Sep17

In which I take a (very) long moment to explain about… me

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A while ago I was attempting to change the light bulbs in our 13 feet ceilings. Seriously, who ever decided it was a good idea to put light bulbs up that high, must never have had to change them. Lucky for me, these were the flood light kind of lights that didn’t have a cover. So, I was able to whip out my handy-dandy light bulb changing tool I got on sale at my local Lowes.

I had four to change. One by one I carefully removed the expired bulb and replaced it. I moved slowly and carefully because, even over carpet, a 13 foot would shatter the strongest of bulbs.

Finally, I made it to the last bulb; which happened to be over tile. Having done this a million times before, I was confident enough to know I could do it without making it fall – and yet careful enough to make sure of it.

Carefully, I suctioned the tool to the bulb and began, ever so slowly, moving the bulb away from the socket. About six inches from the socket, I realized I hadn’t suctioned the bulb well enough at all. Not even close. And before my mind could finish this thought…

It fell. Shattering in an infinite number of pieces; pieces that we would undoubtedly be finding in the rug or the skin of our bare feet for weeks to come.

It is always annoying when this happens – we have all experienced it. But for me it was one more defeat; one more reminder that I am not whole.

You see, I identified with that bulb on a very tangible level. Seeing how light bulbs are not real and carry no emotion at all, you might think it impossible. But, my friends, I was able to find a connection. At this point, you are thinking I must truly be insane. Well, I am not going to argue with you there, I truly might be. But hear my reasoning.

You see, I feel every day as though I balance a very careful, a very fragile existence. Living with chronic pain – which I choose to not medicate beyond Ibuprophen – has changed my life in ways that are beyond frustrating.

For years and years, I have lived with so much pain that the thought of rising from my seat to get a napkin overwhelms me. Bending over to pick up toys ended long ago when I realized it only made things worse. And laundry? Don’t even get me started… even with a special laundry set up that is supposed to make it easier, I still struggle. Day after day, I struggle just to do the basic things that other can do without thought – say, putting on a pair of pants.

Over a decade of this has played such mind tricks on my body that I don’t know if I am completely mentally ill and just making this up or if my aches and pains are legitimate. Years of multiple doctors telling me its depression has made it difficult to really believe that what I am feeling is real – and even harder to stand my ground. I know what depression is. But I also know what pain is. I got tired of people dismissing the pain because depression is the one they know how to fix – or because they felt these were psychosomatic symptoms.

I finally found a doctor who listened; who didn’t tell me it was depression. Instead, he tweaked some of my hormones and after a year of treatment, I have made HUGE improvements. I am able to do small things. Things that wouldn’t have taken me more than a couple hours before can take me over a week now. But at least I can do them. So there is a start.

I feel like that bulb. Teetering on the edge of a set back. Ready to shatter at the slightest sign of stress into a million shards at any moment.

I talk to myself, give myself words of encouragement. I tell myself that it is worth the risk of trying to get better. I tell myself that the more I don’t move around, the harder it will be to get better. I tell myself that I can do hard things.

And so I try. I keep trying.

I keep trying to improve my health. I try to go slowly. I try to be careful. I consult multiple health care professionals. I take every precaution possible. All in the hope of getting better, making my quality of life something more than a slug. And, so far…

I always crash.

I crash like the bulb. And all those millions of pain receptors ignite and flare and spread like millions of pieces of a glass light bulb. The shards burrow into places in my body that I will be finding weeks later. Three weeks of physical therapy can easily set me back for 3 months.

So, I slowly begin to pick up the pieces. One by one. Piecing my body back together in a manageable mass of discord. Hoping this set back is different than the last. Hoping I will be on my feet sooner.

Just so I can start the process all over again.

That part is frustrating. True. But it isn’t the worst part. No, the worst part is hearing your daughter explain that it would be okay to go to Disneyland because they have beds there. The worst part is explaining to your children that the house is too messy for them to have friends over. The worst part is watching your children mimic your behavior – behavior that isn’t really who you are but only a manifestation of your pain. The worst part is desperately wanting to apologize to every neighbor, friend or UPS driver about your messy house. The worst part is knowing the children need you to be more involved and realizing there is no more to give. The worst part is knowing that you are giving all you have and knowing that it just isn’t enough – not even close.

What it comes down to is this… It doesn’t really matter if what I am going through is purely physical or purely mental. Or a mixture. The only thing that matters is that I have to find a way to go from shattered glass to a functional person. I am even ok if I still have to have pain, as long as I can function.

