Christmas

When I was growing up, Christmas was always a much anticipated time for my sister's and I. We tried to stay up late to catch Santa filling our stockings, woke up early to see what had been brought, we ALWAYS went to Christmas Eve service at our church (where we were always given an orange and some Wrigley's gum before we left). And we spent time with each other and our extended family.

Traditions change. Being married, you try to incorporate both spouse's traditions and in doing so, you create new traditions.

I love Christmas. I love the meaning behind it, the magic behind it, and the love behind it. It was a joy to watch Kyle wake up Christmas morning to see what Santa brought, see where the damn elf was hiding (thanks for buying that Mom......), and see his excitement for everything involved. David has never appreciated Christmas morning, known what Christmas was about, or cared to be involved in a long and exhausting day visiting with family. But we drag that silly teenager along with us for the ride anyway.

This year, Kyle knows. He knows who really brings the presents, who really moves the elf, and who doesn't come down a chimney. It's our first year of new traditions here. I'm a little sad. But in actuality, my life is a little easier because of that. Just simpler.

I would have been glad to leave the elf on the shelf this year. But Kyle insisted he wanted to move it. It's December 5th. The elf returned shortly after Thanksgiving and he has already forgotten to move it numerous times (maybe it'll make him appreciate how hard it was for us to remember). He's going to help me fill Michael & David's stockings this year to take to Grandma & Grandpa's Christmas morning. He helped me wrap a few gifts.

Looking back at all of these pictures........I see change.  We've moved the location of the tree several times. The kids have GROWN. A lot. We've lost dogs. Most of the big gifts in these pictures are no longer in our home. They've been outgrown and donated or trashed.

I also see consistency. I see gifts the kids need/want under the tree. I see excitement (yet sometimes sleepy) on Kyle's face. I see love.

And while the traditions have slightly changed, the people haven't. I see the same families in the pictures. I see the growth of adding new babies and new pups to our lives. I see cousins who love each other and use Christmas as a time to grow closer to each other.

As the years go on, we will see more change. More growth and probably more loss. But the love will remain the same.

I know that my kids haven't always had a "perfect" Christmas. I've forgotten gifts in the closet, bought things they already own, spent time in a hospital for the holidays with David, yelled at them for stupid stuff because by Christmas morning, every mother's patience has been lost and they just want their kids to LISTEN, wanted to nap instead of opening gifts, and many other seemingly unforgivable things.

But they've always had Christmas. Not perfect. But memorable. And loving. And magical. And enchanting. Some kiddos don't have those things. But mine do. And I feel so lucky.

This year will be more of the same. Imperfect, but perfect. Because we have each other. And we're making memories.


And yes. Right now we are the house on the street with half of our Christmas lights out. We're debating just letting it stay that way or just taking them down. Either way......it'll make a memory.

Weary

I'm tired.

I'm not always happy.

I've gained weight.

I've become weak.

I don't exercise enough.

I don't cook healthy meals every night.

I can't do this alone.

Let's start with I'm tired. The average amount of sleep I get per night is 3-4 hours. It never fails that after almost exactly 2 hours of sleep, I wake up. Doesn't matter how tired I am. Doesn't matter what time I woke up that morning or what time I went to bed that night. It doesn't matter what I've eaten of drank. Every gosh darn night. I'm awake. I've tried everything except prescription medication. It doesn't work. My mind is my enemy in the middle of the night.

But despite being tired, I'm still functioning. I'm still making it through my days. And I'm accomplishing daily tasks and making it to work. I am TRYING to sleep at night. It doesn't work. But I'm still trying. And at the end of the day, I do know there are prescription medications that could help me. I am not at the end of my options. I have just chosen to not go that route at this time. I'm just blessed to be able to open my eyes everyday and be alive.

I'm not always happy. I fake it a lot. I put a smile on for the kids, for friends, for family. But sometimes I cry. For hours. This life I live sometimes makes me sad. Sometimes it makes me angry. Sometimes I could scream from the roof tops that I'm done with it. Happiness isn't always a choice for me. Sometimes my sadness & anxiety takes over and I stay on the couch for numerous hours to drown it.

