Double-edged Sword

Why I decided to write today I do not know. It was such a great relief all those years ago. I told myself, you need to start again. It heals you when you get what's inside, out on paper or even spoken aloud. As I saw pictures of the kids today, my mind took me back in time. A time when all 3 of my babies would laugh together. When Paige and Dalton would be so quirky to make Tadan laugh, to bring him joy, to bring him to a place of peace and make his life full of love. No sickness, no pain, no timer on his life.

Then I was flung back to me sitting on this couch, I started to think when did I cry last, do I even really remember his laugh or do I just think I do. So then frantically, I start going through videos to watch, to listen to his voice, his laugh.....I can't ever forget!!!

Ah....there's the cry I couldn't remember before, there's the grief that I hate when it hits. It's an overwhelming amount of fire, that burns my insides. The fire that makes it hard to breath and most times has me crawling on my hands and knees to the bathroom, the sickness comes. The fire that puts my face on the cold bathroom tile to cool me off, then I cry some more. I don't ever know how long these last, feels like hours.

Slowly my air comes back, the tears stop and as I regain myself, my body aches from the tightness of what just happened. I'm tired, I'm weak and then I'm angry. This is my life when grief decides it's time to release......And it FUCKING SUCKS! I don't understand when people say "It will get better".....no, it just gets farther apart! The pain is the same.

What happens is that double-edged sword begins to even out. I envision mine running up and down vertically. My love, my kids, my husband, my laughter, my joy, my family is at the bottom point but it's down there because it keeps me grounded, it's the heaviest, its stabilizes me, keeps me upright. My grief, my sadness, the emptiness from Tadan passing is right at the top, behind my head just hanging out. Always there, a companion on one or the other shoulder. Swaying from side to side but never getting enough momentum to bring me off balance. The bottom point is too strong!! The closest it gets are days like today when it goes horizontal. Bringing me to a stopping point, like not getting to walk through a narrow hallway, forward through life because the sword has turned. This is when I know I need to release, I need to let all my sadness, all my anger, all my anxiety, all my fears out, or I can't move forward. Once I do that, that sword begins to turn....my love, my family and all that joy begins to move and regain my stability. I can now walk down that narrow hallway.

That is what time does to grief, balances it out so you may live your life....but never eases the pain when it comes to visit. My sword is beautiful, strong...its ME!! On days like today it wavers, it bends but never breaks. I love and dislike my sword. Without it I wouldn't have the immense love for both the living and the dead, nor the pain or fear. That pain that visits shows me how powerful my love for my son was and is....but when my sword begins to balance back out I'm overwhelmed with all the love and powerful connections that I am so blessed to have with the ones with me now, to live out our lives, enjoy all the laughter, watch my children grow into adults, have a husband that is amazingly wonderful.....to LIVE! This kind of balance comes with time, comes with struggle.....But it does come.

I miss and love you Tadan everyday!

I love you my beautiful babies, my husband, my family....thank you for making life so amazing and full of joy. Thank you for your love!!

The dream I didn't expect.

It's been four years since I have blogged. Tadan passed April 26, 2012. The time that has gone by has been slow but a quick slow, if that makes sense. Some days seem to last forever as others happen in a blink of an eye. I have lost my way and then found it again. Paige and Dalton are teenagers now, they were so young when Tadan was sick so strange to think about. Tadan would be 10 this December and my mind cannot picture his face that old, but I guess that's how it's suppose to be, remembering his 5 year old face and not being able to think about what a 10 year old Tadan looks like. Kinda seems a bit harsh that your mind would want to do that to you but you do wonder. Even crossed my mind to do an aged picture of him but what really is the point, it wouldn't be realistic only a dream of a mother wanting to know what her son would look like older. I had a dream about him after he died. Was about six months after. I was getting upset as to why I hadn't seen him yet. Other things happened, like waking up at the time of his passing for about a month, then a dragonfly in the car-huge and blue, heard him yell "Momma" couple times and I would roll over half asleep expecting to see him laying there, and now every year on April 26 I wake up at time of passing but the dream....ugh. My own son scolded me but if you knew Tadan it's no surprise. He brought me back to his room at the hospice house. I was sitting on the edge of the bed as bright light came in through the window. He came to me a grown man but I couldn't see his whole face. His hair and mouth was all I could see. It was his voice but in a grown mans body, he chose this very specifically. He hovered in the light as he spoke, "Mom, stop rushing me, I'm busy"  I woke up cried and smiled all at once. I have dreamt of him since,  but why he was in those dreams I can only say he just wanted me to know he is here cause he would appear then be gone.  His scolding was hard but he told me what he is doing now, helping other kids whether sick or not get through hard times. Even it means being there when sick babies earn their wings. I hold on to those little glimpses I get of him and am very proud of how big his wings are. I miss him everyday but his story is not over. Much love and more to come Carisa

