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Confessions Of A Special Needs Parent:

--Rising Above The Waves Of Grief--

One of the deepest truths I could express to someone who is not a special needs parent is: Grieving the losses is not incompatible with seeing the beauty and joy in this journey!

I often have gotten the feeling that outsiders looking into our life, may believe that we should have "moved on" from the disappointment or grief that flooded our hearts the day that Hailey was diagnosed with a rare genetic condition.

It's been 2 years since that day and let me tell you, the grief that washes over me from time to time now, is not even close to the same grief I felt back on that heart breaking day.

I think often people think because our daughter hasn't died, people come to the conclusion for themselves that we have nothing to truly grieve. As if death is the only circumstance in which grieving is a justified feeling to have. That when we have a hard day, we're just wallowing. That because we are blessed to wake up to our child every day, which is in fact a gift (one that I promise you...I don't ever let myself forget) that we should have nothing but gratitude and thankfulness. I'm here to debunk why that is a dangerous lie to believe, let alone spread, and why it is a narrow minded way of thinking that does more harm than you can possibly imagine. More importantly, I'm here to tell special needs parents like myself, that you do not need other people's permission to grieve what they do not understand!

Here's the honest to God truth...The grieving never ends.

When we lose a loved one, the impact of that loss never leaves us, not for a second. We just learn to live with the pain of that loss. The day that Hailey was diagnosed with STXBP1, we grieved the loss of the "healthy" child we thought we had. No, she didn't die, but the Hailey we thought she was and would be...did. Along with the list of dreams we had for her:

  • Riding bikes around the driveway with her big brothers.

  • Playing dress up in princess clothes.

  • Telling me about her first crush.

  • Sending her off to college to pursue her dream of being a teacher.

  • Ryan getting the honor of walking his baby girl down the aisle.

  • Getting a phone call at 2am someday that my grandbaby was on the way, and rushing out of bed to meet her at the hospital just to hold her hand and be there for her.

  • Knowing that one day when I take my last breath, I wouldn't have to worry about who will take care of my children because they would be grown adults and self sufficient.

Hear me when I say: grieving those losses doesn't mean that you love who your child is any less! It means that you are a real human being, who has real emotions like anyone else on the planet! In no circumstance should you, or does God want you, to feel guilt for processing the waves and storms. Just don't forget when the waves feel like they are sucking you under, that He never leaves us. He promise to always be with us.

We grieved the death of many dreams that day, and now years later... we're grieving the "waves of reality" that hit us unexpectedly over and over again. Things you can't possibly prepare yourself for. Revelations of your circumstances that make you want to curl up in a bawl and go numb because they feel too much to bare. For us some of those realities have been:

  • The day we realized we may need to move, despite not wanting too. Despite loving the house we've worked so hard to make our home. Despite the friendships we've all made here, especially our other children. That buying a bi-level home before knowing your daughter wasn't going to be walking, and the reality of carrying her up and down the stairs all day long, would not be ideal.

  • Realities that hit you like a freight train: when you read another special needs parent years ahead of you, is making arrangements for a group home placement for when she passes. Realizing you hadn't even thought of the haunting truth that one day you won't be here to take care of your child, and then what happens?

  • When you hear another special needs parent who's child had the same diagnosis as yours, talk about how much she misses the child she lost and grieves for everyday. Grasping that this diagnosis, the seizures, could very realistically take your child away from you forever.

IT IS OK to admit that 'this'...whatever your life looks like after D-Day (Diagnosis Day) that it isn't what you would have chosen for your child. No one would have. That's real talk. Grieving those losses doesn't mean that I believe that my child's life won't still be beautiful, joyful, or as full as I once dreamed for it to be.

It means that "full" will look differently than I once thought it would. It means that we have to adjust. It means that we have to shift our perspective. It means that while I didn't expect to be changing my daughters diapers for the rest of my life, I also didn't expect that this journey that can be so painful would also change our entire family from the inside out, for the better.

It wasn't just the dreams of who we thought Hailey would be, that died 2 years ago. The definition of 'happy' that I had been clinging too all my life, died too. I had this false idea that in order to be happy, life needed to be great, pain free, and it needed to make sense. I'm here to say, that if you believe life needs to be all those things in order for you to be happy-then you're missing the beauty in the journey my friend. Because life is absolutely not perfect, it's rarely ever pain free, and for most of us it hardly ever 'makes sense'. Yet, here I stand walking through the biggest storm of my life...raising a special needs child...and I believe with every bone in my body that life is more than good, it's BEAUTIFUL! Despite the pain. Despite the heartache. Despite the hard realities we face. And certainly despite the waves of grief that try to suck us under. Who we are today is forever changed because of our journey with having a daughter with special needs. I challenge you to allow God to use the trial you're facing to change who you are, for the better. Let him reveal purpose out of the pain. Give him the chance to teach you that there is joy and beauty after loss. I'm not underestimating the creativity of a God who can bring beauty from ashes and broken dreams, and you shouldn't either!