Why Jack Frost is not so friendly.

I have found myself, once again, drawn to my computer to write. It could be that I am actually beginning to find comfort in sharing my struggles, or maybe just getting it out helps me get back up on my feet and continue on. Either way, I jumped at the chance as soon as I put Ryder down for a nap. Not that he is sleeping, he is tearing his skin apart as we speak, but there isnt a thing I can do for him right now, that I haven't already done today, and I have already lost any patience I had so being in the same room, or even listening to the sounds he makes while he scratches, just makes me angry. Angry at him, even though this is not his fault, angry that I am the one dealing with this, and dealing with it alone. Angry that no matter what I do, no matter what I try, or change, or research I can't make it better, I can't make it go away, I can't help him at all. I can only watch him suffer and pray that we will make it and that this will all be a distant memory soon.But until then, I still find myself on my knees crying, or curled up in the fetal position wishing someone was here to do this for me, wondering why I can't find away to end this suffering now. I know that everyone says that God will not give you more then you can handle, but I am left wondering how much more is that?

So instead of listening to Ryder, I have turned on my new theme song- Stand- by Rascall Flatts. I've always found their songs healing and extremely relatable. I turned this one on the other day, by accident, and I realised how much I can relate to it. It brings tears to my eyes, but it brings me hope, and the understanding that I can't be the only one who has to deal with difficult challeneges.

I was discussing it yesterday, but I cannot decide what I hate more, the summer or the winter. Both bring with them major challenges for someone with eczema, and the people who have to care for them. Winter is dry, and the colder the air gets, the drier the air which means the drier Ryder's skin is. And I am not talking dry to the touch, I mean flaking off like a snake, like when you have a sunburn and you start to peel. Except his skin underneath is dry as well, and it is also covered in the red rash of his eczema. Summer brings to much humidity, heat and therefore, sweating. This doesn't seem to help to take away the dry skin that Ryder has, but it does bring out more of the red rash of the eczema and it increases the itchiness and the scratching. Plus there is the issue of shorts and t-shirts. Having skin showing on Ryder is like an invitation for the outside elements he is allergic to in the environment, and even the grass to tickle his legs and make him itchy. It is also an easy way for Ryder to access his skin, and therefore, do more harm to it then if he was covered from head to toe. I can't even take him swimming because the chlorine will dry his skin out and burn his rash, or a mini pool because plain water will also just dry out his skin. But, putting him in pants in the summer causes him to sweat more, get more of a red rash and scratch that much more. Add his seasonal allergies to this, and the summer is just a much of a challenge as the winter.

But today, I will be mad at winter. Ryder stayed at Gram's last night, so that I could have a solid night sleep, and I did. A solid 7 1/2 hrs and I woke up in a pretty good mood. I went into Ryder's room to lift the blinds, and I was not happy to find that his windows were covered in Mold! Less then a year ago we had had to close off Ryders room entirely from the rest of the house because there was mold in the wall around his window, and everything was tore out and replaced. So I was not impressed to see Mold in his room again. Not only can this be dangerous to anyone's health, but it can complicate his asthma, as well as be one of the triggers to his eczema. So instead of relaxing I was scrubbing windows. Ryder arrived home about 11, and I have spent basically every minute since then putting cream or vaseline on him, or rubbing his skin to exfoliate off the dead skin. If am not touching him, he is scratching. The air is alot drier at Gram's house, even with the 2 humidifyers running all of the time, and the water there is not the same as here, so I think that must have played a role. I hate this cold, dry weather, as it has now rendered me helpless in keeping up with the Eczema, and for now, without any opportunity to have some relief, because if I want to keep Ryder's skin in the best possible shape, I won't be able to send him to Gram's for a while.