Some time ago my husband and I watched “Everest” which follows people who attempt to climb that great mountain. One man, with metal rods, pins and caging around his spine and other places on his body, made the climb. Hiked through the pain. An asthmatic made it too. He said the desire to conquer Everest had very little to do with the mountain and everything to do with conquering his body.

I know that feeling. I want that. But no matter how much inspiration these men are to me, I still get conquered by my own body. I have yet to learn how to work through the pain and the fatigue and the ever-present brick wall that is cemented in my path.

Some day I know I will be that fully functional, fracture free light bulb. And I will shine. I will do all the things that I am meant to do. Until then, I just keep going. Picking up the pieces and trying again.

It isn’t always the easiest thing to do. But, it’s not impossible. If I can just remember that and not give up, I will succeed. But that is the hardest part… not giving up.

Feb7

The Answer

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A while back, I had an opportunity to sit in on some religious discussions that were being presented to my sister-in-law. Having grown up in the same religion, she had some very real concerns over some of the things we believe. We believe that we all lived in heaven before we were born to this earth. Once we arrived on earth, a veil of forgetfulness was placed over our minds so we couldn’t remember the previous life. It is our purpose in life to find God and find happiness. However, sometimes, due to our forgetfulness, we make mistakes and struggle. And most of the time, this life isn’t easy. But we believe that this course back to heaven, one in which we have to rediscover God and our purpose, is the one that will bring the most happiness.

My sister-in-law questioned why this was so. Why, if God truly loved us, didn’t he just tell us how things are and what things we should do? Why did it all have to be a mystery and why couldn’t we just have the path set before us? If we were to be truly happy, why didn’t God just allow us to be happy without having to work for it?

I didn’t have a good answer. I explained that this is the way we believe will bring the most happiness, but I couldn’t tell her why. I felt unsatisfied in my answer to her. I knew there was more to it, but I couldn’t articulate what I meant.

A few months later, after all memory of this conversation drained from my mind, I sat with my husband discussing our oldest son. He has struggled with the terrifying grip of depression. While he is a good kid with an honest heart, he seemed to be surrendering to the negative effects of depression. He began to defy household rules and resigned his life to his bed, where he would sleep for 16-18 hour a day. He wasn’t doing drugs. He wasn’t making severely bad choices. He was just giving in to this horrible disease and we would do anything to help him free himself from its grip. We would do anything to ensure his happiness.

In discussing his situation, my husband and came to the conclusion that in order for our son to be entirely happy, he would first have to heal.  And in order for him to completely heal, he would first have to have his heart completely broken.

There it was. The answer to my sister-in-law’s question.

I love my son so much. I want him to be happy. But I can not just give it to him. I can’t just tell him the things he needs to do to be happy; he needs to find it on his own. And though it pains me to see his heart broken, I know that in it breaking, he will have the opportunity to find happiness. On a very limited level, I came to understand our Father in Heaven.

He wants us to be truly and completely happy. He wants us to be at peace and to heal from any distress we may feel. However, if it is to happen, we must find and travel that path on our own. When we do, we will find God, we will find true joy.

It doesn’t make life any easier. But, for the first time, on a very small scale, I understand why we can’t just have the answers given to us. I understand why we can’t just have life be easy.

It is because it is the journey that enables happiness. And God loves us enough to allow us the journey.

Jan14

Because of how I raised him

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Some time ago I was listening to a woman describe her son. She spoke proudly of how he was such a kind boy and then said, “I know it is partly how I raised him, but he also just came that way.”

This woman continued talking but my mind fixed on the simple compliment this woman had just given herself. As if it was a normal thing to do. I began to wonder what it would be like if I could have that kind of confidence in my parenting. I also thought of how wonderful it would be if more mothers around the globe took a moment to pat themselves on the back. To reassure themselves they are teaching their children the right things.

I have thought of that comment frequently since that day. It wasn’t such an astounding thing to say – nothing that could be deemed important, really. But I have thought about that woman’s confidence in what she was doing. Her belief that she was a good mother.

Maybe I worry more than most women, but maybe not. It seems that many mothers I know are concerned they are not doing enough for the children. That is certainly my case. I worry that my gifted son’s depression and apathy towards life was cause because I didn’t allow him to explore his talents more. I didn’t let him awake his creativity. I worry that another child lies and steals to get attention that I am somehow withholding from him. I am concerned that the playful nature of another child is fading because I am too shy to meet parents myself. And the list goes on.

