Something to cry about....

I was watching a photography "webinar" tonight, about maternity portraits, and this particular instructor is involved with the charitable organization Now I Lay Me Down To Sleep (NILMDTS), where professional photographers provide beautiful portraits to parents of stillborn babies, or babies who die shortly after birth. We never had a NILMDTS shoot with Everett, but it prompted me to go back to his photos and look them over once again, and the significance of his struggle, and of our loss hit me like a tidal wave. All over again. Seeing his life played out in sequence, in photographs we never knew would be our only photographs is unreal. If I had have known I was documenting the only days of his life, I would have done a better job, I would have taken more, I would have tried to capture every inch of his beautiful little body.

These pictures don't do him justice.

He looks big, but he was so little.

You can't tell just how much he looked like Landon.

But they're the only pictures I have, and they're haunting. They show his downward spiral, from healthy to incredibly and desperately ill. As each day passes more staff and more equiptment congregate around his bedside.

When I look at these, life seems to re-prioritize itself, what really matters becomes very apparent. When you realize there's so much we take for granted, including our children, it because very easy to see all the trivial things we take too seriously and get far too wound up about. Saucy kids? Drained bank account? A few extra pounds? A broken marriage? Insignificant. My baby died. My gorgeous, innocent, and much loved baby was born with a horrendous heart defect, lived 20 days of uphill struggle and then he died. That's something to cry about.
















But, his strength, his endurance, his breath taking beauty, the lives he touched, the love he evoked, the memories he's left, the passion he's inspired, the good that has been done in his name, are all reasons to be comforted, and to be grateful to have ever had him at all.

At the heart of it all, the love we have for one another is all that really matters. And nothing is more worthy of your tears then lost or wasted time with your life's most precious people.

Put down that book, that broom, those dishes, that laundry, and go love up your children, who are the most amazing blessing you'll ever know. When the act out, act up, act horrible, even on their worst days, they're still more then you'll ever deserve, little gifts from God to teach you about what life is all about, cherish them accordingly. Life is short, sometimes exaggeratedly short, celebrate each and every second, as cliche as it may sound, as though it were your last together.

If I had have known I was living our last days together, I would have done so much more with it. I would have insisted on holding him more, touching him more, mothering him more, and capturing more of him in pictures, enough images of his sweet face to last a life time.

Katie

The "Suppose to's"

I've got them bad today.

Blame it on sad country music, but my mind is wandering and my heart is hurting and I can't help but think about what is "supposed" to be.

I'm supposed to be 13 weeks pregnant right now.

I'm supposed to have two little boy tearing my house apart right now while their big sister is at school.

I'm supposed to be waking my husband up soon, and getting some time in with him before he goes into work again tonight.

I'm supposed to be arranging my basement to accommodate an extra bedroom, so I can prepare to give our bedroom to the new baby (who's not coming any longer but is supposed to be!)

I'm supposed to be planning a big family birthday party for the kids, which will now be half the size.

I'm supposed to be planning a family trip to Florida in the new year for our annual trip to Disney.

The "Supposed to's" suck.

Katie

If we had only done this instead of that....

then things would be so different.

If only.

Those words echo in my mind day and night.

If only.

If only I got two steroid shots instead of one before the boys were born.

If only I went a few weeks longer.

If only he was diagnosed sooner.

If only we delayed surgery until he was bigger.

If only we had the option of a heart transplant rather then fixing the badly broken heart he had.

If only that surgery had gone better, or didn't take so long.

If only he didn't need ECMO.

If only he didn't need it for so long.

If only he didn't get that brain bleed.

If only.

If only I could have read minds.

If only he spoke up sooner, or clearer.

If only he said what was really on his mind.

If only his faith was stronger.

If only he wanted to try.

If only I had the strength to wait him out.

If only.

If only I didn't let the stress get to me.

If only I stayed calm in spite of it all.

If only my blood pressure was stable.

If only I could have done something.

If only.

Haunting words, and always present, I can't help but wonder why my life would look like now, if only something had played out differently in the past. If Everett had lived, if Elvis had stayed, what would I be doing right now? What would be be different? Everything.