The tears dont come everyday anymore

As we come up on the third month since Tadan's passing I wonder if I should be crying more. I can go throughout my day and when it is coming to an end I realize that I have gone without crying. I will pause and take a moment to reflect on it, if I still feel ok about it I am able to go to sleep, other times though guilt will engulf me and I go down for a very good cry. There are days though that just looking at a picture in the house will make me cry so hard I get sick, which is a new one. It hasn't made me sick until just recently, I do not like those. The void of Tadan being gone has changed me and I honestly can not put into words how yet. It has shifted me in a way that I can't describe. I wish that just one more time I could feel him, kiss his chubby cheeks and smell his baby breath  I hurt everyday, ache for him to be here but do not cry everyday anymore. It is still very dreamlike, almost as if I had a nightmare and he was never here to begin with. His face, that smile and those eyes are implanted in my head and I scream his name asking why one so beautiful but that is exactly the reason why. He was pure beauty, love and innocence. A soul meant to take that journey, to reach into all of our hearts, grab on to teach it something new. I was working on my computer one day and had left it to do something, so I knew it would be asleep when I got back. As I walked into the living room there on the screen was a slide show running and it was on Tadan's baby pictures. I dropped to my knees, laughed and cried. Now my computer has never done this before and I did not set the slide show as a default. I think we can all make the assumption that Tadan played a part in this. It was beautiful and yet I was taken back by this, wondering how? Butterflies are everywhere, pennies being found, a dragonfly at Tadan's school-no water for it but it was there, clouds and rainbows. He has become everything and is everywhere, sending all his love for all of us to see and experience. Now I know the crying will subside even more but not ever fully go away, I will miss him always. He is living through all of us, giving us strength and love to live our lives with compassion and drive. Pushing us to overcome our fears and to take on challenges that before we wouldn't dare face. Tadan is a powerhouse that we must use everyday. He left something behind that is overwhelming wonderful, himself. He is here when the wind blows, as the sun rays come streaming through the clouds or that brush on your skin when you are all alone. The tears don't come everyday anymore but it hurts everyday so I am filling myself up with him in whatever I am doing. I enjoy the rush of knowing he just ran past me or sends me the beautiful rays from the sun. He sends signs telling us all he is ok and enjoying the wonders of things his mortal body would not allow. Warmth fills me up knowing this. Much Love to you all. I Love You Tadan!

