Now What?

So it’s been over a year since Nickolas’ death and I’m still confused. Now that I’m over that extreme feeling of grief I don’t know what I should think. There’s so much I should do and could do it’s very overwhelming, there’s work or school even volunteer work. I know life needs to go on but I don’t know how to go about it being so detached for so long.

I’ve thought of studying to get my GED or finding a job or both and I know it’s what I need to do to get my life back on track but it’s intimidating to say the least.I think what’s holding me back the most is my back injury, as much as people think I’m lying the way the hospital messed up my back leaves me in pain when I walk more than 5-10 minutes or sit in a chair for an hour or so, even laying down gets uncomfortable after a while. If I try to go for Disability everyone’s going to call me lazy and think I’m crazy because I’m only 20 and if I sit at home and continue doing what I’m doing everyone is going to tell me it’s time to move on. I’m stuck between a rock and a hard place and I don’t know how I’m ever going to figure this out.

I mean let’s say I get my GED so I’ll have my diploma out of the way, that means I’ll be able to A) Go to college or B) Get a job. Either way it involves finding a job which means sitting, standing and everything else that comes along with working. It all comes back to my back and I really curse the hospital here in Sudbury for doing this to me, I used to walk miles and miles a day and now it hurt to walk to the 5 minutes to Wal-Mart. I don’t know I guess I’ll have to do my best to figure this out on my own, I mean who else is going to make decisions for me but myself. This is what being a grown up is all about!

4 More Days

So the big day is in 4 days, and it’s really weighing on me! I just want to crawl into a corner and not come out for 24hrs with a giant box of tissue. Although I know that’s not plausible nor is it healthy it’s what I really want to do!

I am trying to think of something to write but my mind’s been so occupied I can’t think of anything!

Almost There

So it’s 8 days away until the worst most painful day of my life. I don’t really know what to say at this moment because every day it’s gotten closer the more and more depressed and anxious I’ve been getting. I wish I could tell everyone it’s been easy but it’s been excruciating to watch the days tick down to this awful day.

Each day I long to hold him in my arms more and more, the pain rarely subsides and leaves me in peace. Almost a year after I sit here and feel like a horrible mother because I can remember holding him and loving him but I don’t remember what it feels like, my arms have been empty far too long. Honestly I can’t remember much from the time Nickolas was born until the day he died, I remember the events but the actual time together is a blur. I sit here night after night wondering if it would be best for me to join him because I don’t feel complete and I am definitely not myself anymore.

In my year’s journey through grief I have found that although people always say it’ll get better, they don’t really understand what it does to you. Even though I don’t do anything all day my grief exhausts me to the point where I feel like I’ve been working 12hr shifts every day. Even when I’m up and out I still get sidetracked and end up thinking about my great loss.

Any who I’ve got a lot to think about before next week, so I think this is enough for the day.

Chatroom Added

Good news guys, I went searching on the web and I found an API for a chat-room, so now if you go to the page at the top “Chatroom” you can click on it and chat amongst yourselves, just remember to be nice, you can talk about anything you like 🙂 Remember it’s a safe place to grieve. I’ll try to check back as much as I can! Oh and my chatroom nick name is rockbottom just so you know when I’m online 🙂

Hope you enjoy it!

Funeral Songs

So it’s happened and unfortunate as it may be, you’ve made the funeral arrangements and the Funeral Home Director asks you if you would like the organist to play or if you would like to bring your down music. So what do you say to him?

Well this site has compiled a nice list of songs that can be played while a funeral is in session.

Heavenly White Doves

I personally chose more kid oriented songs for Nick’s funeral. But you can choose what ever you feel is appropriate.

Loss Of A Parent

The death of a parent is a life-shaking event for which few are prepared. This experience can wound us deeply, leaving lifetime scars. Or it can, if grieved fully, initiate profound, unprecedented change and open our world into new perspectives and choices. The following steps to grieving the loss of a parent (whether recently or in the past) will tap this transformative potential.