If only.

Katie

Never wanted this......

I've always thought of myself as satisfied. I never wanted what I didn't have, and always wanted what I did have. I love life's little pleasures, back to school, the first snowfall of the year, Christmas specials, all the holidays, little birthday parties, family dinners... It doesn't take much to please me and I've always just felt content with what life has handed me.

Then my son died


My husband left me


And I lost a very wanted pregnancy


And suddenly I'm thinking, I never wanted this! And I am not satisfied. I don't like where I am and I very much want what I don't have. I'm struggling to find a sense of satisfaction and contentment again, because feeling this way is unpleasant. But how do I accept what life has given me when it isn't what I wanted? When it isn't simple, or pleasurable?

I was happily married and liked it that way. I had a husband I enjoyed and loved deeply and a marriage that felt comfortable and warm and safe. Now I don't, and I am not happy about that. So how do I accept it for what it is and move on? How do I imagine my future without the man I always envisioned spending my whole life with? How do I imagine some other man in his place? I don't even know where to begin? It feels alien and abhorrent to imagine myself with any other man then the only one I've ever known.

How does one make peace with having a child die? How do you begin to appreciate that it was just part of your life's plan and be satisfied with the way it all had to play out? How do you just accept that God understands and be content with your own limited understanding of life's tragedies? Don't ask me! I fake it, or I talk myself into believing I get it and my heart is healing, but in all honesty. I don't get it, I want my son back and I am not satisfied with how it all played out!

I never wanted to birth three kids and have only two to raise

I never wanted to find out I was pregnant only to find out a week later I wasn't pregnant anymore

I never wanted to be separated, or divorced, or looking for new love

I never wanted to start from scratch

But here I am.

I can't describe myself as contented anymore, or satisfied with all life gave me. I still enjoy the little things, like the first snow fall, which happened yesterday and made my heart feel 8 years old again. I still love back to school and Christmas shopping, but my enjoyment is clouded by worry and stress, loneliness and regret and its hard to just say "Ahh, life, it it was it is and I love it". Rather lately I find myself thinking "Damn! This is life? Is hard and its sad and I don't know what to make of it!"

I hate thinking like that! I have spent a lot of years in a lot of different relationships pointing out the joys of life, the grand scheme, the greater plan, ect.... And now I can't see it for myself anymore. I feel like life is big horse and I got bucked, and I'm sitting on the ground complaining of my sore backside from the fall and terrified to get back on for fear of greater injuries ahead. How many times can I get bucked from my horse before I'm not actually fit to get back on and ride some more? But, if I don't get back on, then the remainder of my life will be spent tending to old injuries and lamenting over past falls, watching others pass me by and wondering where they're going, and what excitement lies ahead for them. Worse yet, what if I'm that person sitting on the sidelines yelling to the other riders "You better just get off now, you'll only fall off and get hurt later if you don't", what if I ruin the ride for other more fearless and bold riders?

Its hard, and its scary, but truth be told, I need to get back in the saddle and try to enjoy all life has to offer again. I need to find my way again, I need to feel happy with what life gave me and find satisfaction in my world again. I need to take pleasure in imaginig a future that looks nothing like I thought it would. Its going to be scary, and I might fall off again, but its no life at all to sit on the sidelines.

Katie

The little things......

Its been 59 days since my marriage fell to pieces. It feels like just yesterday, but its been as good as two months since I've felt loved by my husband. Its starting to weigh heavily on me, and each day brings a new craving for some marital affection, some tenderness, some warm and dependable shelter from the rest of the cold, cold world. With each dawning day I begin to feel a bit more out in the cold, each new night makes me feel a little more lonely the night before it. Right from the start I missed the big things, his presence, signs of him dwelling here strewn about the house, the security of his income and his contribution to managing our home, but now, 59 days later, I'm being hit by the loss of the little things, and I think they hurt more then the big ones.

Watching Grey's Anatomy the other night (this show always kills me), watching tender moments between couples offering one another consolation over their collective grief, I felt pained, because no one loves me like that anymore, not in that tender, romantic, protective, "just want to make you feel better" kind of way.

