to do what I do is insanity… to give your life up to try to save another. But we do it everyday. Humans do it daily, consistently, over and over again…and her response to me…”it’s God’s insurance policy”. And there it is…four simple words that sum it up completely.

 My quest for his happiness and comfort defies logic. He is my El Dorado. My Atlantis. My one great adventure. I would travel to the ends of the earth… risk death and destruction…to help my son, my conundrum, one of the great love’s of my life.


This blog is about him, my little conundrum. But it’s not for him. It’s for others. People just starting out on this journey. People who know someone with a special needs child or adult. For people that pass a special needs person on the street. It’s my knowledge, as limited as it is…it’s my effort to make the road a little easier for the next person. 

Though, I pray that no one follows in my footsteps…I know that they will. So in advance, this is for you, and for anyone that might know you… who can bring you to this place to make it easier in any small way for the road that you’re about to travel. I don’t intend for this to be a solution. Every one of these children is so different that it can’t be…it’s just a stepping stone to help you on your way.