Acknowledge the importance and power of this event. The death of a parent shakes the very foundation of our lives. It is natural, though often uncomfortable, to feel raw and vulnerable, alone, out of control. Rather than resisting the powerful forces activated in grief, learn strategies for moving through it, stage by stage, day by day.
Take time each day to honor your grief. Set up a sanctuary in your home or in nature, a protected place where you can open fully to your grief for ten to twenty minutes every day. Using the sanctuary, gradually you will find a rhythm of entering the grief for a period each day, then letting it go and attending to daily tasks.
Address any unfinished business with your parent. It is very common for unresolved feelings toward your parent to surface after his or her death. The grieving period is an important time to heal these old wounds and begin to say good-bye.
Participate in creating new family patterns. The family system is often thrown into chaos and upheaval after a parent’s death. Old patterns don’t work with the same predictable results. The family may thrash around for months, seeking a new balance with one another. This is a brief window of opportunity, when the family is opened up to change before a new system is established. You can either be thrown into this new system or consciously participate in creating new patterns that are healthy for you.
Explore the direction and quality of your life. The death of a parent often initiates a period of painful questioning: Where am I going in my life? What do I really value? What are my beliefs? Does my life really matter? This questioning is a critical part of the grieving process. Out of it will come new perspectives, directions and choices.
Don’t pressure yourself to “get back to normal”. Many expect that grief will be over in a few weeks or months. Grief has its own rhythm, nature and timing that resist our attempts to control it. For some, though certainly not all, there is a marked shift around the first anniversary of your parent’s death. However, as the years pass, the grief may well up from time to time. Each time it surfaces, see it as an opportunity for more healing.
Learn to parent yourself. Give yourself nurturance, love, protection and encouragement. Clarify the expectations you had of your parent that he or she never could fulfill. In seeing the relationship for what it was rather than what you wanted it to be, you can grieve what your parent didn’t give you and begin to appreciate what he or she did give you.
Let your friends know what you want and need from them. Offer them some suggestions of ways that they can help and support you– perhaps bringing you a meal, doing some errands, giving you a back rub, taking a walk with you, checking in on you regularly. Assert that your need to withdraw. Let him or her know about anything that he or she is doing that is not supportive. Encourage your friends to educate themselves about grief so that they will know what to expect. Remind them that grief takes a long time to heal.
Each year acknowledge the anniversary of your parent’s death. Take time to reflect and do something special to commemorate that date. Be gentle with yourself, as this is a vulnerable time in which many may feel depressed or emotional.
Celebrate the changes and new perspectives. These will begin to manifest in your life as you move out of the dark middle phase of grief. When you feel ready, act on new ideas, inspirations and insights.

How To Help A Man Who’s Grieving

If your friend or loved one recently lost a baby, there are several things you can do to help him cope with the death:

• Be supportive: He may need you to help him with funeral arrangements including driving him to the funeral home, picking out a casket or selecting flowers.
• Don’t judge: If your loved one refuses to talk about the child’s death, don’t force him or judge him. He may not be ready to talk, bringing it up may only agitate him or make him sad.
• Listen: When he is ready to start talking, be there to listen. Tell him how sorry you are for his loss. Do not throw clichés at him, because he does not want to hear them. He only wants his child’s mother to be happy again and to have his baby alive.
• Help him with simple tasks: If his lawn needs mowing or groceries purchased, then step in and do those things without his asking. If there are siblings around, then offer to take them to the movies or the park to give the parents some well-needed rest.
• Offer financial support: Many times, an unexpected death of an infant can create a huge financial burden. If you are able, loan some money to the family to help pay for the funeral or medical bills. If you are unable to give money, then help set-up a fund-raiser or collection to assist with these needs.

Happy Birthday Nick

Today is Nickolas’s hypothetical 1st birthday is today and my feelings of grief overwhelm me like it was the day he passed away all over again. I cannot believe it’s already been that long since that Thursday, May 21st 4:25pm, that my water broke on my way to go pick up my mom from work. Which by the way he was so special he was even born on his due date.

I can remember that day like it was yesterday, that ecstatic feeling of knowing that after 9 long months my waiting was finally almost over and I would soon be with my precious miracle son. I called everyone I could think of and I posted it on facebook for anyone I couldn’t get a hold of. I couldn’t sleep that night knowing that he could come at any moment, the little sleep I did get was spent dreaming about what he was going to be like and everything that I was going to be able to do with him.