Around the house I find I get lonely at dinner time, when there's no one to make dinner for but the kids, who eat pretty basic meals. No one to help get them ready, no one to eat and chat with, no one to pack left overs for their lunch the next day.

At bedtime when I'm finished reading and turning out the lights, sometimes I'm compelled to reach for the phone like I always did when we was working nights, to call him and tell him goodnight and walk around the house while I have him on the phone to do my little security check. I miss that.

No one to watch my favorite shows with, no one to talk about them with when they're done.

No one to curl into a night, after a bad dream, or a good one. No one to wake in the night if I hear a noise.

No one to kill spiders or stomp bugs, no more hero come to my rescue.

No one to rub my forehead when I have a headache, no father in law to do the special "oil treatment".

No one to help with the day to day kid stuff, no one to help me deal with the stress, no one to laugh it off with, no one to point out how funny/cute/amazing the kids are when they do something of interest during the day.

No more using the "When Elvis and I......." starts for sentences, no more "I'll ask my husband"

No more taking part in "Tell me about your wedding" or "Show me your rings" conversations

No counterpart at get togethers at friends, no one to sit next to at the table.

No one to take me to dinner, or the movies, and to hold my hand, or share dessert.

No one to kiss goodnight, or good morning.

No arms around my waist, no hugs, no back rubs, no whispered "have a good day" when he leaves for work in the morning, no calls in the day to see how my day is going.

No more treats from the store "just because"

No more of any of this for me.

They're not such little things after all, they're the culmination of the love and affection and devotion that make up a loving and wonderful marriage, and they are no more. Some days I can cope, and some days I am more lonely then I could ever describe, so lonely I can barely breathe.

Now I pray...

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

I pray for serenity, but I also pray for the loneliness to pass, but not so I can live a life absent of loneliness, but that it will be replaced by all those little things once lost, so that my life can be once again filled to the brim with them.

Love

Affection

Warmth

Security

Devotion

Admiration

Friendship

Passion

Trust

That me and my heart will once again be taken care of.

Katie

The painful cutting of ties....

I'm still wading through the aftermath of my marriage crumbling, in record speed I might add. I'm sifting through the debris, trying to pick up the pieces and make sense of what actually happened. I'm taking my time, because every now and then I stumble across a big piece of debris, a memory or an obstacle that accompanies the death of a marriage, and I need time, time to grieve it, and process it, then pack it away.

Lately, as I sort through the mess that is my life right now, I'm coming across faces, familiar faces of people I've come to know and love over the past seven years. Under each picture is a story and memories that break my heart. These are the faces of family, family I'll never see again, our ties severed in the loss my husband, those faces belong to him, and he's taking them with him when he goes. Sisters, brothers, parents, nieces, nephews, a great big family, not mine anymore. Children I've known since birth, held as babies, and called my own nieces and nephews, will not know Aunt Katie anymore. Sisters I confided in, brothers I could depend on, parents who showed me love along with their son, gone. All of them gone. I'll need a lot of time to process this. I won't ever be at another big family dinner, I'll never be apart of the lively energetic chaos that comes with a big family like this. I feel like I got kicked out of the club, disowned, left at the road side. They were my family and I loved them, and now they're gone, all of them.

I wonder if they know how I'll grieve them like I grieve the other losses in my life? I wonder if they'll think of me at all, like the sister in law, or daugher in law, or Aunt who was, and then just wasn't anymore. Will I be that ex family member "we don't speak about?", will my name be taboo? Will anyone hold on to any positive memories of me? I feel like I'm outside a big family home where a big warm celebration is taking place, and I'm out in the cold with my nose pressed against the window wondering how the heck it came to be that I am on the outside looking in! I sure felt like I was on the inside! I felt the warmth and the love and a sense of belonging, I felt like I belonged, and now I'm a stranger.

Its the weirdest thing. So many memories, places, things, are going to forever remind me of the family I lost.

