The Cost of Loving a Medically Fragile Child

We all have difficult moments.  Every human endures pain and heartache.  It's an unavoidable part of life.  For most of us, the pain that cuts the deepest and stings the longest is that felt from a loss of someone we love.  In many cases, losing a loved one changes us.  We are never quite the same again, sometimes for the better and sometimes for the worse.  All of us will experience the loss of a loved one.  None are preserved from that pain.  But I want to open the door into a world all are not familiar with.  It is unique; it is hard; it is painful.  It is the cost of loving a medically fragile child.

Some of the hardest losses to come to terms with are those involving children.  They are unexpected and go against nature.  Children aren't supposed to die!  But in my world, they do.  Often.  They go before they've lived.  They're gone before they're healed.  They are no longer here to live the long, bright future they had in front of them.  It's tragic and gut wrenching, every single time.  It honestly messes with our heads when a child dies.  Children are pure, innocent, and shouldn't suffer.  But they do, every day, and I see it.  Children in the special needs world are in and out of the hospital, constantly battling death.  They defy odds only to suddenly fall to a common illness.  It's unpredictable.  Many times it's sudden.  Every time it's not fair.  Friends in my special needs world are constantly grieving.  We lean on each other to get through the good times and to celebrate the small miracles and milestones the rest of the world doesn't understand or acknowledge.  We need each other to stay sane.  We build ridiculously strong friendships and bonds with our special needs families.  We become communities, and sometimes family.  But when one of our own loses a child, there are not words to describe the grief.  It's intense.  It's raw.  It's personal.  Many of us have had our child stare death in the face.  We have felt that pain, and barely escaped its attempt to consume us.  When one of our own loses a child we feel that loss almost as if we lost our own child.  The pain is too real to forget or deny.  We grieve deeply and it greatly affects our lives, routines, interactions with others, mental health and journey.  These grieving cycles happen much more frequently for special needs families than the average person.  We lose children regularly.  We know we'll lose more.  We cry today knowing tomorrow's loss may bring more tears.  Yet we continue to love.

Sometimes I wonder if the pain and loss is too much?  I wonder if I can escape it by denying my child's own fragile state and attempt to blend in with the typical world.  I ponder if my heart would be lightened by leaving my support groups, abandoning some special friendships, and turning a blind eye to those I know fighting battles in the hospital.  Would these actions ease my pain?  Would they improve my mental health and outlook on this worldly experience?  Perhaps.  But it is impossible.  Typical humans outside of the special needs world have these choices to make.  They can go to work and care for their families without encountering a medical emergency or need for medical intervention or advice on a daily basis.  They can experience daily life without needing to see sick children regularly.  They can ignore the fact there are children dying until they watch the news or see a GoFundMe request on social media.  I cannot.  That, unfortunately, is not my world.  Sick children are all around me.  They are at the doctors' offices where we spend a great deal of our time.  They are across the hall in the hospital fighting when we are there for treatments, ER visits, surgeries, and frequent hospital admissions.  They are in the surgery and radiology waiting rooms and in the line at the pharmacy. Even by abandoning my ties to support groups, I will still encounter sick children and loss.  And these support groups bring too much to our lives to leave.  Losses in my support groups may bring me pain, but without them how do I problem solve a tough medical situation with other highly intelligent special needs moms who can help us avoid an unnecessary trip to the hospital?  Without them, how do I find that cream that will help get rid of infection or granulation tissue on my son's G-tube site when he's allergic to everything?  Without them, how do I find alternatives to more medicines and procedures that can help with one of my son's dozens conditions?  Without them, how do I find social events that are emotionally and physically safe for my child and family to attend?  Without them, how do I socialize and feel accepted, loved, understood, and supported in a world that doesn't love, accept, understand or support my child or unique family?  To survive this special needs journey, I need a lifeline.  My support groups are my lifeline.  I need them and I need the people who belong to them that mean so much to me.  With that love comes pain.  A lot of it.