I see my failures and I see where I lack. I know it affects my children and yet, I still can’t seem to change the things that might affect them. I don’t often see the good that I do.

Still, through all that, I find myself attempting to reassure my heart that I am doing the best I can. That my children love me in spite of my weaknesses. It’s a careful line to balance, somewhere between doing my best and failing. I often feel as if I will just teeter right off the tightrope itself.

So, when an outside observer offers a painful, troubling reprimand, it stings. It stings a lot.

It is difficult not to take it personally. Near impossible not to react. I find myself re-evaluating my parenting. Wondering if that person was right in their assessment of me. Scrutinizing everything I have done over the multiple years of raising children. Trying to resolve in my mind the desire to be a good mom with the facts that are before me.

In the end, I decide that we are all just trying to do the best we can. One person’s capacity might not be the same as their neighbors. But it doesn’t mean they are a bad parent or doing a poor job. I have also decided that no parent who is making an effort should ever hear that they are not enough – not if they are trying so desperately to become enough.

In my opinion, us moms need to give ourselves a little credit, like the woman I spoke of earlier. We also need to give the person next to us a little credit. We are all just trying to do our best.

And who knows, if we remember this, we might just find ourselves simply stating to someone, with pride, “It’s because of how I raised him.”

Oct10

Super Scrumptious Butterlicious Choco Chippers

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The BEST chocolate chip cookies you will ever have.

Preheat oven to 375 degrees (350 if using convection)

Supah Scrumptious Butterlicious Choco Chippers

Super Scrumptious Butterlicious Choco Chippers

2 2/3 c. Unsalted Butter (soft but NOT melted)

2 c. Brown sugar (packed)
4 eggs
4 tsp. Vanilla

6 c. Flour
2 tsp. Baking soda
2 tsp. Salt
2 c. Chopped nuts (optional)
2 (12 oz.) package chocolate chips – I really just eyeball it. (semi-sweet or dark is awesome)

Mix all the wet ingredients in one bowl and all the dry ingredients in
a larger bowl (except nuts & chips) Slowly mix in the dry ingredients
into the wet. Mix it up until batter is smooth and thick (I use the cookie paddles for my bread mixer because it seems to fluff up the batter some.) once everything is mixed well, add the chips (and nuts, if using them)

Now comes the part everyone hates. You have to CHILL the cookie dough. I know you just want to eat these things immediately, but you can’t you have to wait. There is so much butter in these babies that if you cook without chilling, your cookies will be flat. Flat is bad. Thick is good.

Scoop onto room temperature cookie sheet. If you don’t want to reduce the mess, and I never want a mess, line your pans with foil. I use a 3 in cookie scooper to get a perfect shape every time.
Place in PREHEATED oven (if it’s not preheated, you may as well give up on the perfect shape).

3″ cookies will take 10-12 min. 1″ cookies will take 8-10 minutes. You might have to play with the temp and time some as it seems to vary oven. I cook them for 12 minutes in my convection oven and get perfectly cooked cookies everytime.

This recipe makes 48 3” inch cookie – plus a little left over cookie dough for those little fingers that keep dipping into the batter. I’ll never really know how many it makes because we always pick at the dough…

When you make these cookies, you are not doing it lose weight. These cookies every bit of goodness that should be in a cookie. So just enjoy.

 

Oct8

Different Special Needs

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When I was a teenager, I had a friend (let’s call her Candice) with Cerebral Palsy. Candice’s speech slurred and she walked with an awkward gate. Aside from that, she was just like me. She liked to fix her hair pretty, she thought the same celebrities were cute as I did and she was in some of my classes at school. Even though we shared more similarities than differences, she was still marked. Labeled.

Special Needs.

What exactly qualifies someone as a “special needs” child? Do they need to walk different from others? Do they need to have facial characteristics to set them apart? Does every “Special Need” need to be seen by other’s around them?

I knew a few things about Candice; what she liked to eat or which class she hated most. But, what I never knew was how many doctors visits she had throughout the year or how many medicines she had to take. I never knew the extent of her struggles.

I am the mother of fine looking children. Their digits are all accounted for and their bright eyes are positioned just right on their face. Their bodies are proportionate to their heads, they can all walk, run, see, hear and communicate.

From the exterior, my children are perfect. They are expected to keep up with their peers, adjust quickly to adverse conditions, never miss more than 10 days of school, and otherwise fit into the mold that is cast for “non-special” needs children.