With everything going on, and Ryder having some issues the past few months with his health, I have had to miss work 3 times already, and my fear is that it is only January, and there are many more bugs to go around before spring, and that I may be jeoparizing my job, my only source of any income that I have. I am forced to try to support Ryder and I and all of his health and medical needs while loosing hours. I am exhausted, loosing patience, and now have to deal with lawyers and documents and paperwork and receipts, just to provide food and shelter for Ryder, which he should be entitled to in the first place. Today is one of those days where I just want to shout to the world that "this isnt fair"!Why do the people who get up and walk away get to live a minimully stress free life, knowing someone is taking care of everything they left behind, while I have to add all of this stress, and hurt, and responsibility to my, already, overflowing plate that I call my life?

The hardest thing about being a single mom.

I think that the hardest part of being a single mom is that you are alone. Yes, I have amazing friends for support and questions,and even more amazing parents who do everything in their power to help me. But at the end of the day, after Ryder is in bed, I stand alone in a messy house,with dishes to do,clothes to wash,and a screaming two yr old to care for all night long because of his health issues,and I feel truly alone. Some families have different arrangements, and the other parent is still very involved in the child's life. Others, not as much,but live close by incase of emergency or need. I,however,am again, very much alone in this way. It is just me, the sole provider,in more ways then one. I have learned quickly to accept this, and I am not overly upset,or stressed by this. Until sickness strikes. Yes, my child has issues that keep him up at night, and is a great deal of work to handle during the day. This is a normal part of life to me, so I don't usually feel sorry for myself, at least, not any more. But when a cold strikes, like it has at our house the past few days, I find myself feeling extremely isolated, alone and stressed out. Ryder's dad is not involved in his daily life at all, except for his daily phone calls he makes in the middle of dinner every evening. He asks Ryder how his day was, what he ate,where he went. When I explain of sickness,or concerns about childcare,or anything that steers away from his 2 yr old conversation, I am ignored. As with any child with asthma, a cold can mean a few complications and some added worry. Also with Ryder his eczema poses a concern. Add a fever to the mix and the poor kid has been bright red, breathing with difficulty, plus all of the regular stuff associated with a cold. It took 3 days of high fever, a bottle of tylenol, a trip to the doctors, and 3 phone calls for Ryder's dad to begin to show his concern. A wise person told me that it is not because Ryder's dad doesn't care, but because he knows I will take care of everything. As a mother I find this difficult to understand, but deep down I know that it is true. But this simple act of, what I see as uncaring, leads me to feel that much more alone in the parenting world. When we started out, it was the two of us,making choices and decisions about Ryder. Then we discovered Ryder had eczema and would take a little more work, including 2 baths a day, alot of research and even more trial and error. After a few months of this, it quickly became apparent that this was only a job for one person, as the second person, the partner I had in parenting, quickly and easily gave over the burden of these things to me. As I went back to work, and Ryder became more of a challenge, with a list of ever changing allergies and issues associated with those allergies,I started to become resentful about having this enormous responsibility, and doing it alone.This was supposed to be a partnership, and I lost my partner. Looking back now, it was a blessing in disguise, as it prepared me to do this alone the day Ryder's dad text me and said it was over. I had a few bad days and then realised that I could do this alone, because I always had. Sure the first few months were awful, not because Ryder's dad wasn't there, but because I now had to figure out a new routine. How to juggle a new job, a new, possibly life threatening, situation for Ryder at daycare, and still get up all night with Ryder, care for all of his issues in the day, and still find time to research possible treatments for him that the doctor's hadnt yet found. I am happy to say, that after a few months, I finally feel like I have accomplished this, but it wasnt without a great deal of help and support, and more then a few phone conversations with a person who always has the right thing to say. So tonight, even though I feel alone, and more then a little frustrated that, even though I am only one half of the partner ship that created this wonderful child in the next room, I am the only one here trying to cope, I can be proud to think that I made it through something most people couldn't have handled as well. So a little cold, no problem-right:)

A night like any other

Tonight, as I sit here updating our life, Ryder is in bed crying, and of course, scratching. A few days ago, his hands were so itchy after nap he used his belt to scratch them. This caused about 6 huge gashes in his left hand, which look like a knife carved a tic tac toe game into his skin. The cuts didnt bleed but were deep enough to need antibiotic cream. They are beginning to heal but still hurt him.