When I got to the hospital the next morning and they put me on the drip I got so excited to know that you would be arriving shortly. But then things went wrong, I suddenly got really intense back labour it lasted for 12 hours before I finally requested for an epidural, they tried 5 times and once the guy tapped some of my spinal fluid, it finally took a little bit and the pain went away. I then discovered that there was something much more going on inside of me, the pain from the back labour was masking something much worse. I got this intense pain and pressure in my pelvic area and it was at that point that I knew something wasn’t right. I begged the nurses to get the doctor in the room because I wanted to have a c-section, they told me to settle down and do my breathing. I was crying uncontrollably from the pain and the feeling that something was wrong and I begged, pleaded, and swore for someone to do something about it. I knew it was my first child but I also knew that after having an epidural that I shouldn’t be feeling pain like this.

This went on all through the night, 11hrs went by before my midwife finally showed up to check up on me, I told her what was going on and it was only her that listened to me and she got the request for an operating room. With in 20 minutes I was in the OR awaiting my c-section. We were waiting for the surgeon to show up, when he finally arrived the OB/GYN had to take off for another woman in labour, so I was again made to wait. She finally got back but we were waiting on another anesthetist to drive from home, that took an hour. Everyone was finally in the room and things were getting underway, I had to get a spinal tap if I wanted to be awake for the procedure. The anesthetist tried 20 times to drive that 15 cm long needle into my spine but to no avail he couldn’t get the right spot. I began crying hysterically because I knew what that meant for me. I didn’t even bother counting backwards as the doctors placed the mask upon my face, I lay there warily with tears rolling down the side of my face and wept until I was plunged into eternal darkness. All I could think of while I was waiting for the inevitable sleep that would over come me is “this is not how I planned things, this is not how I imagined the end of my pregnancy would be.” What I didn’t know was that what to come when I woke up was much worse than the impending  “doom” I was about to slip into.

It took all of 45 minutes to get the c-section over and done with, when I came too from the dreamless nightmare I could see the nervous, saddened, worried, troubled, depressed, and bleak look on my mother’s face. The next sentence would crush my heart in two, my midwife slowly walked up to my bed “you had a beautiful 7lb baby boy but…” my shattered heart sank “it took us 3 minutes to revive him but he’s safe in the NICU.” Even though I was half asleep still my mind was racing, and to tell you the truth the first thing I did was in my mind told God to go f*** himself. The only thing I wished my whole pregnancy was for a healthy baby, I didn’t wish for certain looks or super smartness I just wanted to have a healthy baby, my life had been pretty awful up to this point and being pregnant with Nickolas was the only thing that had made me happy in a long time. Now here I am cut from hip to hip, half awake, with my whole world falling from beneath me.

When I was finally fully awake the doctor came into talk to us, apparently according to them Nickolas’s lugs were under developed so they had given him some steroids to help make his lungs stronger. I was devastated, this wasn’t supposed to happen he’s MY baby I had a perfect pregnancy so therefore I was to have a perfect baby. It was almost 12hrs before they would let me go see Nickolas. I spent hours in that NICU talking to him telling  him to get better so we could leave, and if I wasn’t there I was downstairs smoking. My dad’s health coverage had recently gotten rid of paying for private room, so, I was forced to stay in the Maternity Ward with the other mothers. I was hour after hour as women and their babies sat in their beds feeding, singing, and playing with their babies. Every noise shattered my heart into even smaller pieces. Although it was very much her fault I even snapped at one woman who let her baby cry for 20 minutes, “doesn’t she know how lucky she is?” “I would kill to hear my son cry never mind get to hold him and rock him to sleep” “how would she feel if she was in my shoes?”, and finally I told her to make that stop crying, she ended up transferring in the middle of the night to a different room in the ward. Another woman who came into the room didn’t stay to long because she couldn’t handle my crying and talking to my partner in the middle of the night because God forbid I show emotions because I couldn’t sleep and could only think of why I didn’t have my baby and everyone else did.