Notes of my emotions

It has been a little over a week since Tadan's passing and I feel as though I'm in a dream. I knew the day would come when he would fly away but never did I think I would still feel the shock so deeply of him not being here. I knew he would leave and yet I am stunned that he did. I had accepted his journey and knew it would come so I do not know why I feel so overwhelmed that it actually happened.  I got so used to caring for him all day, I got used to him sleeping with me, I got used to the medicine schedule, I got used to never leaving the house. Now I have to get used to something else. Spending my time with my other two children is long over due and, yes, we will be doing alot together but what to do about my time for me? I can't answer that right now.
The feelings that bounce up and down about Tadan are strange, its hard to describe the loss of a child. You feel as though it isn't real that you will wake up or I will go into the living room and see his bed with him in it. I watch videos to see him smile and laugh, to hear him talk and cry. Even have some of him when he could walk. Its like I am forgetting already and he hasn't been gone that long, it makes me mad that my head is that clouded. I still hear him cry out for me, I did this when he was still here as well, when outside or in the shower, I would hear him and he was always sleeping when I looked, that has not gone away. I leave the house and get an urge to rush back home so I am not away from him long and then realize he isn't there anymore. I forgot my phone one day and panicked because I didn't have it if Tadan needed me but again realized he wouldn't cause he is where he doesn't need anyone to care for him because he is better and free. I asked myself so many times if it really was his time, I feel as though I helped him die faster because of all the medicines he had to have to keep him comfortable, that maybe he didn't need them and the medicine was making him like that. It makes me overwhelming sick to even think that is possible. But when I see pictures and videos of Tadan, I see how he declined in a way I never saw before because I saw him everyday. I now know the disease moved quickly this last few months.
The pastor from hospice told me he sees to often where parent and child will go through a difficult period in order to be able to let go. Tadan and I did the same. His confusion, agigtation, crying and screaming spells were horrible and gut wrenching. So I know my agigtation was, I'm sure, horrible to him. And by no means was I ever upset at him but I would just not know what to do anymore and walk away and yell at nothing. I told him I didn't know what he wanted or what to do, I think we were both lost. I also believe we had to get to that point to prepare us both for the hospice stay that soon came, we needed to able to let go of each other and know we did it together. I spent 3 nights telling him the same thing once the doctors told us hours to days. I told him I knew his frustration was never towards me and I asked him to forgive me for mine because I was never frustrated at him only the disease, that it was doing this to him. After the third night I told him I knew he had forgiven me and that our trials is what had to happen so he can let go and I can let go. I told him how sorry I was that he got sick and had to endure so much pain but that I knew he would touch the world for his strength, I would make him.

Now here it is June 10. I wrote the above one night when I couldn't sleep but never posted it. My emotions are now of guilt and anger. Guilty that I didn't hold him and mad because I was holding him at 2 in the morning but laid him back down and then he died as I was laying next to him with my arm over his chest thinking I would wake up if I felt his breathing go away but didnt and he passed at 4:30. I remember popping up real fast and looking at his neck, not seeing his pulse and yelled out "Tadan" knowing he wouldn't respond, felling his chest for a breath waiting for it to come, pushing the nurse button and still waiting to see his pulse. The nurse came in, checked and just shook her head and said he is gone, I laid my head on his chest, cried and said "No". Its so fresh in my mind how he looked when he died and when I was holding him, its implanted in my head so I look at pictures and videos to try and push that day a little farther away because I don't want to just see him that way, not all the time. It hurts. It was peaceful don't get me wrong, he was beautiful, still, calm, an angelic white color as if his wings gave his body a gift of beauty for us to see and so free but yet I knew that day would be the last day I would hold him until we meet again, which is too long. It is not dream-like anymore, the reality of Tadan being gone is very real. I hurt everyday but I do not cry everyday. I know my grief will have many faces and many steps but I will face them as Tadan faced his adversities. I will scream, cry and yell but another day will come and I will figure it out. No one faces grief the same but I do know their are many that will help and I need to learn how to cry in front of them to let the help in. My baby is gone and at the drop of a hat I can be on the floor crying so hard I can't breath but I can also feel as though he is holding me through it and picking me up off my feet to continue on, even though alot of the times once I'm done it doesn't feel as though it helped. Tadan has not come to me in my dreams yet, he has in other ways but I believe he hasn't because he feels I don't need him too yet or I am wanting it too badly. Almost as if he is letting me grieve and will come when I am able to take it in and smile knowing where he is now, I am happy he is free but am in a place where I want him back. The day he arrives to me will be the right day, he knows that.  I miss him, ache for him and feel as if he was just a dream I had one night, he left too soon.
Its getting close, the driving force is coming back. I have the urge but yet feel the weight of madness as what the force is for, Tadan is gone. That will very soon help me to push on with what we started. His strength was astounding, I can't and won't allow this funk to tarnish his legacy. I feel myself pulling out of the darkness, the dream, coming back into his light that he left to continue on. Its faint but I see it. He pushes a little everyday but allows me to properly go through the emotions, what an amazing little boy to have been blessed to hold, kiss, hug, laugh, cry, play with, and care for. Thank you Tadan for being my light, my son and you will continue to shine for me and guide me where I need to go. I Love You! Momma