The past few days have been hectic, to say the least. I couldn't go to clean a side job as Ryder's skin was bothering him to much to come with me, so I had to cram it into a day with another job. He has been up the past few nights more then a few times, and has had major issues getting to sleep, which is not common for him. Tuesday night he wasn't asleep until after 9pm,and that was with his medication, a drink of water,ignoring his cries and covering his body in cream 3 x, and he then continued to get up 6 more times throughout the night! I am exhausted, definetley running on fumes, and am listening to what sounds like will be a repeat of the beginning of my week.

His skin was better after spending today with Gram, but when I showed up his face got a little red, so I fear my hair products may be to blame. This is very upsetting, as I just found a new product that tames my hair and I love it, but I will be giving it up for the next week to see how it goes.

I chose not to send Ryder to daycare today, even though he was scheduled to go. There is a flu going around, and with his skin still not under control, I fear a flu would send any progress we have made the past 7 days I have been off, straight back to were we started. He does, however, have to go tommorro, so I am praying for room full of healthy, germ free adults and children!

Finding a balance

Tonight I am wondering what the point of putting a child to bed early is, when they end up scratching and crying past their regular bedtime anyway. Would have waiting that extra 1/2 hour have meant my sanity, or his skin? I am sure that when I finally go in after a half hour of listening to his sheets rustle, which means he is scratching his skin, that he will have rubbed off all of his creams, his face will be horribly torn apart, and he will be no more sleepy, but much more grumpy then when I put him to bed. I just have to remember...this is not his fault, he cannot help how he feels, and he must feel so uncomfortable. And the longer I leave him, the more pain he is in. But how do I find the balance between letting him fall asleep on his own or the destruction of his beautful baby skin??

I am also frustrated tonight because Ryder has been asking for a few days when his daddy will be coming to visit. His curiosity was spiked on the subject when Ryder's aunt,uncle and cousins(on his daddy's side) came for a visit today.This is usually something that Ryder and daddy do together. So tonight when Ryder talked to his dad he asked him when he would be home to c him, more or less in a two yr olds terms. Last friday his dad had said he was coming home next weekend(yesterday and today), and on friday, after I had mentioned something, he told me his plans had changed. Thanks for the notice, by the way. Would this have been mentioned or was this going to be the first no show? Thankfully I have always questioned Ryder's dads ability to keep his promises, and said nothing to Ryder. Tonight his dad had a long pause and then said he was going to "try" to come down next weekend. I quietly took the phone away and asked him not to make promises he cannot commit to. I know, through what I have heard thru the grapevine, that there is a party in kingston next weekend, so his "trying" to come down on the weekend will most likely be based on how hungover he is feeling. Ryder s dad also couldn't commit to the followng weekend, or the one after that,nor could he give any date, so unreliable will remain the title that he holds with me. 3 weeks between visits seem to be the going time frame these days, and no one, including Ryder or his dad, seems to be too upset with it, so I think this is the last time I will worry myself with it as well, because every minute Ryder isn't spending with his dad, is another minute of fun filled learning and adventures I can share with him, the person I love more then anything in this universe.

Someday I hope his dad will wake up and realise what he's given up. And, although I don't think that this will happen, I still take comfort in knowing that Ryder is young enough to not remember what it was like to have a two parent family, and that he already has amazing male role models in his life every day, to teach him everything, including creativity, hard work ethic, kindness, selflessness,and how to always take the high road, because you will always end up on top, no matter how hard it was to get there. Thank you Gramps and Uncle Rat.

More of a bad, then good,day.

