by Sarah | Jan 14, 2011 | Fatherhood Fridays
I always feel lousy this time of year. And it is almost always depression, sinking its sharp teeth in me, and shaking me like a dog with a new toy. Even if I didn’t have the armload of mental issues that I do, this is always a tough time of year. The pressures of the holidays, the pressures at work, everything just becomes more intense in the winter.
I do love the winter, the hush that falls with the first snow early in the morning (I often go outside early just to experience this); bundling up my girls in scarves, hats, and coats; the refreshing chill in the morning. I don’t really care for the angry motorists who don’t scrape their windshields; the cars that blow up on their owners (personally speaking); the nasty brown slush that gets left behind; wet socks from all of the snow tramped in the house; and the claustrophobic feeling that occurs after hearing your kids tear around the inside of a very small house for weeks on end.
It does give me time to catch up on movie watching, of which I am and addict. It drives Sadie and the kids nuts because I like movies with blood, guns, action, guns shooting, gore, guns shooting people, kung fu, sci-fi, boobies, war epics, and scary flicks. Sadie usually puts on headphones and averts her eyes, as the sound of bone crunching mayhem makes her nauseous. Not me, the louder the better. Most of you readers are women as well, and will sympathize with my wife’s plight. Other have husbands who don’t watch such stuff, and I feel bad that they don’t know what they are missing. For example; in the new Rambo movie, blood doesn’t run, it explodes. I know, cool, right? I actually like some dramatic movies, but I can’t watch rom-coms/chick flicks. Sadie always wants me to write movie reviews, but I think most women would be bored to read about my take on “Troy”. If anyone were interested, let me know and I’ll try it.
I have a few things that I want to do this year, but I don’t want to call them resolutions. I hate new year resolutions, they never get resolved. But I would like to improve myself this year. Here are a few things I want to try:
- Exercise often and eat healthier. I can do this, but I haven’t been able to sustain very well. Right now, my overall health is horrible. I need to get a new ipod/mp3 player with an armband holder and I’ll be set.
- Play with the girls more often. I’m guilty of not sharing enough with them, and I want to fix it.
- Play, spend time with, try to understand the boy better and spend more time with him. Right now my patience is very short with him, and I feel a little(not a lot) bad about that.
- Groom and maintain my yard better. It looked great for several years, but the last two years it has looked like crap. A nicely filled out and trimmed yard makes me very happy and peaceful.
- Have a better all around attitude, especially at work. I’m a naturally negative person, and it’s tough to be smiley. But I can do it.
- Be better to my wife. I’m a very difficult person, owing a lot to my ocd habits, and she gets the brunt of it. She deserves better, and I should be capable of doing better for her. I love her.
That’s a few of the things I want to do. Maybe I can share more later. Wish me luck, I’m off to wok on ‘em. We’re due for a good year.
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When I approached Archie about writing this week, he didn’t know what to write. He felt “uncomfortable” writing aobut something outside of the kids. After a little explanation that this blog is about Redefining Perfect in every way, including our own lives…I managed to wrangle a post out of him. For those that don’t know, because I generally only mention it in passing on this blog – Archie has severe depression & anxiety disorders…as well as we believe that he actually is the genetic blueprint for Riley * her autism.
That being said, I always love having Archie post on my blog, and I hope you’ll all show him some love. He deserves it most of the time 😉
by Sarah | Dec 3, 2010 | All About Denver, All About Erik, All About Kennedy, All About Molly, Fatherhood Fridays
The holidays are always hard on me. I wasn’t the happiest or sunniest child, and that has carried over to adulthood. It always felt as if they snuck up and hit me in the back of the head, but then didn’t run away but stayed to continue doing it until February or March. There is some SAD to it, mixed with my own general depression/anxiety/obsessive-compulsive traits. Having kids has made it a lot better and I enjoy our Christmases together. As a parent, one of my biggest struggles has been to be upbeat and excited about the holidays throughout the year. Each year, I persevere, yet feel as if I leave too much for my wife to do. Sometimes it’s the way duties are separated in the household, each having mostly consistent roles and chores to be done. But nothing is ever written in stone.
Sadie is a SAHM, so most of the household duties fall to her; like dishes, laundry, cleaning, & cooking. I will occasionally do some of those, but never cooking(I’m a horrible cook). I usually take care of maintenance on the house & cars, do yard work, and of course, go to work daily to support all of us.
But when it comes to administering to the kids needs, physically and emotionally, both of us handle it together. Sadie is a bit more of a nurturer than I, but there are certain situations that I am better suited to address. And as for Sadie and myself, we have mostly balanced each other out well over the years. When I am struggling, she is able to keep from bottoming out. And when she is stressed past the limit, I am able to help her back to even ground.