Truth of Love

            As I look into the angelic eyes of my son, Tadan, I see... Love. Such purity that not even I can grasp. I think most people go through life looking at Love as just an emotion but it is Who We Are. Before Tadan was diagnosed and even before he started to get really bad, I hadn't caught on to what Love is, I now know. Love is what drives you to make decisions, even the bad ones cause whether good or bad Love has brought you to that path and you must choose. Love is that overwhelming pull of joy and fear of our children, Love is that fire for you partner, Love is that tingle in your toes when going in the right direction. Tadan came into my life and so many others to bless us with an abundance of joy, Love, smiles and to teach us what we thought we knew. Love is not the simple emotion that you turn on and off in a relationship or what you're suppose to do because you are a parent, its the core of us all, leading and guiding us throughout our lives. Tadan is the absolute purest of Loves I have ever seen. Many of the families I have met on this journey will tell you the same thing about their little ones that are sick from these Leukodystrophy diseases and so many others.
             When I lay down at night and place my forehead to Tadan's, we begin to breath each other in. He smells of baby's breath and I can feel the power he has even though his body is so weak-its his Love. I will stay like that as long as I can and even though I am breathing in some of the strongest Love, I can only hope my love that he is taking in can come even close to guide him through what is to come. The Love we have received from Tadan has shown me a strength I didn't know I had and that is to let people in with Love. I have always had walls to "protect" my heart-which is what I thought I was doing, being tough-no, without the walls, giving and receiving Love lets your "heart"(the core of us) grow, even when hurt, through grief, anger, confusion, stress and many other things that can break us a little. I heal, move on but now I'm stronger because of the power behind it-Love. We cannot hide from it or pretend that it isn't there because that will only deminish ones self. Some may then say if Love is who we are than so is Hate, true, but the difference is Hate I believe takes mind power to control it-and chosing to do so-when Love.... just simply is.
             Holding Tadan I wonder if he can feel my heartbeat as I feel his, which is a rythmn of the Love we share making a beat that I can hear throughout the day. Everyone of his features is like a perfect hand painting made just for me to admire, touch, and imprint in my mind so as not to forget. All that Tadan is was made 5 years ago to captivate so many, pull at the Love in each of us and make us think about things a whole lot differently. Everyone says they will never forget his eyes and most even say the eyes are the windows to ones soul, he is meant to show his soul, open up and bare the strongest of Love to us, latch on, teach us, show us what and who we are. As it seems to come closer to Tadan being at peace and free from this disease my Love seems to be on overdrive and I'm a little scared to show him all of it so as not to scare him because it comes with a river of tears as I talk to him about how much I love him, what he has done for so many and the love he is giving and receiving from family, friends and complete strangers. I know Tadan is in there even though I do not hear him or see some of what Tadan used to be, I see the Love of Tadan in his eyes. I am reminded daily of the blessing I hold, the gift of this beautiful child that has shown me and taught me how to live. Given me what I need to continue in life after he is gone knowing that I will live it with Love, dignity and teaching Paige and Dalton, and many others why he came to us and why he had to leave.  Tadan, at the very young age of 5 has taught me more than anyone else ever will, I have many years to learn from Paige and Dalton and I know they will teach me much more. Tadan has given us so much joy and heart warming lessons, he will forever be a guide as we live our lives. I can try to tell him but I bet to him he is saying, "Mom, this is how life is suppose to be, I didn't do much!" with a Tadan look and grin. As I try to think of how I can continue on and feel his Love after he is gone with not only memories, I think back of the time when he could walk (Paige Dalton and I were just talking about this) he would come to one of us, reach up his arms and say "Hold You". I will do the same, I will reach up my arms for him wherever he may be and say "Hold You" and let the Love in. Please feel free to do the same.

