There’s something that all of my fellow special needs parents should be used to…..death. But, trust me, none of us are. I mean, how can anyone be used to death? Does anyone truly become desensitized to the loss of a life? The loss of a child’s life? I know it’s something I will never grow accustomed to.
There’s nothing like the utter despair that fills your heart when you open social media only to see that another child passed away the night before. A child that you ‘followed’. A child you rooted for. A child whose story brought you joyous and sad tears. A child whose pictures brought a smile to your face. A child and family that you ‘knew’, felt connected to – even if never meeting in person.
When Parker was alive these deaths hit like a ton of bricks. Most of us in the ‘cephaly’ community have been told our children have a limited life expectancy – it differs with each child and each situation. So when you read of another child becoming an angel you can’t help but cry – for the loss, the heartache of the family, for your own child. After all, you’ve been told this is your future too, right? Even if it’s not spoken, as a parent who has been told your child will die before you, you grieve. You grieve from that day forward. Not always actively. But the moment another angel earns their wings, you grieve again with the fact that your’s might be next. You can only imagine what the parents are feeling – even though deep inside you’ve tried to prepare yourself. You send condolences and the words flow so easily. You say things you’ve always thought were the ‘best’ things to say. And you mourn the loss and celebrate the child’s life along side the rest of the community.
Parker’s decline was fast, but noticeable, so she was put on hospice and I had the ability to ‘prepare’ myself for what our future held. I say ‘prepare’, because there’s no way to ever prepare yourself to say goodbye to your child for the very last time. It’s truly a gift and a curse at the same time to know your child is dying. I got the luxury of never leaving her side, holding her at all times, singing to her, memorizing every inch of her, take our first (and last) set of family pictures, and overall cherishing every moment I had with her. (Note: not that I didn’t before this, things are just different in an ‘end of life’ situation.) The curse is that it truly is this awful countdown. It’s a ‘hold your breathe every time she holds her’s’ situation. It’s torture to watch your child’s body breakdown – their organs failing. And even harder to have your child unresponsive and just hoping and praying they’re still hearing your words of comfort and peace. And through this all I tried to ‘prepare’ my heart for the inevitable. I even knew the morning of October 20th that it was going to be her last day – knew it deep in my soul. But at 7pm that day, when she took her final breath, there’s was nothing that could have ‘prepared’ my heart for the pain it was to feel. A pain, that still has the ability to physically hurt my chest and make it so hard to breath. An emptiness your soul automatically knows and despises. Nothing can ‘prepare’ you for the loss of your own child.
So these deaths, after losing my own child, still hit me like a ton of bricks – just now I don’t feel like I’m being slapped with reality, I feel like another brick is being laid down upon me, in the pile I’ve accumulated. Now I cry for the reality that the family is facing. Now I cry because Parker gained another friend in Heaven. Because my heart instantly relates to and relives the overwhelming loss the parents are feeling. And now I really, really struggle with the words to say. I’ve come to the conclusion, it’s because there aren’t any. Because no words made me ‘feel better’ after Parker died, there were only the words that stung. And the words that did manage to help weren’t words at all, but hugs, embraces, and tears. If only I could actually send a hug through social media, I would – attached to the simple phrase, ‘I’m sorry’.
These deaths also spark a new feeling in me since losing my own child – apprehension. For the journey the parents are about to face. The journey of grief. The realization that life does have to go on and how they’re going to make that happen. The comforting of the angel’s siblings, if there are any. The ability to grieve in their own healthy way. And the fact that there’s no time limit on their grief. I fear for their hearts the first time a stranger asks them how many children they have and the endless times the words will be lacking when trying to delicately explain their situation. For there is a fine line, a balancing act for bereaved parents. We truly live in two different worlds. One is the past – in our memories, the lives we once had, in all that we had, all that we lost, and all that we thought our futures were to be. The other is now, the present – truly enjoying life the way our child would want us to, keeping our child’s memory alive, and rejoicing in the fact that we will see our children again (where ever we feel that may be).
Every special needs child changes the world – I truly feel this way. They have the ability to live and love with a pure, nonjudgmental heart. To see only the good in every person and situation. To be happy and bright no matter the challenges they face each day. To be the student and the teacher every day.
Below are some children who left us too soon. They continue to change the hearts of others, to change the world even as angels. Some joined the angels before Parker and some after, but all of them (and their parents) hold a special place in my heart.