I'm going to remeber road trips, a particular drive from home to Florida as a new couple with a future sister in law in tow

I'm going to remember Florida, visiting a sister and her family and feeling truly at home

I'm going to remember New York, and New York accents, and spanish rice and chicken stew

I'm going to remember going to visit parents and being served a steady stream of snacks and drinks by a woman who knew no better way to show her love

I'm going to remember candid talks on big leather couches with a sister and brother who I knew would listen and can be trusted

A sister who dropped everything to take us to the hospital when Everett got sick, and stayed long after she needed to, from love and support

A father in laws thick Italian accent, hard to decipher but icrediby endearing

A brother in law with the heart of a child, a fabulous brother in law

Another brother with a strong work ethic and wife I thought of as a friend

A sister who suffered a loss like one I suffered and a felt a strong tie to

A sister with huge heart and a radiating warmth that made her so easy and enjoyable to talk to, a sister who gave me a book and helped bring me to Christ

Chicken cooked in tomato sauce will always make me think of my mother in law

A great big wonderful family, not mine anymore.

I wish I could tell them I had no clue this was going to happen, I wish I could tell them I wish I could have changed it, I wish I could pound on the proverbial door and be let back in.

They'll never know how much I'm going to miss them and how horrible it feels to be on the outside looking in, and to have all my ties to them completely severed.

Just another loss to add to the pile

Katie

Struggling with the sadness

I'm continually amazed at how it never gets easier, or less painful, to miss Everett.

I get by, through the day to day, by distraction, and blantant denial, but its inevitable that I'll let my guard down and allow myself to feel the pain and be completely laid out by it.

It started yesterday, though I'm not sure what brought it on, and its continuing on today, leaving me feeling constantly on the brink of tears and completely not in control of my heart. The videos I posted yetserday haven't helped. Don't get me wrong, I posted them because he is beautiful and I want the world to know him, and I wan to "see" him, but its bitter sweet. I don't enjoy the videos at all, they tug at my heart and quicken its beat, they bind my stomach in knots and fill my eyes with tears. They transport me back in time, where I was panicked and powerless and confused beyond measure, terrified at how out of control life was, and I feel it all over again. Its not pleasant, but its necessary, for I can't ever forget those feelings that tie me tightly to my son and help me remember better then any photo could. So, I posted some videos on a very low night, when was overwhelmed with loneliness for Everett, to help me remember, and to satisfy my desire to make others remember too. I got what I wanted, but now I pay the price of having opened an old wound, that though was never actually healed, it was closed and bearable.

It never fails to surprise me how fresh and potent my grief still is, it hasn't mellowed at all. Thank goodness it comes in waves and gives me days, weeks, or maybe even months of quiet reprieve before crashing onto my life again.

Now I am also thinking of upcoming birthdays. All three of my children were born within 3 days of each other in November, and that's coming up fast. I regard their upcoming birthdays with excitement and resistance, because I can't tell you how hard it is to celebrate Everett's birth without him. Its impossible. On November 17th I'm going to celebrate the birth of my twin boys, without one, its like a twisted, cruel joke life's playing on me. I have to do my best to make a happy day for Landon and Avery, who will have a joint party due to the close proximity of their celebratory days, but I also have to cope with the re-breaking of my heart. He's not here. He never had a 1st birthday, he never even had a 1 month birthday. What do I do about that?

My instinct is to do something grand in his name, to help others in ways I couldn't ever help him. But since the failing of my gala, I'm weary of that. But something needs to be done, to honor Everett and his life and his battle, and also help me! To help me feel as though I can help someone, or do something, in honor of my baby, who I never got to do a thing for, andwas powerless to help. I can't let his birthday pass without honoring it, but what to do?

Donate to Sick Kids? Maybe, its a good cause for sure?

To Plan Canada? Another amazing cause, it would do such great things in Everett's name!

Samaritans Purse?

Our local hospital? Gift baskets for other bererft parents?

A combination of the above?

I'll have to think on it, and think fast! Time isn't marching on, but rather it seems to be running, because how is it that it can be nearly 2 years since my baby boys were born?

Nearly 2 years old and living life without Everett still has me struggling. Grief on top of grief, on top of grief. Its difficult to find balance when life keeps trying to knock you down.

Katie