The "Medical" point of veiw

In this part I will put Tadan's disease as simply as I can so everyone can better understand what it is doing to him. Giving the name and medical definition would give people a headache unless of course you work in the medical field. Trust me when I first started my research I got headaches alot trying to understand not only the disease but the fact that something like this exists. CACH (Childhood Ataxia with diffuse Central Nervous System Hypomyelination) which is also called Vanishing White Matter Leukodystrophy is just one of 38 types of leukodystrophies and there are still more that have no name. CACH got its name in 2001 when a doctor by the name of Prof. M.S. van der Knaap found the five genes(elF2B) and their mutation were the cause of the disease. I will not get into genetics cause that could take all day :) CACH is inherited in an autosomal recessive manner, meaning it can run in the family. The mutation of the genes also comes from both parents. Thus I have a mutation and Tadan's father has a mutation, which neither one of us knew about and it was a 25% chance of passing our mutations on together to a child at the time of conception. RARE disease to say the least. Anyway these genes are necessary to properly make proteins in the body-(this was taken from vwmfoundation.org-eIF2B is a factor that is essential in the production of all proteins in the body. DNA is transcribed into RNA; RNA is translated into proteins. eIF2B plays an essential role in the initiation of translation of all proteins. It is also important in the regulation of protein synthesis), in CACH, changes in these genes cause a reduced function of the genes job. Tadan was about 2 when small noticable symptoms started. (His trouble with bowels at a younger age didn't get noticed until once he was diagnosed, we now know the disease attacked that first.) He was clumsy and held his right hand up, clenched fist, when trying to run. He never did get that full run. He fell often and then started to drag his right foot-the disease hit his right side first. Well, to say that he climbed the ladder of developmental stages, yes, but only got up to walk then right back down the ladder he came, losing the abilites backwards from getting them. He regressed back to crawling, then just sitting up, right hand went first then left, now he can barely hold his head up and relies on me for everything. The only abilities he hasn't lost is his speaking and eating by mouth, but some may say that his speech is gone cause not many can understand him anymore because it has become more difficult for him to express his speech properly. Even myself can have days where its hard to figure out what he is saying and I'm with him everyday, but I'm thankful that he can still express himself that way, for there will come a day that will stop as well.
When trying to explain how this disease works its best to compare it to a computer-as the doctor says. The grey part of your brain is like the main drive of a computer and the white matter of your brain is all the wires that run from the brain to your body or computer to the screen. As the white matter disappears those signals become interrupted or delayed. As more disappears its like open wires firing off without anywhere to go and live wire touching. Imagine your computer wires without the covering touching each other as you try to get online or send something to the printer, sparks would fly, right? Can you even possibly imagine what is going on inside Tadan's brain as it tries to send signals with no where to go. That's where the doctors came up with his "storms". Its the part of the day that after sending so many signals his brain just can't handle sending anymore and he has these episodes where he cries, screams and just doesn't know what he wants because his brain can't function properly. And through these storms I know Tadan is in there because every now and then he looks at me and says I don't know I don't know, he is telling me he doesn't know why this happening and he can't control it. Its absolutely heart wrenching to know he is in there, trapped at what his brain will not allow. The disease will slowly start to stop the signals to major organs. It has already started to affect his brain stem, we know this because he has spikes in fevers with no infections, the body's thermostat is in the brain stem. The brain stem sends and controls a lot of how we live. I have copied a definition so I didn't have to type all this ( In vertebrate anatomy the brainstem (or brain stem) is the posterior part of the brain, adjoining and structurally continuous with the spinal cord. The brain stem provides the main motor and sensory innervation to the face and neck via the cranial nerves. Though small, this is an extremely important part of the brain as the nerve connections of the motor and sensory systems from the main part of the brain to the rest of the body pass through the brain stem. This includes the corticospinal tract (motor), the posterior column-medial lemniscus pathway (fine touch, vibration sensation and proprioception) and the spinothalamic tract (pain, temperature, itch and crude touch). The brain stem also plays an important role in the regulation of cardiac and respiratory function. It also regulates the central nervous system, and is pivotal in maintaining consciousness and regulating the sleep cycle. ) So after reading all that how do you feel? It scares the hell out of me and I live it everyday. Actually I don't live it everyday, Tadan does, I just care for him, give him what he needs and make him as comfortable as I possible can. He lives in pain and we can't even begin to understand how much because he thinks its normal. He takes four scheduled medicines throughout the day and has five other medicines that I can give as needed for his "storms" or more intense pain. He has muscle spasms, neuropathic pain(which is like fire), tone we can't control-meaning his feet are tight, his ankles do not bend, his knees can barely bend anymore, his mid-section has begun to become harder and harder to bend-, the muscles in his throat don't get the signals to swallow properly-he has thickener for liquids and solids have started to become more difficult and must be small and soft- his jerks and motions are seizure like but I think the meds control those and he has been on Miralax since 20 months old to make sure he has bowel movements without struggle. He has begun to bite his fingers involuntary and he speaks out of character, like random thoughts being sent through his mouth when he doesn't want them too. I do not know what life will be like once this disease starts to shut down major organs but I do know that Tadan will handle it with the grace he has today. He could have cardiac arrest, get a fever or have a seizure that puts him in a coma or he could pass in his sleep. I just want peace and love to be with him whatever Death chooses because Tadan deserves nothing less. He has fought this disease with such courage and an attitude of not giving up that I have never seen in the strongest grown human being. He is a gift, a blessing, friend, teacher, nephew, grandchild, brother and son that has come to this earth to show so many what life is truely about. So much love for Tadan Charles Foss!