And while I'm not ALWAYS happy, I am happy. My kids bring my joy. Their smiles are so special to me. My anxiety is getting a little better. I finally admitted to myself that I needed help. And it's helping. I love my life even though it's hard and sad at times.

I've gained weight. I lost 30 pounds more than a year ago. But I gained back 20 of those pounds. My clothes don't fit me like they did. I eat when I'm sad. I eat when I'm stressed. I eat too late at night. I eat cookie dough for breakfast. I love food and trying new recipes when I'm in the mood. Taking selfies to promote my Younique business KILLS me because I can see the weight gain in my face. It takes about 50 tries before I find one that I'll actually use and even then, I cringe when I post it.

And while I know I've gained weight, I will tackle it again. It might not be today or tomorrow. But it will be a priority again to me one day.  I am blessed to have food for myself, and my family. I love to enjoy food. And even though my confidence is shaken and posting pictures of myself is terribly hard, I still do it. It helps my business and it helps my confidence when I do get those craved notifications on my social media accounts that someone has liked or commented on it. It's not about narcissism, it's about confidence. Like other's selfies. It's not about attention, it's about letting them know they are beautiful and brave to post those.

I've become weak. I'm getting older. I'm falling and bruise easily. I definitely feel like my body is much weaker than it was 10 years ago. Lifting David is a huge burden. I'm terrified of bones breaking because it would hinder my care for him. I can't even give him a proper bath anymore, because I just don't have it in me.

My body is weaker. But I think some days I can be Wonder Woman. I do things that I never imagined I would be able to. I lift a lot. And while I feel as if lifting David has left me weaker over the years, the fact is that David is much older than he once was, as well as much larger. Lifting him will never be easy again. But I will continue to lift and care for him daily for as long as I absolutely can. And while my body is weaker, my will is stronger.

I don't exercise enough. I have little motivation lately. I was running/walking regularly and attending weekly group workouts a year ago. But I'm not now.

But I will. When I do find motivation, I have been walking. Or pushing out 20 pushups or 50 situps. It's a start. I just have to keep at it. Hopefully Kyle will inspire me a little more soon.

I don't cook healthy meals every night. Sometimes we eat pizza. Sometimes we eat candy. Sometimes we eat comfort food. Sometimes we scrounge around the refrigerator and it's every man for himself. I take pictures of yummy desserts when we're out and post them on social media to make others jealous.  ;)

Nope not always healthy. But not always unhealthy either. I'm finding a balance in cooking lately. We've had 2 very healthy meals recently and tonight is more of a fall comfort food we'll be trying. It's ok and I refuse to feel guilty about what my family may or may not eat. They are fed and we are all healthy.

I can't do this alone. Sometimes I'm lonely. This can be a very isolating world. Watching activities on social media is tough some days.

And I do not do this alone. Michael helps. My family helps. And my friends are wonderful. I have friends who check on me every single morning and that helps my loneliness be lifted. No one could do this alone. I have recently been asking for a little help. And finding that people are actually WILLING to help. I wish I had asked sooner. I wish I knew the kindness of people.

But now I do.

We're all weary at times. But we can all overcome and persevere.

Dreams

Today was David's annual IEP meeting as well as his 3 year eligibility meeting for special education. We've been through 15 IEP meetings for him as of today. There are many people involved in his care at school. It includes teachers, therapists, social workers, and other representatives from both districts (we live in one school district, but David goes to school in a neighboring district). It's a full house.

I don't get too nervous about these meetings anymore. David's needs are being met very well at school. They take very good care of him & I fully trust them to be with him all day, every day. When he's in a good mood, he's described as a "social butterfly". When he's cranky, he's described as "self-injurious" or "cranky-ass" (maybe that last one is only at home-but it would be an accurate measure of demeanor if they DID use that at school some days.) But all in all, I feel 100% confident about the care he receives while he's away from me. They love him. Plain & simple.

