Grieving when you have a special needs child.

Grief blows.

It just does.

*huge sigh*

The moment Makily was diagnosed with ES my grieving process began. LITERALLY that second. It was like a part of WHO I WAS was ripped from my soul. Left empty. A hole in who I am as a person....and there is NOTHING that can fill that hole. Sometimes I feel like it's just gaping open, bleeding and I have no idea how to close it.

As long as it is open I am tortured by it.

I'm tortured by the things in my life that I cant change.

I recognized the part that was ripped from me immediately. It was the part of me that was carefree. The part of me that didn't TRULY understand the emotional pain of a loss so great.

A loss of EVERY SINGLE dream I had made for my child....they were lost in an instant.

EVERY. SINGLE. ONE.

None of my dreams for Makily would ever come to fruition.

I was even uncertain if I would see her celebrate her first birthday.

That's heavy.

My rose colored glasses turned black almost instantly. I remember the angry feeling, my arms crossed over my chest, my legs crossed while I nervously kicked my foot in a rhythm with how fast my heart was suddenly pounding. It felt as though an elephant was sitting on my chest and I could barely breathe. The nausea would come in waves between my sobs. The doctor continued to speak and I just kept kicking my foot wanting to go back in time. To a time when my life was "perfect". When I was pregnant and happier than I had ever been. Then KNOWING I could NEVER go back, no matter how much I ached to. I remember being angry so many people were in the room to witness the most devastating moment of my life. I remember thinking they must all feel so sorry for us. I would have if I were in their shoes.
Then I realized at the end of the day they could go home and turn it off......I could never just go home again.

Ever.

We all go through the stages of grief differently. Some stages I skipped. Some I have wallowed in, especially anger. I cant say that before Makily I believe I was an angry person, now sometimes I realize I am fighting the anger back more than I would like to admit. The anger of seeing someone with a normal child that should never have had children. The anger of seeing things come so easily to some while I struggle to figure out a way to help Makily swallow more efficiently so her clothes arent drenched. And okay, how about this.....if I'm being honest I'd like her to swallow better so people don't stare at her at age seven, wearing a bib. So people are more readily accepting of her. So people won't hesistate to pick her up, sit next to her and love her like she deserves to be loved. So people will realize that their showing HER attention isn't some wonderful thing THEY did but that they will realize THEY ARE PRIVILIDGED to even be in her presence much less know her.

I remember feeling alone. Segregated, DIFFERENT. Outcasted. Truth be told I've never totally felt like I TRULY fit anywhere. So THIS information was the NAIL in the coffin for my ever feeling like I fit.

How can I fit?

Where can I fit?

Then I found a place. It was with all the other special needs parents.....all the parents that felt that SAME struggle with grief. The parents that don't look too far down the road because it's too scary. I try not to think past the next week....month with Makily. If I look at five years from now I feel anxiety nearly take over me and even TYPING about it makes my heart pound.

In my search for people to "fit" with I reconnected with my friend Carrie. We had gone to High School together and her son was born with cerebral palsy. Then she passed away in one of the most shocking, horrifying and just senseless ways. Leaving Sean to try to pick up the peices and do it all on his own.

I stood back and I asked why.

I have developed so many relationships with other families of special needs children. I feel a sense of understanding and belonging I cant find elsewhere. On the other hand I have found that when I'm too close, and something negative happens to a child or family I have connected to that it sends me into such sadness. I want to fix it for them. Take away the agony they are feeling. Someone told me recently that I feel things TOO MUCH. I think this is true. I do. My emotions are stronger and more pronounced than anyone I know. I'm not sure why. I have always been this way. Allen jokes that nobody cries alone when I am around and that is the GOD'S HONEST TRUTH.

I remember sitting on my friend TJ's bed BAWLING with my friend Latena that had just lost her baby to a premature birth. She and I sifted through photos, hair clippings, a pillow and all the mementos that she had hoarded in the desperate attempt to always remember her first child. Why did this have to happen to her?

I have seen many Emanuel Syndrome babies and children die suddenly. Some struggling for months before their FIGHTING SPIRIT is not enough to win over their failing body that they were born in. Some of them are happy and playing, then dead the next morning. Their parents devastated to walk in and find their baby they have watched fight for years....gone. Another hole left that can never be filled.

A couple of years ago I posted about meeting a family that had a son born with Trisomy 18, little Caleb. They live in Ocala. Local. I met Caleb aka MIGHTY MOUSE and my breath was taken away. I remember holding him and realizing what a MOMENT that was for me. He was still a tiny guy and the way he breathed BROUGHT ME BACK to when Makily was his age. He sounded identical to her. I wanted to wave a magic wand and fix what was wrong with his breathing. I wanted to grab Jeannette in my arms and tell her she was going to get through it. I wanted to tell her all the things I wished someone would have grabbed me and told me when Makily was that age. I didnt though. I knew those things I wanted to tell her would only come with time. Instead I talked to the angel laying in my arms. I told him how perfect and amazing he was. I cherish that moment so much now. Caleb passed away August 29, 2011....a week ago today. The paper did an article and photos as they have followed his story since birth. I sat looking at the photos and feeling such sadness for this family. It brought me back to the times I've sat staring at Makily looking much like sweet Caleb did in the photos. Skin pale, eyes closed to slits, tube down the throat, machines beeping, IVs running, tethered to more wires than I could count.......wondering when I would be able to say ENOUGH is enough. Dreading the moment that Makily's body would decide enough was enough.

I will shamefully admit I had kept myself at arms length with them. I was afraid. Afraid Caleb would pass and that I couldn't handle it. Afraid it would overwhelm me with grief and uncertainty.....for us....for Makily. Afraid I would be unable to comfort Jeannette, his mother who lovingly and graciously took care of this angel for 29 months. She would have done it for 100 years....happily. Jeannette who's faith NEVER seemed to have wavered. Even in the times when Caleb lay sick and moaning in pain. Jeannette never questioned her faith. I admired that about her. I still do.

So my lesson learned here is this. I can't let my fear and grief cripple me. I can't at the end of the day say it was too hard so I sat down and watched from the sidelines. I can't hide from life and living. The times I am happiest is when I am putting myself out there. When I am taking a chance that YES I may get hurt but the experiences before the hurt outweighed the hurt, and that I have become a better person because of them. I have made decisions in my life I never would have expected to make since Makily was born. Some good, some bad, some made because I desperately have been looking for years to fill that "hole". I'm not perfect. Far from it. In fact some days I feel like I've been rolled in the mud and drug through a knot hole and that I'm desperately trying to wipe myself off........

I am trying to become a better person. This doesn't mean I am perfect or that I think I am better than anyone else. Just means I want to better me.....for Allen for Makily for Jakob.....and eys for myself too.

Dearest Caleb,

Mouse, you touched my life in ways that most adults would never be able to. YOU little one have taught me not to live in fear anymore. To live life to the fullest. To love without reservation, to experience EVERYTHING and to strive to be as perfect as your spirit is. Fly high Mighty Mouse, you are one of my hero's and I will never forget you.

Jeannette and Steven,

We love you so much and if there is ANYTHING we can do to lessen the load on your backs right now, say the word. I will never stop wishing for that magic wand to wave away all the pain you are feeling. Bless you both. Know that you were EXACTLY what Caleb needed and he was exactly what you needed.

In LOVING memory of

Caleb Nathaniel Adamyk

March 20, 2009 - August 29, 2011

29 Glorious months on this earth.

Rest in Peace Mighty Mouse, you are so missed.