Well, even with high hopes for the day, my patience wore thin very quickly, as did Ryder's and we didnt have a great day. It started off on a bad note because Ryder and I are both fighting a cold. He woke at 6:30am so I brought him into my bed for an extra hour or so, and I woke to him kicking me in the back and sides,to the point it hurt. When I asked him to stop he did it more and then cried, and continued to cry, because he realised I was not happy.

But we did start tiny tumblers today, Ryder's second extracuricular group activity! Knowing the smells from other people in an enclosed space could bother him, I decided it was not an option to skip bath this morning to save time, but when I went to run the tub, the water was brown and disgusting. So I lathered him in his 4 different creams, dug to find the most comfortable, 100% cotton clothes, that wouldn't fall off his bum I could find (which is quite a task since most jogging pants are 60% cotton, 40% polyester, which is a nightmare for eczema) and we were off. He scratched most of the way there, and only the distraction of his best friend Ky kept him temporarily busy.

Ryder was nervous at first, and as we did a circle time warm up he clung to me like glue. He finally let me set him down and we began to enjoy the class, which is only a half hour in length anyway, and soon after, the scratching started again. His forehead was flaking off, his cheeks were bright red and looked raw, and, as I realised to late, he started to sweat, which of course if I had of thought in advance I may not have registered him, as sweating gives him eczema!

He had me pull him off to the side twice, both times applying vaseline to seperate areas, hoping it would help us long enough to get through the class. Once they pulled out the ribbons Ryder was well distracted, and then we had banana muffins for snack, which are his new favorite, so there was a short time span of peace!

We had to skip out on tobboganing with friends so we could go to Grams house for a bath,and we had a fight to eat lunch, which he didn't, then we rushed home for nap, because the more tired Ryder is, the more he scratches, which in turn releases histamines, which makes him more itchy, which gives him more eczema............ He had a not so long nap, and when he woke he was grumpy as a bear. When Ryder is grumpy,or angry, aggitated, frustrated, sad or any other emotion out there, his release is to scratch, so imagine the circles we were running in today. We decided after some play to finally eat our lunch(it was 3:30pm by this time) so he could have another banana muffin and go buy a second cool mist humidifyer for the livingroom, with the hope that it will help clear up the eczema on his face.

Our outting took us to walmart, where the cashier commented that he had a rash. When I explained what it was she, like anyone else I talk to it seems, told me she used to have it, not as bad, when she was a kid. She told me about utter cream, the real stuff for cows from the co-op, which is one cream I haven't tried, so I am very interested to see how it works! Our next stop was Home Hardware, and a nice man in the parking lot saw I was struggling to carry the humidifyer box, 2 boxes of filters and a 2 yr old,so he offered to help. He recognised Ryder's eczema right away and was giving me helpful, (although already tried),suggestions, and said he grew out of it aswell. Thank you to this gentleman who helped me, when I didn't think I needed it. Ryder and I talked about you on the way home and how people should always go out of their way to help others when they can.

We stopped at home to grab some things and back over to Grams for tonight's bath, as our water issue is fixed, but will take a few days to be able to bath in. Gram made dinner for us, with only a few moments notice, and we enjoyed the visit, however the scratching continued through dinner, after bath and the entire way home, and as I sit here typing this I can hear Ryder scratching from his bedroom, and occassionally crying. I realise now, as well, that I didn't file his nails, which I do every single night, and I know that the result will be deep scratches, blood and scabs by morning.

I am ending tonight with positive prayers that Ryder will go to sleep soon, and by tommorro his skin will feel relief, and the dizzy spells I seem to be having will have passed!

The first day of the rest of our lives....

So looking back on the little notebook of baby facts that I kept for Ryder, I noticed that I only wrote down the positive! I am proud, thinking back now, that although I was exhausted and worried, I didn't waste my time focusing on the struggles, rather the things that Ryder did that made me smile!