What is hard about this year, and we try not to focus on the negative, is that our kids are having struggles with things we can’t help them with. We’re both still shell-shocked about Brandon’s preliminary diagnosis of CF, the reality is settling on us slowly, heavily. It was just so out of the blue, we thought to have him tested, but knew that nothing would come of it. I blame myself, but most parents do when something goes wrong for their kids. I know Sadie blames herself too, just a natural reaction. He is still getting high grades, wants to continue sports in the spring, and loves Boy Scout campouts. We think he is happy, or at least as happy as a twelve year old can express.
Angel having complications with her CF is not unexpected, but still is unsettling. How her function can go up and down so fast is scary, and makes us wonder if we’re not watching her close enough. Now she may have strep, although I don’t know the full ramifications of this yet. She gives us no symptoms or complaints until she is already well into sickness. However, she still has the brightest smiles and chatters about everything constantly. She can be read like an open book, but a book that you enjoy so much, you never want to put it down.
Riley is,…..well….we love Riley. As Sadie has posted, she has advanced and regressed at the same time. Riley is a whirlwind at home; usually blond hair flying behind her, fighting with and screaming at her sister, and talking so fast you can’t make anything out. In school, the reports are all saying that she is remaining on task better and learning LOTS of things. Infrequently at home, Riley withdraws into herself and just seems to vacate her body. This is usually when she is peaceful at home(not often). But she is slowly coming around to talking with us(REAL CONVERSATION MATERIAL). And she can be so loving sometimes, that her issues fade into the background.
I’m not saying that we have any more to deal with than any other parent. I’m just saying it’s tough, tough to be everything all the time. I have more respect now for my parents than I ever did before. Being a parent of children of special needs children is a hard job, but I have a feeling it won’t be the hardest thing I’ll ever do. That will be when they grow up and leave their mother and me.
I guess all I am really saying is love your kids. Love their strengths. Love their weaknesses. Love them as much as you can. Special needs or not, we are the lucky ones. Our children are alive and fighting, and we are in there fighting even harder along with them.
Enjoy your holidays!
by Sarah | Nov 12, 2010 | All About Erik, Fatherhood Fridays
Thanks to a little prodding early enough in the week, we’ve been granted a visit from Archie this week. I need to try to prod him more regularly. His posts are always a pleasure. This week he gives us a bit of a ‘state of the union’.
My wife likes me to write a guest blog occasionally, I lack the initiative to make it a regular thing. But I made it here today, so let’s see what obnoxious thoughts we can pour out of my head, without tainting you all further.
Sadie’s dad and I took Riley and Angel to the Father/Daughter Fall Ball this past weekend. I’m hoping that this will be the start of many, and that the girls will come to view it as special time with the old man. Right now, they were more interested in balloons and dancing to some teeny-bop music than slow dancing to “Butterfly Kisses” with their dad. But they had fun. I did too.
We then started the week with a meeting with the school psychologist for Riley. Nothing particularly revelatory, stuff we have known for a while and have been dealing with. But every time the diagnoses and the accompanying criteria are spelled out in front of us, it hurts just like the first time I heard my little gator was not okay. Monday was no exception. But the school has an IEP meeting scheduled for us next week to address Riley’s issues and how proceed in her best interest. I have more faith in our school system than Sadie, but that’s tentatively based on how Riley accepts the adjustments. What it really boils down to is that we are both concerned that Riley will fall in the cracks and get forgotten, and we are working to find the best option for her with the least amount of collateral damage.
The other kids are well. Sadie posts often that the boy is really growing up, and I couldn’t agree more. He is turning into a fine young man, and humility and decency are really starting to come out in him. He has always been smart, and he doesn’t seem to be afraid to use his intelligence. We couldn’t be prouder. Right now he has a broken arm and pneumonia, and although I am tired of hearing Nintendo DS and Mythbusters marathons, he still makes me very happy to have as a son. Unless he were to clean his room. Ever.
Angel is……..well, we love Angel. She has the widest range of emotion in all of us. She is the most charming child in our household, and represents our happiness at its core. We are lucky to have been given such a bright ray of sunshine, to light our faces and warm our souls. She alone represents the best in us, and sometimes the worst. I worry about her sometimes, but she usually makes me forget that by smiling in the most disarming way.
This week at Angel’s cf clinic, we discovered that her overall lung function has dropped alarmingly. She is now back on a whopping dose of medicines that she neither likes nor wants, and we as the parents have to make sure she toes the line. Thing is, we have not noticed any of the usual signs that she might be in distress including labored breathing, wheezing, tiredness, lethargy, etc.. She has less than a month to improve, and if she doesn’t, she will have to be admitted to the hospital. See why I worry about her? With her brother sick, I feel like hovering over her, even though that will likely irritate her. I love Riley Children’s Hospital, but I don’t want my baby there for Christmas. She needs to be home with her family. If she can’t be, then we will have Christmas at the hospital with her. Period.