Two days went  by with nothing getting better, they did numerous tests on Nickolas, all but what we would find out later to be the most important test of them all. Finally 3 days after Nickolas was born a Neonatologist (fancy word for someone who only studied babies and young children) decided that after everything they had done there was nothing more they could do so Nickolas was to be sent to SickKids Hospital in Toronto Ontario.  I cried, he was to leave later that day with the transport team, but I couldn’t go with him! My 3 days old baby boy was going to a city 5hrs away and I couldn’t be there to comfort him. Three days went by before we were finally able to leave Sudbury, and I’m glad in our absence my aunt who lived nearby was able to go on keep him company. It was 11:30 by the time we go into Toronto and to the hospital. In those three days I had been away he’d grown so much but he was still in the same condition.Nick was going to be a week old in a half an hour, but none of that would matter when the phone rang at 7 o’clock in the morning and the doctor picked up. I didn’t think I had any heart left to break but again I was wrong.

We got ready as fast as we could and hurried to the hospital, I knew I wasn’t going to like what the doctor had to say but never in a million years did I ever think I would hear what I hear next. “Your baby could die at any moment,” was the jest of what the doctor said, we went into her office and looked at the scans and they were worse than we could have ever imagined.

That spinal curve was killing my son slowly and could cause him to die without any notice at all. Every day there after I worried that I would get that dreaded phone call to come say my final goodbye to Nickolas because he would be on his way to be slid into a freezer.

For the next couple days my mind raced, all sorts of questions buzzed through my head. The biggest question in my head was “how can I save my baby boy’s life?” Unfortunately the answer didn’t come easily, it came with three options “He would die,” “he wouldn’t die and improve,” “he wouldn’t die but it would have not made any difference.”

My heart was heavy my mind was numb, that combined with the lack of sleep we got made me want to crawl into a corner and die! The Ronald McDonald House where we were staying is a place where seriously ill children and their families stay when they are a patient at SickKids, we created friendships there and because everyone was always going through something stressful we stayed up and talked till all hours of the night, the days seemed to blend together and the only reason you knew it was Saturday and Sunday was because the hospital halls were desolate.

The doctors wanted me to put Nick in palliative care and let him pass away slowly. They didn’t even want to try to help my son one little bit. As a mother I couldn’t just sit back and watch my son die, I had to do everything possible to try to help him, I had to give him the best fighting chance at life. The neurosurgeon, we’ll just say he could have learned a thing or two about compassion, after 5 days of arguing with him (one person even overheard him saying something about having to be in surgery for hours bent over) finally agreed to do the surgery. I had to assure them that I knew the risks of what was about to be done, so I told them “I know my son might not even make it to the operating table, I know my son might not even make it out of surgery, I know my son might never get better, but I have to try to give him every opportunity in life possible, and if by chance he dies then at least you have your research, you say you’ve never done this before, you say this is “pioneer surgery” then here’s your chance at least you’ll know if it can be done or not and it could save another baby down the road, then I’ll know that it was worth it and I’ll have given Nickolas a chance, everyone deserves at least a chance.”

We paced the waiting room back and forth, stood outside the hospital having a smoke, the intense tension in the room was so thick you could cut it with a knife. The worried looks on our faces and the sweat dripping down our faces as we silently sat in the OR waiting room. We stared up at the digital board which showed the patients in surgery and what their status was whether it was in OR, in waiting, in holding, or recovery. Ten hours had gone by since we said our possible goodbyes and took some last-minute pictures, the neurosurgeon walked out with the most solemn look on his face, I was about to break out in tears when he opened his mouth and said “we managed to relieve the compression now all we can do is wait and see what happens,” (see I told you he could learn some things). My heart started beating again and the tears retreated back to where they came from, I could breathe once again.

The surgery was over and Nickolas was transported back to his room, he was too drugged up to be awake so we gave him a kiss and left. The weeks went by and although his breathing improved a little bit it didn’t make enough of a difference and other complications arrived, his diaphragm paralyzed and his right lung collapsed and his left lung was starting to give out because it had to work twice as hard to keep him breathing even with the tube in. After a meeting withe doctors, we all walked back to The Ronald McDonald House in silence knowing what needed to be done. We debated for a couple of days within ourselves what was the best thing to do.

It was time to do what was best for Nickolas. He couldn’t move, he would never walk, he would never talk and he would never have breathe on his own he would have essentially been a vegetable all his life so I decided it was best for him to withdraw life support so he could be in a better place. It made it a little better knowing that I controlled when the life support was discontinued so I could tell him all the things I wanted to say before he passed away but it still doesn’t take away the hurt and anguish that I feel inside. My heart feels like it wants to rip out of my chest and although many people have told me you’re only 19 you’ve got plenty of time and plenty of other children to be had it’ll still never bring back my precious little angel.