However, what the world can’t see; is that each one of my children have “special needs.”

Between all five of them, they battle debilitating depression and disabling anxiety , ADHD, generalized mood disorder, hypothyroidism, migraines, asthma/allergies, motor & sensory developmental delays, panic attacks (resulting from the anxiety) that mimic Post Traumatic Stress Disorder, bed wetting, obesity & low-weight gain (two different children who eat the same thing), chronic sinusitis, re-occuring yeast infections, severe acne and skin rashes.

Our list of doctors include, not including our family practice doctor, pediatrician, endocrinologist, dermatologist, immunologist/allergist, otolaryngologist, neurologist, psychiatrist, opthamologist, orthodontist and probably a few I can’t remember.

We average 1-2 doctors visits a week  – all year long — and visit the pharmacy so much, they know our whole family. It takes over a half hour to refill “pill minders” for the week. (And I am not even including what mom and dad have to take or who we have to see)

If one child misses a dose of something, it could result in a disastrous day. Just one ounce of discord can quickly morph into a bucketful of chaos.

I have friends who have sweet “special need” children that they struggle to raise. They give all they have to help that child grow and function as normal as possible. Often, I watch with awe as I realize, I couldn’t manage the way they do. I am overwhelmed by the thought of what they must have to do just to help their child exist.

I often wonder, however,  if it is possible that the term “special needs” could be more broadly applied? Does a child with 3 or 4 different doctors (all needing regular followups) deserve that label. And, if they did earn that label, would it help?

Would my child receive more help and understanding if they carried an Individualized Education Plan (IEP) in their permanent school records? Would this tired, exhausted mom receive any respite support? Would my children be helped or harmed with this label?

These questions run through my mind, constantly, as I look at my children. Each one so special and wonderful in their own way. I can’t help remembering, and sometimes mourning, the child they were before their individual challenges bore their ugly head.

Parenting is definitely different than I had counted on and, sometimes, I just need a little recognition that, I too, am a parent of special needs children, because it is downright hard. I know I am blessed enough to have such sweet children and extra lucky that each child still wants to hug me. I realize, deep down, that it doesn’t matter if the world knows of their problems.

What it really comes down to is this: God gave me these sweet children and because I know that, I know He will bless me with the ability to care for them. Regardless of their challenges.

Oct5

Cracking the Crystal Bubble

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I grew up in a beautiful, jewel-lined, crystal bubble. A bubble I was sure would never burst, for it was as strong as the love my parents gave me. I loved my bubble and embraced the bliss that comes from being bubble-bound. I knew I was nothing short of a princess.

Even though my pink princess dress and tarnished tiara sat in the bottom of the costume box most the year, I often felt as much a princess as the days I pulled on the dress to twirl and spin in the clouds.

I was a good little princess, growing up in my crystal orb. When I became an adult, I married my prince charming and (this part they leave out of fairytales) made crazy love, until we filled the corners of our home with little princes and princesses of our own.

In my world, God was good. My Prince Charming was kind. And my little ones brought me more joy than pain – usually. But, in spite of all of that, it still happened.

My un-crackable, beautiful, jewel-lined, crystal bubble actually cracked.

I can’t pinpoint the exact crack; the date or the time. I guess it just happened, slowly, over time. God is still good. Prince Charming is still kind. My children still, on most days, bring me joy – well, at least a smile. But I am learning things; discovering things.

As I carefully remove my glass slipper and set my tender toes on the new territory outside my crystal bubble, I find a whole new awareness of the real world; of life – as everyone else knows it. I find pain and sorrow. I find humor. I find tragedy. I find interesting societal occurrences. And probably most surprising to me, I find myself. And even though it might be painful — in more ways than one — I find ALL of myself.

I have finally figured out I am not a real princess; or even particularly important for that matter. I am a mid-life, suburban mom. I am active in my Christian religion and volunteer at the school. I drive a minivan and secretly watch episodes of “Phineas & Ferb” without the kids. I won’t answer the phone when I don’t recognize the number and I can never say no to a child selling cookies for a school fundraiser. I have good and bad days, sometimes more bad. I try to vote and keep my vegetables from spoiling in the produce drawer. I drive carpool, eat too many sweets and definitely need to loose a few. I love to fool around with my husband and cuddle with my children – obviously at different times. I am just an ordinary, everyday American girl – probably with too much attitude.

I’m Dani

And here is the kicker… I am probably your next-door neighbor.