I left my story last when Ryder began to drink cows milk formula. From what I remember, through the sleep deprived, hazy memories, is that we weined him with one bottle of formula a day. It only took about a week to have him fully on Enfamil. I didn't notice him sleeping any differently by this point, nor did I connect the constant waking and fussiness. Looking at it now,knowing what I know,it was probably because he was a newborn, and babies always wake up in the night, and are always fussy, and always cry alot, or so I thought.

From birth, Ryder had red cheeks,and what looked like a bumpy rash on his face. The family doctor told us it was baby acne,but as I did some research, and time went by, I started to doubt it. I remember his cheeks getting more and more red, especially when we were with other people,or he was hot. It was so red it looked like it was raw. I had already thought to change his laundry soap to an unscented, hypo allergenic brand,and tried some different baby soaps in the bath. Ryder also had incredibley dry skin, which peeled off like when you have a sun burn. Again, the doctor said this was normal, and who was I to argue, as I couldnt find an age limit on these things in my research.

January 3rd, Ryder's 2 month check up.Ryder weighed 11 lbs, 16 oz and was 23 inches long. I was proud of how well he was growing, since he was born so little. It was this appointment that the family doctor gave us some cortezone for his face, and we realised that Ryder had eczema. So, in the spirit of research, I hopped online, and ordered some books about children with eczema.

What I found online were horrible, heartwrenching stories and photos of children wrapped head to toe in guaze soaked in special ointment, hospitalised because their eczema was so bad that their eyes would crack and bleed when they blinked. It still brings tears to my eyes as I realise how blessed I am to have a child who,although has experienced a great deal of pain and discomfort, has not had to suffer in that way.

When the books arrived, what I read were first hand experiences, told by children with eczema. They spoke about how they couldn't go to birthday parties, or sleep overs,or play sports or do gym, and how people were scared to touch them, or wouldn't be friends with them because of how their skin looked. The incredible, brave stories told by these children who have suffered with such a painful and difficult condition from birth,were then ridiculed at school for it. It just makes me sad, and angry that we are bringing up our children without teaching them respect or to have the abilities to accept people who are "different", into the "normal" world.

It's always the little things that make it a great day.

Well, today I would classify as a great day. Ryder spent the night at Grams and I picked him up after a cleaning job. We had lunch and while he napped I got a few meals prepared for the week. Having a child with mulitple severe food allergies means that every meal is made from scratch, very few processed things go into his mouth, and it is extremely challenging, especially for someone who was never a good cook, or very creative!
After nap we baked banana muffins, as the ones we made last night he thought were "gross". Then Ryder was content to watch Mickey Mouse while I cleaned up the disaster. At bedtime he lasted about ten min before he started crying for me. As he has been going to sleep better the past month or 2 I went in. He told me he was done his nap:) So we read a couple of books. Franklin is one he got for christmas, and he seems to enjoy learning about the animals in the stories. We happened to be reading about a beaver and a moose, and we have two stuffies of those, so we brought them into bed with us. He named the moose moosey and as I was reading the story I saw that he was looking for something on the stuffy. I asked him what he was looking for and had to ask him to repeat it 4 times before I finally accepted that he was saying that moosey didnt have any balls!!!

Unneccesary Comments

So my plan with this blog is to tell the story of our life so far, however I also want a place to vent my daily frustration. Today Ryder and I went to Sobeys to pick up a few things. In the short amount of time we were there I had three complete strangers ask what was wrong with him. 2 thought he looked hot, as if I wouldnt notice his face, neck, and entire body for that matter, was covered in a red, swollen rash and take off his coat. One thought he was sick. I've also been asked if he is tired,and once I was even asked if he was contagious. The more frequently this happens the more I realise that, no matter how hard I try to make him feel normal, he isn't. Making his own food that is the same as what everyone else has, trying to let him nap in clothes at daycare, keeping his hair short so the vaseline isn't as obvious, non of these things will protect him when he is old enough to understand that people are talking about him, or staring at him, because of how he looks. He has something that the whole world can see, something that sets him apart from everyone else, and people do stare, they do comment, and they are worried its contagious. How will he ever learn to grow up without being self concsious when the entire world points out his differences. He is only 2, and already he has so many things against him. Yes, all are managable at this point, but emotionally, how do I prepare him for the things he will experience from the kids, and even teachers, when he goes to school?

