It's Not Fair

None of this is fair...no one should have to live with this sort of pain in their hearts. I miss my son so bad and I just want him back. I want my life back and the person I was before he died. My heart is breaking every moment of every day as I live without him and it just isn't fair. Why did God have to take him? Haven't I been through enough in my life? Keep adding up the bad stuff to see how much I can take...is that the plan? I'm tired of being strong and being told to stay strong or that I can handle this since God gave it to me to deal with. I'd like to tell those who say that to me to live through it all and see how well they fair...they are lucky I get up every day and breath. I'm just so tired of being strong...none of this is fair and I am so tired of watching others get what they want and even be blessed beyond belief and they are not even nice people. I don't get it. Why didn't God have one miracle for my little boy? Why didn't he give him back to me? I want to be the mom I used to be, not the mom who is always missing part of herself. What ever happened to fair...I guess I should just take that word out of my vocabulary.

Why do I share these very negative feelings? First of all, it helps me to share these random thoughts that fly through my mind on a daily basis. Second, I want others to know they are not alone when they are having these feelings. Third, to allow others who don't walk this path, an insight to what we live with on a daily basis and hopefully allow you to be a kinder person to those who are walking this path. It doesn't make a difference as to how long the child has been gone, these feelings are all too real and even if you seem to handle it while inside you may not be. Often times we are expected to be strong and even told that by some of our closest friends and family which alienates us even further. Give us some slack often, we are strong way to long!

The holidays are coming and this is no longer a happy time for us. Yes we have things to be thankful for and other things we love but we also have things to be unthankful for with part of us living in heaven. Think of how you would feel. For myself, this year is even worse than last year was and I am just dreading the upcoming week for so many reasons. He was here two years ago and alive and I don't know if that is suppose to be easier but it isn't. There are suppose to be a house full of people here at my mom's and I can't even escape if I wanted to since I no longer have my own home to go to like I did last year. Going to be very hard for me. Christmas is even as bad so I am personally having a hard time right now...add in loosing my home and wham you have a holiday season not only filled with things to be thankful for but things to not be. When you have broken your leg, you are not thinking of your leg that is fine, you are thinking of the one that hurts...remember that if you are with someone who has suffered a great loss.

Take the time to remember the other children. So often, I try to make time for my other children but there are moments that I can't think past myself. There is nothing wrong with that and it took me so long to realize that I am not a failure as a mom but rather a great mom because of this. I need to care for myself before I can do that for anyone else. When I have to do this though, I do need people to step in and be there for the boys. So many other parents who suffer my fate, are also left to fend for themselves and somehow find it in themselves to try to be there for their kids even during moments when they barely have enough for themselves. We are not neglectful, we are in pain...imagine breaking both legs and being told to carry a stack of books with you everywhere.

If you know someone who has had a major loss, please think of them this holiday season as they are always hard, don't give them a hat, gift card, or other tangible gift. Give them the gift of understanding and think of something that can help them out without them having to ask for it. Often times a hug can mean more than any gift you can buy from a store!

Black and White

Why is it that seeing things in black and white makes things so much more real and harder to take. We got the paperwork saying the courts were definitely foreclosing on our home. I just stood there and my tears stained the white paper with black writing. It was final, the place we knew as our home is officially going away. The only place George knew as home is no longer going to be ours and it is like leaving a piece of him behind. I think the very thought of that breaks my heart by itself. Each of our children were brought home there and I remember each one of them and how much it meant to me. My heart is just so heavy.

I remember getting Joshua's diagnosis in the mail...yet again another black and while item that was made all to real. In my heart I knew he had Mito but nothing could prepare me for the moment I got it confirmed. Tears were rolling down my face as I sat alone at home with him and the school nurse called about the holidays...I'll never forget it. Through my tears I tried to keep it together as I had to hold a conversation. I almost made it through the conversation but her kindness and sense that something was wrong just broke the wall I was keeping up tumble down like children's blocks. Sobbing on the phone with a stranger was how I spent the moments I found out he had this disease officially.

My very first taste of this black and white reality was when my ex-husband was charged by the FBI. I tried to ignore it and did for so very long. This was my first eye opening experience to the world and when I began to realize life was not what I thought it was. Following that he was sentenced and that paperwork came in making me realize that he was leaving. The fairytale I had wanted in my life was forever gone...my life was flipped upside down and I had no idea how to handle it. I really thought that it would be the very worst thing that could happen to me in my life and I was so very wrong! My divorce paperwork followed and slammed shut any hopes I had left to remain blissfully unaware that life was hard and for me it was just the beginning.