But he is going to be 18 soon. In 5 months. That complicates so much. He'll be able to attend high school until he's 21. But 18 is the magic age when he becomes an "adult". We have to go through the process of legal guardianship, trying to get him Medicare and/or Medicaid, finding new doctors to meet his needs since he won't be in the pediatric realm anymore. It's all so much.

I hate it. But I'd do it all over and over again for him. Because it means he's still here. David's life expectancy is "a couple of decades, possibly a little longer". According to several doctors. I know I've said it on here before. But that kind of stuff is HARD to hear at yearly appointments. Especially because we DID almost lose him 9 months ago. I thought I knew him well enough to detect when he's coming down with something. I have almost always been able to catch things before they become out of our control. There's usually some warning signs. But there was NO sign in January. He was fine when he went to bed, and septic and in kidney failure when I went to wake him up the next morning.

And I know I'm not ready. Someone once told me that I should prepare myself for what's probably inevitable. Because it's easier than being hit with tragedy suddenly. And while I totally understand that thought, I don't believe you can prepare. Either way sucks. Is thinking about something that's completely unknown healthier than being hit suddenly with something unexpected? Because I do think about it. Every. Single. Damn. Day. I have anxiety about it. I don't sleep. My mind is always "preparing" for the expected, but the unknown. I'm having anxiety about how my younger child might react to the inevitable when it happens--he got diagnosed with anxiety after the hospitalization in January. I worry about my husband's reaction. He holds it together, but he does it for mine & Kyle's sanity.

And it's so unfair.

But it's also our life. Unfair & messy. Anxious & nervous. Raw & real.
But having a David-filled life is also amazing. He equals love & hugs. Happiness & laughter. Hopes & dreams.

I don't know what our future holds. But I'm going to hold on tight. And when my "couple of decades, possibly a little longer" happens......I will do my best to fill my dreams with my memories. Because good & bad.....I'm making as many of them as I can.


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How I Failed at Parenting This Summer

This summer was tough on me. I mean TOUGH. Michael started working crazy hours back in May and it continued through August. Which means I took the kids with me to work WAY more than I thought I would have to.

Kyle is easy at work. Give him a phone and sometimes his favorite cousin and he could be entertained for hours.

David is not easy. At all. The first few times we were there on a regular basis, he was fine. He was happy to explore a new territory. I let him scoot around the office freely. Until he busted his head back open. Along with the huge gash knee. And the cuts and scrapes on his elbows and arms. As well as the terrible bruising along his spine. I knew he could no longer be free.

So we tried the wheelchair. He hated not being able to move. He cried a lot. He thrashed around a ton. So I brought his blue tumbleforms chair. It worked for a little while. But he eventually figured out how to dive face-first out of it onto the office floor in front of him.

He peed through every pair of shorts that I brought with me. Every time we were there. He refused to wear a shirt. Sometimes going shirtless would ease his frustration and anger, so we just went with that as a dress code for him while we were there.

Needless to say, it was hard for me to concentrate with him there. I have never been so grateful for school to start. I miss him. But I just can't be functional while David is at work with me.

I know we shouldn't grade ourselves compared to other parents. But I often do.

I had so many things I wanted to do with the kids this summer. But by the end of the day, I was exhausted. Michael was tired as well. But when he got home from work, several days a week I escaped to a friend's house for some me time. We self-tanned, shaved faces (ask me about the tinkle razors-seriously life changing), ate food that wasn't good for us, drank adult drinks, and just talked. I never knew how much I needed time for myself. But I did. And while I still feel badly for ditching my children as soon as dinner was over, I NEEDED to. And they survived.

Speaking of dinner........Let's chat about what my family ate for meals this summer. Occasionally for breakfast, we'd make scrambled eggs. But most of the time Kyle just ate cold pizza. Or 4 (yes-4) almonds. And I didn't care. For lunch----he ate junk. Seriously. Slim Jims and popsicles galore. And it was ok. For dinner. Goodness. I don't think I shopped with a complete dinner list and grocery list made all summer. Michael grilled out a lot. We foraged around in the refrigerator and freezer a lot for scraps of food that could possibly turn into a meal. Magically. Because I usually didn't have items to make a complete meal out of anything. David ate the most nutritiously here, getting his 6 cans of Ensure daily as well as all of his necessary medications. That is one thing that I did not falter with. But poor Michael and Kyle. We ate like crap. And we survived.

