remember me this way...

This morning, my 3 year old son stood still in the middle of our living room looking at a photo on the wall. He's a bit "spacey", so I didn't think much of it and went about cleaning up. After a moment he looked at me and quietly said, "There's nothing in his nose."

Not knowing what he was talking about, I agreed with him and kept sweeping the floor. 

"I don't remember Nathan without stuff in his nose." My three old elaborated on his previous statement, grabbing my attention. 

LB didn't talk about his little brother's passing much. Occasionally if someone else brought it up, he might say something. But he never brought Handsome up. I didn't know if it was because he just didn't understand that his little brother went to Heaven or if it was too painful to talk about, but I let him be. I decided that if he had questions, he'd ask and then I'd answer. Other then that, we did our best to explain that Handsome was sick and he had to go live with God and we talked about him everyday, but we never pushed our three year old to participate in the discussions. 

So when LB brought up our angel family member, out of the blue, I stopped what I was doing and sat down with him. I noticed that all this time he had been looking at a photo that hung on our wall. The last family photo taking of us. I looked at the 20x30 canvas print that my friend Michelle had done for us and I, too, noticed that Handsome did not have tubes in his nose. I remembered how I had pulled the feeding tube that had inhibited Handsome's nose almost his whole life, out prior to our photo shoot, because I wanted to remember him without all the tape and tubes and wires. And I wanted my kids, his siblings to remember him that way, too. I explained this to LB, as he continued to look at the photo. 

"Nathan wasn't dead." His little voice stated and I nodded in confirmation. I told him that he was right. Handsome was still alive when we took the photo, last August. 

"I miss when Nathan was alive." I started to cry as my three year old's eyes watered at the memory of his baby brother's life. I told him I missed his brother, too. 

"I remember what Nathan looked like when he was dead." LB started talking about Handsome's funeral. "In that box. At that place." Tears fell from his eyes onto his cheeks. "I want to remember him like he is in that picture. I miss when he was that way. I wish he was not dead." 

I've always been a picture person. I'm that girl who in a house fire would run through flames to save her family photo album. But I never could have imagined how much a photo would mean to me until this morning when I saw how much the photo meant to my three old son. 

I pray someday the images of Handsome seizing and restricted to a bed with machines and tubes covering his body will fade from LB's memory and the moments we all shared with Handsome when he was "doing okay" will take their place. I hope someday my kids can look back on these pictures and remember Handsome this way. 

6 months

It's been six months since my baby boy was called home. He passed away early one Sunday afternoon and my husband and I slept in the living room that night, not ready to face the room we shared with him. I screamed and cried all night, with gut wrenching pain. Since then I try very hard to keep composure. I have four other kids who need me to stay strong. I have a life that I must keep living, even though everyday since he left all I've wanted to is join him. 

"It'll get better with time." Everyone likes to remind me. But as the eleventh day of the month comes and goes for the sixth time, I wonder when... when will it get better? When I celebrate Mother's Day tomorrow, knowing one of my children will never get to make me hand print cards? Or my birthday, that's approaching, where I won't get to hear his toddler voice wish me a good day? 

Some wounds time can't heal. Some pain you never recover from. You just push on, because you have no choice. 

Dear Handsome,

My Dearest Handsome,

It's been twenty one days since you were called home to Heaven, but it feels like yesterday to me. I still feel you and at times I swear I can hear you. I get anxious at medicine times, because I want to give you your meds. I can't sleep at night because I feel like I'm forgetting something... I'm forgetting you. People say time heals all wounds, but for me time is standing still.

People ask me daily how I'm doing and I don't know how to answer them. Sometimes I want to hit them for asking or shake them and scream at them, HOW DO YOU THINK I'M DOING! Other times I want to tell them the truth. I want to tell I am feeling unbearable pain all over my body and that every time I get behind the wheel I think, if I run that red light maybe I'll get hit and I can be with you again. Then there's times that people ask how I'm doing and I want to ignore them. I want to pretend they aren't here and that this hasn't just happened to me, to you. But I always just lie to them and tell them I'm doing well that I'm hanging in there, because I know it's what they want to hear. I know my friends and family don't want to hear the truth about how I'm handling your death. I know that if I told them the truth they wouldn't know what to say or how to help, so I just lie.

I've always tried to go out of my way to please other people. I'm a people pleaser and people want me to be okay, so I'm okay, even though I'm not.

And then there's you... For the last two years all I have wanted to do is to make you happy, to give you the best life I could, to save you. Every decision I have made in the last two years has been made with your best interests in mind, even now... Though I can't stand to eat, I do it anyway, because it's what you would want. And I want to lock myself in my room and never come out again, I don't, because it's not what you would want.

And then there's people telling me to move on, to find a me without Nathan, but that's impossible. I will never get over losing you. You weren't my high school boyfriend. You are my son. You are a piece of me that is gone forever. I can never get that piece back. I will never be whole. Finding a me without you... it's just not possible. I'll never heal. A band-aid can't fix this. I'll always hurt for you. I'll always miss you so much that it hurts and I want it that way. The pain is what reminds me that it's real. That you did happen and that you were here and you will always be in my heart. It's a reminder of the love we shared and the bond that we had. It hurts, but it's where you are. It's the hole that only you can fill.

I don't know when I'll be okay. I'm not even sure if I ever will be.

The DNR

This past June, Handsome was diagnosed with a terminal condition. We were told our son had significant brain atrophy and they didn't know what caused it and that there was no cure for it. We spent weeks in the ICU, where every few days a new doctor would be called in on consult and he or she would come "talk" to us. They'd ask us to reiterate what we understood about our son's condition. Then with empathetic eyes they'd explain to us how our son would probably pass. They'd talk about the aspiration pneumonia, he would develop or the cardiac arrest he might have. They'd explain to us how he was building up tolerance to most seizure medications, which meant one day they might not be able to stop his seizures. Then after all that, they would ask us to sign a DNR. 