The worst black and white papers that I have ever had were the ones that I had to sign giving permission to have my son's body cremated. No parent should ever have to sign a paper like that. The worst paper to ever read was his autopsy report. God it was awful...I knew what they were doing to my baby but seeing it in black and white just ripped my heart from my chest and does every time I even think of it. I still to this day am so thankful for Marsha, Gabrielle's god mother, for taking me to get them and just being there. Others had offered to go but I knew what I was going to read and that I needed someone who had read them before yet could help me to wrap my head all around it when I was hit by seeing in black and white what had happened to my son. Even now tears come to my eyes at the thought of it, I can even visualize the moment I read it and what the paper looked like.

I think part of the house is hard to leave for me because I feel as if we are leaving him behind. It is like we are leaving the good stuff all for a few moments of bad. The pain is so overwhelming at times and that paperwork was just enough to make me feel as if I just could not handle any more. I am so very tired. Being strong for so long and keeping it together has been so hard and I know I have ranted and shared my feelings openly but for the first time I just didn't know what to say or how to feel. It was like all the years before me and all those black and white moments came to me all at once and I just wanted to lay on the floor, close my eyes, and forget the rest of the world exists. Even now, all I want to be able to do is have time to myself but that is not possible. You see those spas where people go away for the weekend and stay there but get massages and all sorts of stuff...boy what I would give for that!!! I can dream:o)

For now, I am praying for God's presence and just the ability to make it day to day right now without loosing it. No one even knows how hard it is for me to make it to the end of a day right now. I find myself walking around having to fight back tears randomly and not for anything but feeling so overwhelmed. This is just not something that counseling can fix. I know why I am here and in this position/mental mind set. Sometimes I think that we need to just be allowed to be sad or feel the need to not keep it together all the times. So often people think we need to walk around happy all the time and if you are sad or having a bad day you need meds or you need counseling. Often times I think people say this because they can't handle seeing you this way. It is when you let it consume your life for a very long time that it is a problem.

Yes I can be sad...my son is dead! He is dead and unless your child is dead you don't get it and those who have a dead child are the ones who understand your feelings and would never even say that to you or expect it of you. On top of it every day I deal with a life-threatening disease for myself and my children...it is scary. I worry for myself and my children. My body aches and hurts and I am just exhausted yet I am expected to keep going without complaint or mentioning it because somehow someone has to one up me on their pain. I had my home taken over by the FBI and my ex husband arrested and found that the person I trusted was not worthy of that. Every day I walk a path that many don't understand yet feel the ability to judge me and think that I am a looser/lazy and yet they have no idea of all that I do even though I struggle financially, I don't lack heart and give of that freely!

I need a break from all the black and white in your face moments that just drain you of any color you once had. It is very hard for me right now and I am having a tough time right now. I walk around with a smile on my face but inside I am drained and empty. Each day I push through with very little energy and every last bit of it is sucked out by the end of the day even though I may have really used what I had to give the moment I woke. Life is hard and for a while I am going to be seeking color rather than black and white. I guess that is why God sent a rainbow after the dull gloomy rain.

Moments of Remembrance

These past two days have really been full of moments where I have been remembering George. Gabrielle has been very fussy since she has hand foot mouth virus and is also teething. She has been very clingy. Hugh was working late the other night and my mom and I were both taking turns trying to get her to stop crying. I got her to calm down and she laid her head on my chest just like George used to do...she tucked herself right under my neck where he used to lay his beautiful head. Gabby is usually one to put her head on your shoulder, but George loved being tucked under my chin. With that, the tears just rolled down my face.

I've had several moments like this throughout the last few days. My mom and I were talking about a picture of him and how in this pic he looks so different. You could see his personality in it. He was so happy and smiling. I remember the picture being from his very first smile. He would only smile for me and poor Hugh was kind of upset but took pictures. I can remember moments vividly like his first smile and of course that brought tears to my eyes. So often I am reminded of how much I miss him. I'm still at peace with his death but that doesn't take away the pain left here by his death. I know it may seem odd or you may not be able to understand that but I don't know any other way to explain it to anyone.

I have just been taken back by how much he has been on my mind lately. The whole holiday thing is probably the culprit along with his death date coming up. He will be gone for 2 years and just looking at that time lapse is painful. It is so hard to think we have had to live life that long without him. I know that number will only grow and saddens me because that number is already well past the age he got to live. For me that is such a hard thing to see...he should have been able to live to the age of two but didn't even get to see 1 year. I think that may be why Gabby's first birthday means so much to me...it's like I finally get to celebrate that milestone. It has become a huge milestone for me and my family.