The bereavement program there helped us get professional photography done of Nickolas and made imprints and molds of his hands and feet, anything to capture the last memories we would have of Nickolas. The date was set to fly him back to Sudbury on the 27th of July, he was to spend a couple of days hooked up to the life support to spend time with friends and family.

July the 30th came so quick, it felt like 2 minutes compared to the 2 months we spent at the hospital which felt like 10 years had passed. We arranged for Nick to be baptised, Becky Dube his Godmother and my brother Josh his Godfather. The moments ticked by and with each stroke of the clock my heart sank lower and lower. The time we had left with this precious little boy drifted pass, each moment spent hugging or kissing him would soon be the last. The doctor arrived at 3pm everyone was asked to leave the room while the tube was taken out. Slowly and careful the plastic piece was removed, the only thing keeping my miracle alive and with me. Morphine was administered to keep the pain at bay because once the tube was removed Nickolas would feel like he was drowning from the inside out. As soon as the machines were removed it was evident exactly how much Nickolas struggled to stay alive from day-to-day, he started gasping for air and silently crying (the tubes cause the infant the inability to make sounds until the vocal cords go back into shape which unfortunately takes a couple of days) with tears rolling down his cheeks. Zach and I spent a couple of moments by ourselves to have a private moment with Nickolas.

Everyone was invited into the room, the moment they walked in the tears poured from every eye in the vicinity, I even noticed a couple of nurses crying to themselves as to not disturb the little time we had left. We read “I’ll Love You Forever” by Robert Munsch, every page was filled with sorrow. Nickolas was then taken out of his cast, and for the first time in his life I got to hold my baby boy, as I sat there cradling Nick in my arms I felt my life slip out from me. My breaths came in sync with his as the colour drained from his body and his heart rate slowly declined. We took turns holding him, saying our last goodbyes in secrecy.

4:25pm the last remnants of life left Nickolas’s body, his flesh lay limp in my tightly clenched arms, his heart ceased to beat, a last breath exited his body and a sign of finality drifted through the air. My baby boy lay dead in my arms, as I held him as close as I could. If it weren’t for the sounds of my uncontrollable weeping you could have heard a pin drop in that NICU. People left the room to give us a final moment with Nick, I sat there holding on to any sanity I had left with Nick in my arms, all I could do was rock him back and forth. An hour and half passed by when the doctor came in the room to tell us it was time for them to take him down to, well you know…

The funeral was planned the next day, it was a beautiful service, unfortunately not very many people can handle a funeral for a baby so only close friends and family came. Nonetheless it was the only thing left I could do for him was give him a proper ending to life. Jaws dropped at the usher walked his casket into the chapel. The priest delivered an exceptional sermon and my mother, brother, aunt, and two best friends spoke words that echoed through the chapel and when they were done not an eye in the house was dry.

The days that followed Nickolas’s funeral were the obviously the hardest times I’ve ever had, I spent hours crying and days crawling up in a corner wishing I was dead. The first month was hard but it was bearable to say the least, I at least came into the living room. Now I sit here almost a year from the day he was born and 2 months until the day he died, and I still haven’t healed but the days get more and more easier to face, I still can’t go a couple days without breaking down some how but I’m getting a better handle on it. It still takes everything I have in me to get up in the morning though and each day that passed my heart sinks a little lower. This is the reason I sit on the computer all day playing games, I know it’s not healthy but it’s all I can think of doing at this time to not go insane.

Now to my angel:

Dear Nickolas,

This is your mother, I just wanted to say that my heart aches to have you in my arms, you’re the best thing that ever happened in my life and it saddens me not to have you here with me. I yearn to feel your hands on mine, to kiss your soft cheek, to sing you to sleep, to play with you, and to give you all the love I have within me. I know it’s not my fault but I still do this day feel like I failed to keep you out of harms way. I sit here tonight, tears rolling down my face because all I want to do is give you a great big hug and tell you how much I love you. I could sit here for hours upon hours writing to you so I am going to say Happy Birthday my sweet angel and I hope you know how much I love you and how much I miss you and wish you were here.