Those things that I wanted to do with the kids. They didn't happen. I was either too tired, or David was too fussy. Or I just didn't feel like loading David into and out of the van multiple times and pack a diaper bag and guess how many changes of clothes, or how many diapers we might need. Mentally, I just didn't want to do it. Kyle played way too many video games and watched numerous Minecraft and Try Not to Laugh videos on YouTube. And he survived.

I often felt like I was drowning this summer. I could barely keep up on laundry, bills, cleaning, or life. I felt like I failed immensely. I know I drank too much. More than I usually do in the summer. Give me all the fruity drinks in the world. Michael has taken up whiskey. LOL

But despite us being a hot mess ALL SUMMER LONG......those kids were never loved any less by myself or Michael. We made it. We still managed to take a vacation, Kyle managed to get to the pool, run his first 10K, jump on the trampoline, read some giant books, and play with old and new friends. I was looking  back on my phone at all the pictures I've taken. And my kids (mostly) had smiles on their faces and there were memories to be had by all.

So did I really fail at parenting? I think I might have quite possibly made it through with a passing grade (probably not more than a C though). We had our rough moments. But we had great ones as well.

Strength vs Will

"You are one of the strongest people I know."

I hear it a lot. I know others who hear it a lot.

I am not strong.

I am so weak.

At this time in my life, I can't even count how many times I have assumed the fetal position and cried for hours on end. Hundreds at least.

I can't tell you many times I have pasted a smile to my face and pretended that everything is ok. When ok is about the farthest thing away for me. Or us.

I can't tell you how many times I just want to sit on the couch and stare into space. And do nothing. Not even take care of my kids.

I live for days on end waiting for my oldest child to come out of a state of unawareness and show signs that he is among us again and aware of our love for him.

I often lose my patience when he cries non-stop for days. And I cannot fix it.

I can't tell you how often I have needed to step away from everything. Family, friends, work, life. Everything.


My strength is really weak. Emotionally I have had a really hard time for the last 7 months holding it all together. He was so so sick. You think you're prepared for something like that and the possibility that comes along with that. You will never be prepared. Not ever.


Physically-people see me as strong. I lift and carry this 70 pound child to and from the van multiple times a day. I've dropped him before. Twice actually. Trying to put him in the van. I cried both times. My back physically aches daily. I question how we will continue to do this.

While my strength is weak, my will is incredibly strong. I have a fire-driven will to move on.


I do cry. I cry so much. If you've seen me cry-----we must be close friends. Because I do try to hide that part of me.

I should not be ashamed that I cry when things are hard. Because I often find my tears are the fire to strengthen my will. My will that I will continue.

I do paste a smile on my face. I let people in on this blog. But rarely do you see that side of me in real life. Sometimes I'm embarrassed about the lack of control over my emotions. That fake smile gets me through a day of embarrassment. Because if I'm smiling, no one will ask me what's wrong.

I will try harder to stay real. Sometimes "fake it til you make it" is a necessary reality. But I am going to find the will to be honest with those who care about me.

My willingness to wait out so many days of David being locked away within himself or stop crying for days on end is so worth it. Because we get true happiness and a joyful soul from him. Sometimes he is almost on heightened awareness after being locked away for days. And we get amazing happiness from him.

ha

My strongest will comes from his strength. David is absolutely the strongest individual that I know.
He is physically strong. Freakishly strong. His strength and will have gotten him through multiple severe illnesses in his young life. He has figured out how to be mobile to the best of his capabilities despite the odds stacked against him in terms of muscle spasms and lack of body control.

He is the best possible David he can be when he feels the power to do so.

My life would be empty without his strength.

I am weak and he is strong. But he gives me my will. My purpose.