I do thank God for Gabrielle and all the joy she brings to our family. She isn't living life for George but it is like he shows through her and I know he is watching over her. My heart goes out to those who cannot have another child after loosing one if they want one. Today another angel mommy is going through a tubal reversal in hopes to have her own rainbow. These babies are so very special because they bring so much to a family. They are never had to replace their older sibling but because the family feels God's presence in their life to bring joy after all the pain. It is not easy to have a rainbow by any means no matter how hard it is to even get pregnant with them, it is no easy emotional road to raise them and yet as hard as it is, the joy they bring is a million times more than ever explainable. Please pray for this mom today and that God be with her as she goes through this.

Missing my Monkey!

Today I am really missing my boy. We went to church and for the first time in a while I went to the place where we buried some of his ashes. When we placed them there I thought it would be more spiritual for me than it has become. I think it is hard for me because there is nothing there acknowledging he is there and that really is hard for me and hurts. I look at the empty spaces on the plaque that lists others who have passed but none for my little boy. We've asked several times to have his name added even if we need to pay for it, but now, almost two years later, his name is still not there.

Going to that spot and not seeing his name adds a sadness to my heart so I often times don't visit his resting spot. I feel bad but I just can't handle the added pain and loss that I feel by this. It is like the mom's who wait patiently for their child's headstone. There is some odd peace brought just by having that acknowledgement that says your child is there. Even if everyone else forgets them, there is some acknowledgement that they did exist. With George, since his time here was so short, it sometimes feels like he wasn't here, and not seeing his name is like he didn't.

Anyway, I visited his resting spot. There was decorations to the right of where he was buried for a woman who I sang for her funeral. I took a flower from a pot of mums that were next to the spot he was placed. Tears welled in my eyes as I remember the day I laid him there. I will never forget being handed the small urn with his ashes and not wanting to place them there. It was the acknowledgement that it was for real and my son was really dead. I wanted him back and didn't want to place his little body parts into the cold ground and yet there I was,his mommy, having to place him there myself. No one should have to bury their child, it just isn't fair and there is nothing more painful and hard to do.

I miss his simile, his laugh, and just the way he laid on my chest. It hurts that it is all gone...he is gone and I will never have him back. Sometimes, I can't even remember those things and that hurts even more...it is as if you are loosing them all over again. Gabrielle however, helps me to remember when she does those things. I couldn't love anyone more than I love that little girl. Gabby has a special place in my heart and there is so much more meaning in watching her grow up than I ever had with the other kids. I now have even a deeper appreciation for the crazy things the boys do like when Michael dose things like make it snow in his room or cracks eggs to find a baby chick, or tries to keep a worm as a pet.(yes he really did all these things).

When I am upset, I tend to cook. Today I cooked up a storm with chicken noodle soup, stuffed cabbage stew, pizza, and pumpkin muffins. While I did that I thought of my little monkey and also about an older woman at our church. Her husband died not that long ago and today they were dedicating the new keyboard in his memory. She held it together and I could see deep in her eyes how very hard it was for her to do. After service we went down and had our usual bagels and doughnuts. This woman's family was there and they were leaving. She came to get her coat, which was where we were sitting. I stood up and just hugged her and told her that I pray for her all the time and think of her too. While I was cooking my pain away, I thought about her and the fact that I want to take her some of the things I made. I can't imagine being all alone through such a difficult loss. I know how lost I feel and I am surrounded by people.

Grief is such an odd thing with no rhyme or reason. The person who came up with the steps of grief should be shot in my opinion. It sets people up to feel like they are failures if they don't get to the end of that list or in the same order. Your feelings are forever so there really is no end like they say there is. It sets you up to think that there is an end to all that you are feeling and that is so wrong. Gotta love when we try to make sense of something that isn't meant to be understood.

I miss my boy...it hurts...I cry...I want him back...it isn't fair...I love him so much...I miss my Monkey!

Moving Foward

I have really been thinking a lot about the house and all that has happened to our family. It has been no easy road and no matter what, we have to keep moving forward even if we don't want to. I came to find that the reason I have had such a hard time is because I feel as if the house is still lingering over our head. Once the house is gone completely and is emptied, I think it will be a lot easier to move forward. It is kind of like our hearts are in two different places right now. Going there just brings so many emotions and is very hard to handle at times.