A sometimes blessed, heartbreaking, chaotic, neurotic, emotional, and never quiet household. It helps to take my mind off the world at large, with all of the horrible things people do to each other in all forms. My heart bleeds when I read the news, but when I come home, I only need the three faces of my loved ones to smile at me and it all goes away. Even if just for awhile.
I am trying to write(fiction), but it is tough. I had a really good thread started, but it disappeared from my computer and I’ve been reluctant to start again. I envy my wife’s ability to create, but then women are made to create. I like working with old cars, although my skills are limited to finish work. I like to blow sh!t up sometimes too. Or shoot something with a gun. And drink a beer while doing any of the preceding. I belong to a good family, that always has room for more, if not in our house then certainly in our hearts. Come see us sometime.
by Sarah | Sep 3, 2010 | All About Erik, All About Molly, Autism, Crap, Fatherhood Fridays
This is not our first Fatherhood Friday. It’s just been a long time since Archie stepped up to this plate. I asked him to write a post on this subject, and have asked him to try to continue writing posts as time/inspiration allows. It’s always nice to get the other perspective from time to time 🙂
I’m writing this for a second point of view on our concerns for our daughter who has just started school.
I would like to say first of all that although my wife and I don’t agree on every aspect, I love her and respect what she has to say. No exceptions. I love our kids the same way, with no exceptions. Maybe I love them in different ways than each other, but no more or no less than the others. This will be about our middle child, Riley.
I knew the day would come where Riley would be old enough to go to school. My wife championed homeschooling, while I am a public education proponent. We both had sound logic in our choices, but eventually one of us would have to give way. Being small and comforting, the h/s milieu would provide stability and support as well as routine for Riley, as she loved things to be repetitious and consistent. Public school would give her interaction with other kids, lots of them, and would help her to mainstream, just be a standard kid.
By sheer persistence, I wore down Sarah to the point she would go along with me, albeit unconvinced I was making a good decision for Riley. So, she went to school.
Within the first few weeks, Riley lost her ability to remain calm. At school, the excessive noise(holy god, kindergarten is insanely noisy), the shuffling of many small bodies, the closeness of the setting, and the newness of it all burned through her coping mechanisms like wildfire. She literally hasn’t any defenses left. Any accomplishments she might make, are made nil by erratic behavior. She is suffering, trying desperately to keep from drowning, while the waves are just getting bigger.
At home, Riley isn’t much different. At times, she is silent, inconsistent, demanding, inconsolable, loud, and will take her stress out on the rest of us without warning. Those are a lot of harsh adjectives to describe my sweet, little girl. Make no mistake, I love my Riley more than the human heart is actually capable of handling.
And that was my downfall. I so wanted the “perfect”, “normal” life for her, that I became blind to who she was becoming in her own right. Before school began, we had a little girl, who despite being diagnosed as autistic, was capable of emotions and moods in the range of everyone else. Yes, at times she was a pistol. And there were some problems we were not capable of handling. But she was the best little girl she was ever capable of being, and more. And I overlooked it.
It’s easy to see where I went wrong, because I just wanted the best for Riley and didn’t want her to be burdened with the struggles I encountered at her age. But she isn’t me. She is her own, beautiful little person that has her own path to make. We will find the best way for her, with her as a guide to help us make sure we keep her first and us second. And her sister is coming along right behind with other special issues that will need to be met. So, this will help in the long run.
But I have the guilt of betraying my daughters faith and trust in me, I let her down. And I also have the guilt of letting my wife down by not listening to what she was telling me. As a parent, we all silently beat ourselves up over things we do to our kids that we wish didn’t.
So, here I am. I’m sorry, Riley, for not keeping you first and putting you in bad situation. And I’m sorry, Sarah, for not being the husband and father I should always strive to be. But, I promise to do better. I love you guys.
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*Must note – the picture above is a meld. On the left is Archie as a young boy, on the right, Riley.
by Sarah | Aug 28, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
The things we take for granted in our lives is amazing. We forget to stop and see the small miracles that occur every day, we just look for the big ones. I’m guilty of that when it comes to Riley. I thought she would grow and advance just like every other child. I didn’t want for her to have the problems I had to go through.
We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive.
After so many visits he was finally ready to tell us. The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS). My wife and I were stunned. It didn’t change how much we loved her, looked at her, or treated her – but I felt responsible. I was the one with all the problems growing up, and the lingering ones as an adult. My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical. No, if Riley was ill, it was because of me and my blasted genetics.