Day One!

Well, this is day one of the new adventure I've decided to take on, and I am not sure where to begin! My goal with this blog is to, not only to write out my thoughts and experiences, but to share my life, the trials my son and I have experienced, the information I have gathered that will hopefully help somebody out there, as well as thank the great people I have met along the way.

It started in March,2007. I found out I was pregnant, and I was terrified! How would I ever be able to take care of a baby! Not only that, but how to go about raising an intelligent, kind, generous child, who can reach any dream, who will be successful, who can touch people in an amazing way. Where would I ever read about this! For anyone who knows me, I read alot,and about everything. Before I make a big decision, ok, even a little one, I research it!

Well, I made it through my pregnancy,which wasn't overly difficult, but I was not a happy pregnant woman, and delivered a gorgeous baby boy October 31, 2007 at 5:43pm. He weighed 6lbs,13 oz, we named him Ryder. He had some circulation problems, his feet wouldn't change from blue to red, so they took him off to the special care nursery. I was so full of drugs the only thing I really remember is laying in the delivery room, with a room full of my friends and their children, all dressed up in costumes. I was staring into space with, what I imagine to be, a ridiculous smile plastered on my face.

Looking back, I don't remember Ryder's dad in the delivery room at all! I know he was there, he and my sister both took the brave role of staying with me through the labour. I remember my sister holding my leg, dropping ice chips into my mouth, counting and coaching, but Ryder's dad I don't think said a word? Looking at him now, it doesnt surprise me, but I've just never thought about it before. But then, I didnt even have the sense to worry that my baby was rushed to the special care nursery, or that I only held him for two minutes,or to even ask a nurse how he was! I guess that is the benefit of the drugs, they don't allow your natural motherly instincts to kick in and send you into a full blown panic. Although, looking back, I am not sure I had those natural instincts everyone told me I would have the minute your baby arrives in the world.

By the time I arrived to my room, Ryder was there, in his tiny bassinet, swaddled up in the traditional hospital blanket with the pink and blue stripes, quietly sleeping away. I made his dad stay the night in those horrible "dad" chairs. You know the ones, they fold out into a too short, totally hard, smaller then a single, bed. I just didn't think I could ever deal with a crying baby all night, alone! But Ryder was the most content, quiet baby those first few nights.We had to wake him to feed him,and that was a challenge in itself! He was so sleepy I had to squeeze his cheeks and try to force him to suck on the bottle nipple!

After two nights in the hospital, which flew by, we were home. I was still taking the pain medication every 4 hours just so I could sit, but I was happy. I remember placing Ryder in the bassinet at the end of my bed, and then thinking, well now what? You watch all the shows on tv, where the couple are bombarded with visitors before they even get in the door,but where were my visitors? My friends and family wanted to give us space, but I didnt know what to do with myself, so I cleaned:) I know, I know, looking back I would kick my own butt and tell me to go have a nap! But the rush of finally having what you have been waiting for for 9 months got to me.

The next few weeks were like those of any new parent. Ryder's dad was laid off at the time, so we were both home. Ryder was a quiet baby, who only cried when he was hungry. I decided to pump breast milk and feed it from a bottle, and after 6 weeks of doing nothing but pumping for an hour, feeding for an hour, half hour sleep then doing it again, I was done. I felt so guilty for not being able to provide my son with "the best", but I couldn't survive mentally or physically, so we switched to cow s milk formula. Little did I know that this was the beginning of my nightmare, and the most difficult journey I would ever take, all based on,at least what I thought at the time was, one tiny decision.