Most people who know me personally, know that I RARELY make any decisions on my own. I talk to my husband before making purchases. I ask my brother for his opinion on discipline. My friends help decide on outfits and my mom helped me with choosing who I married. It's not that I'm not my own person and can't make my own choices. It's that, I've always looked for someone to blame, besides myself when the choices are wrong. When my husband tells me I wasted money on my new, ugly lamp I can say, "You're the one who told me to buy it."

I thought at first the reason I couldn't sign Handsome's DNR was because it was a choice I'd have to make and if I regretted it, I'd only have myself to blame. But as I sit here, staring at the now signed DNR, I realize my fears didn't lie in where I'd place the blame. I was terrified of those letters D N R for so long. No parent should ever have to consider them when it comes to their child, but some of us do. Just because it's not right, doesn't mean we can avoid it. 

I thought I was being a good mom by not signing it. By pretending his condition wasn't life threatening, I thought I was saving him. I kept telling myself if I signed that dreaded DNR, I was giving up on him. But my self conscious kept budding in, telling me I was being selfish. I'd defend my choices by reminding my conscious that waking up every three hours at night for feeds and medicines was not selfish. Committing to frequent hospital stays and up all night with breathing treatments was not selfish, it was doing what needed to be done to save my son 

But what kind of life is this for Handsome? In and out of hospitals. Invasive treatments. Breathing tubes. IVs, IOs. Shock therapy. Chest compression... I started asking myself how much of what he goes through is "saving him" and how much is just keeping him alive, because I'm not ready to let go... I'm not ready to let go... And that's when I realized something... 

I wasn't holding out on signing the DNR because I was worried about who I'd blame if I regretted it. I've been holding out, because I've been waiting for a miracle. I'm not ready to let go, because I still think every time my phone rings and its a number I don't know, that it's someone calling with a cure. I kept thinking if I could just keep him here long enough maybe someone out there would find a way to save him. 

A part of me feels like signing the DNR today was giving up that hope and I don't think that feeling will ever go away, but I also know I did the right thing. I did the best thing for my son. I used to think the DNR was the selfish choice, but it's not. I'm not taking my son's life away from him. I'm giving him a chance to live a better life then he has been living. A life without tubes and vents. Nights in his pajamas, in his crib, listening to his siblings tell him goodnight. Days in his house, with his family, watching movies. A chance to be home for the holidays and his birthday versus in an ICU. I know, now, that signing that DNR isn't about giving up on him and I know there is still a chance for that miracle. I haven't giving up on that, yet, either. I just can't keep putting his life on hold waiting for it, because one day, I may not have that choice anymore and I'll regret never letting him live a lot more. 

Cherish Them.

"If there is anything you want to do with Handsome, do it now. Don't waste a second of his life. Hold him. Love him. Do everything you want to do with him while you can, because I don't think he has long left. And I don't want to see you come through those emergency room doors a month from now and when I have to tell you there is nothing else we can do, I don't want you to look at me and say you thought you had more time. I don't want you to tell me you wish you had held more or told him you loved him more often. I really don't want to mislead you into thinking you have time, because you might not." 

That was one of the last conversations I had with Handsome's doctor before he was discharged. I think about those words often. When I write a blog, for instance, I used to lay Handsome in his swing and Doc in his pack n' play and I'd blog while the big kids played in their room or were gone to school. But now, when I sit down to type up a blog the warning from Handsome's neurologist plays in my head and I get up, pick Handsome up from his swing and I hold him a little bit longer then I did the day before. 

At night, we all like to curl up in mommy's bed and read a book. Skywalker and Heidi take turns trying to sound out the words, while LB, Handsome, and Doc lay and listen. I use to rush this night time tradition. I'd pick a small Dr. Seuss book knowing that we could read it quickly and then head to our own beds for sleep, but now, when we pick a book we pick the biggest chapter book on the shelf. (that is appropriate for children, of course) 

I have doubled the amount of times I hug my kids each day. I have tripled the amount of I love yous I say to them. And I am finding way more time to spend with them. Time that I thought before I did not have. I needed to clean, plan meals, cook, clean some more, do laundry.... I always had an excuse, but I have since learned that the laundry can wait. The house doesn't need to be immaculate all day, every day. I have learned that the time I have spent trying to keep up appearances and trying to be perfect, is time much better spent playing with my kids. 

All of my kids. Not just Handsome. He may be the one with the impossibly heart breaking prognosis, but if I learned anything for the last two years, it's that nothing in life is guaranteed. We aren't guaranteed a healthy pregnancy, a smooth delivery, a child without flaws. We aren't guaranteed a lifetime with our children. I think that's something, we need to be reminded sometimes. No matter how little, how young, how healthy or how sick, someone can be gone tomorrow. 

After reading so much about Handsome's story, I hope you all take a step back and think about how it could be you in my shoes. It could be your child. 

If you never learn anything else from my blog, if my craft tutorials or cleaning tips are nothing new to you, if my journeys through fitness and organization don't teach you anything, if you get nothing else out of this website, I want my son's story to at least make you appreciate your children a little bit more. I hope after hearing about Handsome and his struggles, that you go home from work and hug your kids tighter. I hope that you spend five extra minutes a day reading to them. And I hope that you tell them you love them one more time then you did yesterday. Because tomorrow, you may not have the option anymore. You shouldn't need a poor prognosis and a terminal illness to appreciate your children, to want to be with them, cherish them, and love them as much as you possibly can.