Riley was still not talking, or smiling much. But she was playing “outside” of herself. Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them. She did not like for anyone to initiate touching or hold her unless it was herself. We saw a little girl locked inside herself, and we had to find the keys.
As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs. She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed. She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers. My Riley was coming around, and I couldn’t have been prouder.
Riley began to talk, she had been saying some words, but now she was really talking. It was very difficult to understand her sometimes, at least for me. My wife spent all day with her and it was easier for her to pick up Riley’s speech. But she was improving. Her weight was always on the low side, but her height was average to tall. Her was growing, and it was long platinum blonde with curls at the end. Her hair was very fine, but it was healthy. Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel. She would give quick hugs, and sometimes we could kiss her. She was improving all the time, making big and small leaps in progress.
Today Riley is a little personality. She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.
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I apologize for the delay in the latest installment from Archie!! I kept forgetting to edit it. This was the final installment in the ‘Real Men Don’t Cry’ Portion. I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say! So Fatherhood Fridays are far from over!!
by Sarah | Aug 14, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
See Part 1 by clicking HERE
I never knew or met anyone who looked like me. Someone who shared certain traits. The connection was so amazing. I could look into her eyes and see myself, no longer alone. She was very special to me, in a way that most people would find hard to understand. I found redemption for past failures and a bright future was suddenly ahead of me.
Around 3-4 months old, Riley started crying after she ate. At first, we just thought it was indigestion, it would pass. But it didn’t. The crying soon turned into screaming, her muscles were tensed, and she was unable to be soothed.
A trip to the doctor soon turned into multiple trips, with fluoroscopes, tests, poking and prodding at my/our little girl. We were told that it was a simple diagnosis, silent acid reflux and it could be corrected easily with medication and close monitoring. That was okay, but she suffered for around three months in terrible pain and anguish, unable eat without it hurting her.
As she was getting better and able to eat without painful consequences, I started to notice that she was just not….right. She was now very quiet, withdrawn, never smiled, and physically she was wasted. Her doctor appointments were indicating no weight or height gains, even having lost weight at times. Her hair was lifeless and dull, eyes were glassy most of the time, and her only method of communication was crying in distress. She was drawing herself into a shell that neither my wife nor I could penetrate.
All of this time I was in complete panic mode. I finally had what I had been needing all of my life and she was slowly, painfully wasting away. Babies are supposed to be chubby and full, but she was bones and flesh. My wife and I supported each other as best we could, but I anguished terribly inside. I wondered if I didn’t get help for her soon enough, or if I failed to see the signs and in turn failed her.
I can’t explain how it feels to be so alone in the world, not really connected to anything. How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth. I had none of those things until Riley was born. Now I was in danger of losing that. Many sleepless nights, staring at the wall. What was to become of her, and me?
I know how selfish it sounds that my happiness was linked to hers, but that’s the way it was. For a while, we didn’t really know for sure that she was gonna make it. We met with other doctors, and then a geneticist. The geneticist was really able to help us with our fears and concerns. We didn’t like all of the answers, but he was honest and straightforward.
We bulked up her milk rations and worked constantly to improve her state of mind. One of her issues was revealed to be an oral aversion. She didn’t want food, she wouldn’t talk, and she would not let anyone look at her teeth which by this time were causing her some discomfort as they do all babies. But she never showed us or told us if something hurt, if she was happy, if she didn’t like something, nada. Zip. Nothing. The scariest for me part was not knowing if she was really in there or if she was gone forever. She looked like a little zombie most days. My heart ached and weighed three tons.
After several months, the added nutrients began to work, her hair started growing again, and had shine & luster to it. Her little body started to fill in just a bit, she would still be a skinny child given her parents, but we were okay with that. Anything but the bones that cast shadows. She was still withdrawn most of the time, but we began to see signs of life. She began to show interest in things outside of herself.
She could complete ten of the wooden type puzzles with letters, numbers, and shapes, at one time.
Amazing.
She didn’t so much play with her toys as she did organize them with razor sharp straightness. She walked at just under a year, which we felt was pretty good considering her delays. She walked on her tiptoes a lot, my wife thought she would become a dancer. She became frightened at loud sounds like motorcycles, hot rod cars, loud bangs or crashes, and would often cover her ears. She did like for the tv to be louder, so it basically drowned out other noise. It was difficult to get her attention; sometimes it seemed as if she were somewhere else. But we were slowly getting her back. I thanked whatever higher power that heard our pleas. I also began to relax, uncoil, and enjoy her.
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I am very grateful today is Fatherhood Friday and that Archie had stepped up with a post because I’m sick as a dog, and so are the girls. I will try to be back tomorrow – if not in time for my Weekly Winners – but there are no guarantees. I feel like death, just ask Archie.