I don't know how to leave the life we knew behind. There is a certain attachment to the place especially since it was the only place George knew as home and he died there. I know he was taken to the hospital but they never did get a heartbeat or breathing from him so he really died at home. I still call the place home and am not yet completely settled here at my parents. I do however feel that once the house is gone that we will be able to move forward because we will have no choice but to do so. It is just so hard to leave it all behind and just walk away from our past. I know that the future is what really matters but the past is what has helped mold us into the individuals that we become. It is like leaving yourself behind in some capacity, and my heart could not be heavier at times. We are hoping to be moved out by Thanksgiving so we can move on with life and all of us can go forward.

That being said, I went to the doctors yesterday to find out a plan of action with him to help my physical issues. He is thankfully a doc willing to listen and work with me. He has ordered several tests and lab work and wants to do a baseline work up to see where I am with the disease right now. He also gave me a medication to help with the muscle spasms and nerve based issues I have been having. It seems to work so far. They have decreased but I can also still go up on dosing since it is one of those meds that it is trial and error with. . It doesn't help with any of the pain but it helps with the other stuff for now. There is definitely something wrong with my abdomen since the doc felt the same thing that I did and is probably a hernia or something so I am going to have a cat scan done. It is very painful at times and sometimes the pain meds don't work and I have to take a stronger one. Please just keep me in your prayers as I go through all this testing and try to find the right meds and things for me to be on.

Yesterday I went to look at a venue for Gabrielle's birthday part. It is really nice and right in the complex my mother in law lives. I'm very excited for her birthday party. It just is a huge milestone for her and us as a family. With George not getting to see his first birthday there is some sort of peace that we have never had, I am hoping we will gain that. It is going to be a blast and I just can't wait. We have so many fun things planned and really want to make this special for everyone.

The two of us also went to her doctors appt and then to lunch. I think I may have talked her into getting a newer car since she has no heat or air conditioning in hers. The poor woman is so afraid to get one because of having to have payments and that is her biggest worry. If I had the money I would get her one that was something she didn't need to worry about repairs for but that was reasonably priced. I told her that she can get a good new used car and that Hugh and I could take her around. It is so hard to watch her struggle and not be able to really help her where she needs to be helped. She is so emotional and I feel for her on so many levels. I wish she was better at telling others than Hugh and I the truth about how she feels. She feels so obligated to tell people what they want to hear and does not live for herself. Hugh and I are the only to people she is really herself with and although I am honored by that it causes so many issues that it drives me crazy at times.

She also told me how Hugh's siblings and her had talked about her final life plans. I found that she wants me to plan her service. When I got home and told Hugh, he was actually quite upset since he was not included in on the whole thing and feels like it is watching his father's plans happen all over again. My heart goes out to him and there is nothing I can do to make it any better. I did offer her the opportunity to be placed with George in his urn and she said she would love that as she teared up. With that she said she would like to put some of her ashes up near where she had grown up as a child and the rest put with George. She asked me to help her with her living will since I have done them before for Frank and others so I told her I would do it with her. I don't know why but I have some sinking feeling that when she dies it is just going to be a mess but I hope that I am wrong.

We will see where things go from here but I am now trying to focus on moving forward and helping our family through all that is about to happen to us all.

Quite Hours of the Morning

Today the kids have off from school and Hugh is already off to work. Gabby and I are the only ones up in the house. The house is eerily quiet for this time of morning. It suddenly brought me back to the morning George died. It was that same silence as I got Richard off to school that morning. I was going to check on him but thought twice about it since I knew if I woke him up Hugh would have been mad since I had to go back to work. Mornings like these are the mornings that I just miss George terribly and get those random panic attacks still.

We are hard at work right now collecting items to make Christmas stockings for the homeless. I've been fortunate enough to have collected enough fabric to make the 100 stockings that I have. With the kids off, I want to let them help so I think we might start having them trace out the pieces since we will need about 200 pieces. They are excited to start this since they all love the holiday season. I'm still looking for items to fill the stockings with but a few people have been generous enough to give me their travel size items they collect from hotels. It is actually quite exciting to be working on this project.

Added into the project is prep for Gabrielle's 1st birthday. I am very excited about it and can't wait to celebrate it, I just hope others realize how important it is to us and show up. It is during the Christmas season when so many people are busy but I am really praying they can take a few hours to celebrate this momentous occasion with us. I sent out save the dates a few weeks back but I'm not sure if that helped any. It is so hard sometimes to realize that not everyone you care about can make something like this even if they know how much it means to you. We understand that others make plans but when it is family sometimes it is a hard pill to swallow and even though you try hard, you are still disappointed. In the end though, I try to remember that this is very special and we are grateful for those who can come to celebrate such a wonderful thing with our family.