Fear

Saturday started out normal, Tadan was a little cranky so I knew it was probably going to be a bad day but was hoping I would at least make it to the store before any big meltdowns. Tadan got all his meds before I went and when I got back he was "ok". At 5:45 he began to hold his right arm and I knew he was in pain so I gave him morphine. After that, different jerks began to occur that I had not seen before and wondered if a seizure is starting. He tilted his head back and then grabbed his throat looked at me and said my throat, usually if his neck hurts he says his neck, but I still asked if it was inside and he said yes. I gave him a drink thinking maybe it was sore, he couldn't swallow it spit most of it out. I began to think oh my-his throat is closing up. A little panic started to sink in. I called Carousel(hospice), I was informed to give a couple other meds. But that didnt work he had spiraled into complete "storm"-brain was firing way too much and he wasn't making since, screaming, crying, jerking, hot.  My mom and Tadan's father made it over rather fast. He was in such distress that he wouldn't  take a breath, I picked him up and just kept saying breathe Tadan breathe and he was looking at me with such fear in eyes but yet had a look of, he was determined to get that breath. Once he took that breath I felt my knees buckle as I placed his bottom on the edge of his bed so I wouldn't drop him, I started to cry. I wanted to turn my head and vomit. I had told myself when the day comes that Tadan passes away I will let the Fear in for a second, accept it and then do what I need to do for Tadan. That did not happen, the Fear was too powerful and held on to me like I had been handcuffed to it, for it hasn't left my side. After the breath came I sat him back in his bed waiting for the nurse to arrive. Now through all of this Tadan had his eyes open, talking but not understanding him nor is he making since. All of sudden he closes his eyes and begins to say "no, no, no" over and over, then "I'm afraid, I'm afraid" and then "not yet not yet not yet". I asked if I wasn't the only one hearing this and they heard it too. When he started the not yets I sat in the chair beside his bed, put my hand over my mouth and just looked at Tadan, telling myself he can't go like this, he isn't suppose to go like this, what is the purpose of him dying like this, it should be peaceful . The Fear was weighing me down, blank at what to do now. Should I pick him and hold him or would that make it worse, I couldn't tell if he was in pain or if it was all the brain being out of control with signals. The "conversation" soon stopped but the "storm" did not. The nurse arrived looked in his throat to check for maybe an infection, no. Took his blood pressure and it was 142 over 107. Now I was told today that in children that number means in pain or anxiety is at its limit before moving on to a higher number. So now my question is if he hadn't have had the "conversation" would that number have gone up to cause cardiac arrest, its possible with this disease. I believe someone came to end his suffering but what I don't understand is why that way. Tadan was obviously not ready so he is still here to fulfill what he needs too. Fear however will be my handicap because if they came to put him at peace Sat evening but in a way I cannot understand, will they choose to do it the same way later, my only hope is that the answer is NO. Please no! My Fear of Tadan dying is not what I'm talking about, its how he dies. How can I accept an unpeaceful one, how does anyone? The last moments of Tadan's life should not be of screams, cries or jerking out of control. Another hurdle and more lessons, just when I think Tadan has shown me everything, he throws bigger and harder lessons at me to work through.  I have come to accept many things on this journey, but I will not know acceptance of this, for one-I can't unless it happens and two-I will forceable handcuff my other hand to Hope and Faith that he goes peacefully. Carisa <3