When people learn of the premature loss of a child in their community, most feel something ache in their hearts.  Many think, "Oh my.  What if that were MY child? I can't imagine."  It's true.  Once you become a parent you belong to a club that comes with a lot of feelings, including sad ones when another parent loses a child because we simply can't imagine that kind of loss.  But most of those typical people can quickly abandon the ache in their hearts by reading a funny meme on Facebook, watching an episode of their favorite show or by texting a friend.  And because it's painful, they can choose to avoid thinking about that sad incident again.  It's very different in the special needs world.  Yes, we too feel that ache in our hearts, but it's so much more than an ache.  It's an all consuming, deep, dark emotion that we feel beyond our hearts and well into our souls.  Yes, we too think, "What if that were MY child?" but the difference is, we CAN imagine.  And it doesn't stop there.  We think, "It could have been my child," "It should have been my child," "It almost was my child," or "When will it be my child?"  You see, parents in the special needs and medically fragile world are very familiar with grief.  We have all grieved very deeply for the loss of our children.  No, not all of us grieved the loss of their lives, but all of us grieved the loss of the life we thought they would have.  We have grieved the loss of skills, dreams, abilities, hope, milestones, rights of passage, experiences, and the future.  We have mourned the loss of our children in many ways.  Additionally, there are parents of the medically fragile who have had their children knocking on death's door.  Some of us have known that our children had a very real possibility of leaving this world depending on the following day's events.  Some parents have had to prepare funeral plans and make end of life choices for their children who eventually recovered.  To endure these things results in the initial phases of mourning the loss of a child's life.  To feel that degree of pain is life changing.  You never forget it.  It lives in your worst dreams and is awakened with any medical scare.  These parents are very familiar with the grief and potential devastation of losing a child, and that pain is felt whenever a fellow special needs parent experiences the worldly separation from their child.  We don't just grieve for the parents; we literally grieve WITH them.  We feel a very real degree of their pain.  And if you can't fight it off, that pain and grief consumes you as you are filled with the memories of your own child's fragile state or reminded of the fast-approaching fate of your own child.  Very suddenly, you may find yourself concurrently grieving the loss of a beloved child in your community and reliving your own grief cycles you have experienced over the years as a medically fragile parent. These feelings of grief are intense, disabling, confusing, and all-consuming.  It rocks your world.  It affects your work, your routines, your life at home, your ability to process reality and your general ability to live.  For some, it greatly affects their mental health and ability to cope.  For others, it can send them spiraling back to a dark place they had barely crawled out of.  People in the typical world can often avoid this deep, life-altering level of grief or pain when losing a child in their community.  But for those of us in the special needs and medically fragile world, this is our life.  When we finally begin to heal and cope, we lose another precious child in our special needs communities.  The grief never truly ends.

Why am I sharing these things?  Well, because I'm grieving with a lot of my friends.  I'm grieving the loss of a child I cared about, Atticus.  This beautiful boy was Jayson's age and they shared some similar conditions.  His mom and I have been friends in support groups and friends in real life.  His exit out of this world was quick and unexpected, and it has deeply affected me.  I loved this boy and I can't come to terms with the fact he is gone.  I fear what this could mean for Jayson and I'm scared to think of his future and how long I might be a part of it.  I hurt so very much for my friend, Atticus' mother.  I feel a very small portion of her pain and it kills me.  I'm grieving this loss just after the loss of Lily and just before the loss of Antonio, two other very loved children in our special needs community.  These losses are all local; of course there are more in my more extended networks and communities.  This isn't the first time I've deeply grieved the loss of a medically fragile child, and one of the hardest things to accept is that it won't be the last.  I want others to understand my grief and the grief of my friends.  This special needs journey is so very difficult, and loss is one of the many reasons why.  Many of us are constantly grieving.  That doesn't mean we are depressed or that we aren't grateful.  It means our world is full of pain and we are working through it.  We need your hugs, your prayers, your understanding.  And sometimes, we need you to cry with us.  We need you to understand we are mourning and grieving the losses of amazing, phenomenal, special children who were too good for this world.  We need you to ask us about them and help us remember and honor them.  We want you to notice their absence, even if you didn't know them and their larger-than-life spirits.  They have changed our lives and we want their existence to change the world.  

After reading blog posts like this one, it is common to feel the sudden desire to hold your own children a little tighter.  Go ahead.  Squeeze them tight.  But if you can, please do just one more thing?  Think of a family you know who is on this special needs and/or medically fragile journey and decide on one thing to do to help lift their burden.  Come by just to share a hug.  Send a sweet encouraging message.  Serve them in some way or steal one of them away for an intimate chat.  Let them know you are aware of their pain and their intense love for their special child.  And if the family has lost a child, please talk about their child and the impact they had on this world.  Do something special to honor them and spread kindness in their name.  Don't let it ever be forgotten that they lived and they were loved.
Atticus, Lily and Antonio- you are LOVED and you will never be forgotten.

Atticus Lawrence Lang