The other big project we have going on here is moving all our things. Hugh and my dad are going to finish putting shingles on the shed so we can finish moving items. I want to have everything we are taking with us out of the old house by Thanksgiving. Its so hard to do it sometimes because it is very emotional. Going over there takes a lot out of you by the end of the day and its not because of moving things but rather the emotions involved. The other day the kids said that they changed their minds and wanted to move back in the house and it just broke my heart to hear this. Even being at my mom's house, although I grew up here, it just doesn't feel like my own home. I am thankful for the basement since it does give me a place to decorate with things from our family and make it a little like our own space. The other day I bought some new spatulas for the kitchen here and I felt compelled to ask my mom if it was ok that I threw the junky ones out. That's the stupid little stuff that kind of makes it hard or to feel like it isn't really our home.

My parents are wonderful with the kids, all things considering. I know they are done this age of child rearing so there are times it is hard for them. The kids even test my patience and I try to keep in mind that they are only kids but I always feel like I have to keep them out of the way or try to make sure they don't bother my parents. The kids have been really tough lately and have been making that extremely hard to do, and it is so exhausting on my part. I can feel the effects of my own disease as they get worse and I try to work through them but at the days end I just want to fall apart. Today I go to the doctor for myself to try and talk to him about getting some of these symptoms under control so that I don't feel so lousy...I don't have time for this as a mom of 5. The sever pain is taking it's toll and now is affecting my sleep by waking me up with shooting and throbbing pain, not to mention the muscle spasms all the time. I'm so tired during the day that I have to nap but feel so bad for doing it and leaving the kids with my mom.

My biggest concern is the heart palpitations that have become more frequent since 40% of mito patients have heart problems. I've had this my whole life but it is just becoming more frequent and can be scary when it happens. Often I don't let on that I am having these problems and try to work through them without giving much indication that they are a factor. I hate when I loose control of my muscles and I just start to get the shakes and spasms for an extended period of time because those are the hardest to cover up. I want to be my "normal" self but it is becoming harder and harder as time goes on to do that and if I'm being honest, it scares me not only for myself but also for my family. I know how much everyone depends on me but it is just getting harder and harder to live up to everyone's expectations of me. It is already bad enough that people talk about me and judge me, I'm really trying to not add this to the mix to give them more ammunition. It emotionally hurts and I already have enough of that no matter how much I "Know better" it doesn't change how it can hurt when someone thinks of you in a negative way by no fault of your own.

It is also a little more difficult because Hugh's job is a physical job and it is taking its toll on him. He is into his busy season and they are having to unload trucks almost every day. By the time he gets home, he is exhausted and doesn't have much left in himself to give to the kids and I. He often will get short with the kids and I without realizing it and with all the other added stressors of the house and things like that, I am sure he is just overwhelmed. His mom also calls him to come take her trash out and do things around her apartment while he is trying to find a way to juggle all the things we need to finish here and the kids with the crazy behavior lately. Please keep us in your prayers as we all work through these tough times and that it is only temporary. Also pray that these other ministries we feel called to touch the lives of others in need and who are also feeling much like we are by letting them know someone does care and we recognize that there are others in worse positions than we are. Please also pray for the kids and their behavior, I don't know if it is the house/emotional issues or if it is part of their disease. Thank you in advance for your prayers they really do mean a lot!

George's Guardian's of Grace Stocking Project

We are now in full force collecting items to create 100 stockings to send to Camden for the homeless. I had posted a need for items on Freecycle and got a pretty good response. The gentleman from our church who handles this ministry said he thought it was a good idea and gave me a general count of 80-100 so I want to shoot for 100 because I don't want to leave anyone without a stocking.

If you are interested in helping with this project and have some items laying around, I'd gladly come get them or put them to good use if you would like to mail them to us. Below is the items I happen to need.

Need:

Hotel/travel size hygiene products.
Fabric to make stockings
Candy Canes
Toothbrushes
Anything else you think we could use to fill them (dollar vouchers for McDonalds/fastfood place)

If you happen to have someone in heaven that you would like to remember or someone fighting some disease, and you feel compelled to help with this project we can add their name to the tags I plan to put on the stockings. These people will not get anything for the holidays and the more we get to fill these stockings the better. Please prayerfully consider supporting our efforts. I know George is smiling down on us as we do this project in his memory for the holiday season, this is really what it is all about. You don't have to have money to change the world or make an impact in the lives of others!