Love Forever & Always,

Mom

A special thanks to my mother for being there when I needed you the most, my brother for cracking jokes when we needed it the most, my sister for making Nick all those cute pictures, my best friends for giving me the support I need to make it to that next day, and anyone else who was a part of Nickolas’s journey in life. You have my deep and undying gratitude and I hope you know how much I appreciate everything you did at my greatest time of need. You’re all the wind beneath my wings and the reason I can survive on a day to day basis. Nickolas would’ve been the luckiest little boy on this planet for having all of you around. Love you all lots lots lots and even though I still don’t like being in the general public or going out all the time please don’t think I’m ignoring you I just need time, and I’m not sure how much that might be but you’ll know when I’m ready just please be patient.

~ R.I.P. Nickolas Michael Walker ~

~~~ May 23rd – July 30th 2009 ~~~

Some Things You Can Do

There are many things you can do to remember the deceased. Whether it’s a friend, parent, child ect. Here are just a few things that might help make it just that much easier.

A Guide for Those Helping Others with Grief

Don’t try to find the magic words or formula to eliminate the pain. Nothing can erase or minimize the painful tragedy your friend or loved one is facing. Your primary role at this time is simply to “be there”. Don’t worry about what to say or do, just be a presence that the person can lean on when needed.

Don’t try to minimize or make the person feel better. When we care about someone, we hate to see them in pain. Often we’ll say things like, “I know how you feel,” or “perhaps, it was for the best,” in order to minimize their hurt. While this can work in some instances, it never works with grief.

Help with responsibilities. Even though a life has stopped, life doesn’t. One of the best ways to help is to run errands, prepare food, take care of the kids, do laundry, and help with the simplest of maintenance.

Don’t expect the person to reach out to you. Many people say, “call me is there is anything I can do.” At this stage, the person who is grieving will be overwhelmed at the simple thought of picking up a phone. If you are close to this person, simple stop over and begin to help. People need this but don’t think to ask. There are many people who will be with you during the good times – but few that are there in life’s darkest hour.

Talk through decisions. While working through the grief process, many bereaved people report difficulty with the decision-making. Be a sounding board for your friend or loved one and help them think through decisions.

Don’t be afraid to say the name of the deceased. Those who have lost someone usually speak of them often, and believe it or not, need to hear the deceased’s name and stories. In fact, many grievers welcome this.

Remember that time does not heal all wounds. You friend or loved one will change because of what has happened. Everyone grieves differently. Some will be “fine” and then experience their true grief a year later, others grieve immediately. There are no timetables, no rules – be patient.

Remind the bereaved to take care of themselves. Eating, resting, and self-care are all difficult tasks when besieged by the taxing emotions of grief. You can help by keeping the house stocked with healthy foods that are already prepared or easy to prepare. Help with the laundry. Take over some errands so the bereaved can rest. However, do not push the bereaved to do things they may not be ready for. Many grievers say, “I wish they would just follow my lead.” While it may be upsetting to see the bereaved withdrawing from people and activities – it is normal. They will rejoin as they are ready.

Avoid judging. Don’t tell the person how to react or handle their emotions or situation. Simply let him/her know that you support their decisions and will help in any way possible.

Share a Meal. Since meal times can be especially lonely, invite the bereaved over regularly to share a meal or take a meal to their home. Consider inviting the bereaved out on important dates like the one-month Anniversary of the death, the deceased’s birthday, ect.

Make a list of everything the needs to be done with the bereaved. This could include everything from bill paying to plant watering. Prioritize these by importance. Help the bereaved complete as many tasks as possible. If there are many responsibilities, find one or more additional friends to support you.

Make a person commitment to help the one grieving get through this. After a death, many friendships change or disintegrate. People don’t know how to relate to the one who is grieving, or they get tired of being around someone who is sad. Vow to see your friend or loved one through this, to be there anchor in their darkest hour.

Excerpted from “I Wasn’t Ready to Say Goodbye”
by Brooke Noel and Pamela D. Blair, PhD (Sourcebooks, 2008)

This is something that helped me a lot, it’s an excerpt from a book and it encourages you to photo copy it and hand it out to your friends, I dug through my stuff and decided to share it with you guys because I know it helped a lot of my friends understand a little bit more about grieving and what I was going through.