One day when Andy was still with us, my husband’s aunt called to check in. I answered the phone. She asked me how the baby was doing, and I enthusiastically said, “He’s great!” And, to me, he was. He wasn’t hospitalized. He wasn’t sick, and his vital statistics were stable. His feeding tube was providing him with good nutrition. He was smiling, laughing and watching his favorite DVD. He was here with me.
The aunt happily responded, “Wonderful! Does that mean he’s better?” To which I replied, “No, it means that he’s not dead.”
Flustered, she hung up the phone.
As I put down the receiver, I hoped that she didn’t think I was being flippant or mean. I knew that she didn’t understand what it meant for Andy to have the most severe type of spinal muscular atrophy (SMA), but I didn’t know how to verbalize the precarious and cruel nature of the disease. She wasn’t here to see how fast he was being robbed of his ability to move, cry, swallow, and breathe. She’s didn’t know how smart and aware (and wonderful) he was. She didn’t realize that, without a cure or meaningful treatment, Andy wouldn’t “get better.” That a common cold could kill him. That every day that he woke up, smiling and softly cooing, was a small miracle. That I cherished each second I had with him in my arms, knowing that any day could be his last.
That dreaded day came just weeks later.
My husband and I stood next to our son’s hospital bed in the pediatric intensive care unit. He was struggling, and we would have done anything to save him. Life without Andy was unimaginable. But, he looked at us with eyes so weary, and we knew in our hearts that he no longer wanted to fight. We kissed him all over and told him that we would love him forever, then we gave him permission to go. And so he did, taking a piece of my heart with him. Letting him go was the hardest thing I have ever done, but I knew then – and still believe now – it was the right thing to do.
But, how do I explain that? How do I convey the thoughts, feelings, and beliefs behind the decisions we made for our son? What words can adequately describe that look in his eyes, which has been burned into my soul? How can I convince someone who thinks we gave up hope that we never did – and still haven’t? How can I prove that, despite how hard I fought the disease, the outcome wasn’t really up to me? More importantly, why should I have to justify anything?
I think it’s a matter of perspective.
It’s not always easy to find friends that really understand you, especially after you have lost a child. Over the past two years, I’ve been very lucky to make several close friends in the SMA community. One of them is a woman with Type 3 SMA, a much milder form than Andy’s but degenerative nonetheless.
My friend is very strong, but sometimes I fear that she doesn’t really believe it. She sees how SMA has changed her – how she can’t walk long distances any more, how she is prone to falling, how she will soon have to depend on a wheelchair. She is afraid that won’t be able to be as active in her sons’ lives as other mothers. She doesn’t want to let them down now or become a burden to them in the future.
I see something different when I look at my friend. I see an accomplished woman who won’t be limited or defined by a disability. When she falls, she always pulls herself back up, no matter how hard she must work or how long it may take. She is a woman who fights to live as she chooses. Who shows unbelievable strength of heart every day. Who also shares a bond with my son, although she never met him, because she knows how it feels to have SMA. Who encourages her sons to dream and who inspires the dreams of an entire community.
Sometimes, when my friend feels down, she calls me. She always apologizes to me before she shares her feelings, saying that her experience and pain due to SMA pale in comparison to mine. That, while SMA has taken from her, it hasn’t taken a life. It hasn’t taken her child. That she should feel lucky, even though she doesn’t.
I always tell her the same thing. I don’t have SMA, and I can’t imagine living with it. I don’t feel the pain, anger and frustration of the disease as she does – SMA hurts me in different ways – but I unequivocally believe that she is entitled to those feelings. While there may be others with more severe symptoms or sadder stories, that doesn’t negate her experience. It doesn’t take away her grief over loss of ability or her fear of the unknown. As a friend, I will always listen, and I will always cheer her on. And, I know that she’ll be there for me when I need her.
You see, we’re fighting the same demon, just from two very distinct perspectives.
The other day another friend posted a link on Facebook about a very sick child and asked for prayers for him and his family. Thinking of Andy and how I had similarly asked for the prayers of strangers while he was fighting for his life two years ago, I clicked on the link and began to read about Baby Tripp and his battle with Junctional Epidermolysis Bullosa (EB). Yet another disease that I have never heard of. Yet another family blind-sided by an unbelievable diagnosis. Yet another child on the brink of death.
Tripp’s genetic condition causes a blisters or lacerations to form whenever there is friction or trauma to his skin or membranes. This means that he is covered from head to toe, inside and out, with raw sores and scabs. This two year old baby endures unfathomable pain every day – with every movement – and, not unlike my son, he still smiles.
Tears streamed down my face as I read a post by Tripp’s mother on her blog at http://randycourtneytripproth.blogspot.com/. In it, she recounts how Tripp’s doctors have said that his condition has worsened to the point where nothing else can be done, short of pain management. She writes, “I have known since Tripp was about 2-3 months old that I should expect to outlive him. And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would. I could not even begin to count or explain the amount of emotions that have gone through my body through these past years… wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn’t have to suffer anymore. And as many times as these emotions have [been] felt- there is no way I could begin to explain what I am feeling at this point.”
As I read her words, I recognized the conflict that she was feeling. I remembered Andy’s last moments, filled with a confusing mix of relief for him and despair for me. Then, I looked up at my family room wall to see the pictures of my beautiful son, with his skin so smooth, and I knew that I never had to helplessly watch my child suffer to the degree that she has. I once thought, from under my veil of grief, that losing Andy was the worst thing that could happen to us. After learning Tripp’s story, I wasn’t so sure.
Tripp’s mother can’t hold her son, as I held mine, without fear of hurting him. Even the simplest acts of care, like diaper changes and baths, are tortuous for him. She must be a witness to the unthinkable pain that her son endures, without being able to provide him lasting relief or comfort. She has suffered in ways that I will never truly understand.
I may have started walking ahead of her on this dark and winding path to bereavement, but I have no perspective of where she’s going or where she’s been.
It all depends on how we look at things, and not on how things are in themselves. The least of things with a meaning is worth more in life than the greatest of things without it. ~Carl Jung
I think that it is a true challenge to maintain perspective in the face of a nightmarish scenario. For me, it was coping with Andy’s diagnosis and then accepting his death. For my friend, it is coming to terms with her own limitations and rediscovering her inner strength. For Tripp’s mom, perhaps, it is finding hope, purpose and peace as her son moves on to the next phase of his journey – whatever that may be. All of us are in different places, facing different obstacles with different perspectives of them.
But, one thing is common to all of our experiences – we will do the best we can, especially for our children, no matter the circumstance. We can no more control the length of our time here on earth than we can control the genes that combined to make us – or our kids – who we are. But, we can embrace fully the life we have been given and love completely those who share it with us. We can learn how to adapt and adjust. We can find our way in an unfamiliar landscape. We can pick ourselves up when we fall. We can fight for what we believe.
And, if ever we have to let go of someone we love, we can understand that this is not the same thing as giving up or losing hope. It’s only a matter of perspective.