Take Another Breath Daddy

Take another breath Daddy! Because as long as you are still breathing, you are still here with me. Take another breath.

Take another breath Daddy. I need you here. You are always strong when I am weak. I’m not sure I can be strong if you are not here to shore me up and encourage me.

Take another breath. I need to be able to ask your advice. I still have so much to learn from you. No one else’s opinion will matter to me in the same way yours has. I need your wisdom. Take another breath Daddy.

Take another breath. I cannot do all the things you do for me. I rely on you! You help me with things that are small to you but huge to me. You fix my broken furniture and change my flat tires. You help me take my dog to the vet and kill snakes for me. You plow the snow from my driveway. You have always been ready to come to my rescue with a ladder, a mower, a chainsaw, or your tool belt.

Take another breath. I have taken you for granted in the past. What will I do without you here? When you are watching I try hard to make you proud. Will I try as hard without you here? I’m afraid. Take another breath.

Take another breath Daddy. I need to hear your stories. I haven’t memorized all of them yet, even the ones you tell often. I need to hear them all again. I want to hear more about your childhood and your time in the army. I want to hear more about your years of farming and the adventures you had as a mechanic. Lately, you’ve told me a few I’ve never heard before! You might have a few more you haven’t shared with me yet. I need to hear more! I want to remember them all.

Take another breath. You need to make me laugh. I love your silly rhymes, and poems, and songs! They’ve made me smile my whole life. How does one guy have that many witty lines memorized? You have one for every occasion. And yesterday, when you were told what a short time you have left, you did it again. You joked with me about a silly regret and made me giggle in the midst of my grief. Please. Take another breath. For me. Take another breath.

Take another breath. Talk to me. I need to hear your voice. What if I forget what you sound like? You’ve always been just a phone call away. Take another breath.

Take another breath Daddy. I have been watching you for these past few days as you struggle to get enough air. I need you to take another breath because I am not as brave as you are. You do not cry. You are not afraid. I cry. I am afraid. I need you here to be brave for me. Take another breath. I don’t know how to do this. I’ve never lost my daddy before. I need you to help me get through this. Take another breath. Please. Take another breath.

Note: At the end of March, 2016 my dad was diagnosed with lung cancer. We were told he had weeks to live. He has defied the odds. This update is July, 2017 and the end is very near for him.

Mom and Dad's hands, April 8, 2016

Sydney and my dad at a cattle sale

My college graduation, 1985 

If you liked this blog post, you might also like these two: Choosing My Nursing Home and Don't Blink 

Helping Tate Stay Afloat

Most days I am an encourager. I can play the part of Pollyanna as well as Haley Mills did in the old Disney movie. And I cannot be shaken. Go ahead world: throw things at me. Go ahead autism: hit me with your best shot. I will not be discouraged. I will not be swayed. If there are silver linings to be found I will uncover them.  

But the truth is: even when I am acting the part of Pollyanna I know that Pollyanna cannot make our reality better. She can only make us feel better about our reality.

There are occasional days when I cannot convince myself to play the part of Pollyanna because I have become disheartened. When that happens, I feel like I am just one big heavy sigh away from the edge of hopelessness. Days like that sneak up on me. They come at times when I am tired or when autism shows us something we have not seen before and have not prepared for. They come when autism has won the battle and kept us from teaching Tate one more skill he needs to succeed in this life. 

Those days I feel as if I am drifting in a dilapidated boat in an ocean of autism. My son Tate and I are adrift together, but his disability isolates me from him so it is as if we are each alone. 

Alone.

Together.

There are clouds above but I cannot find the silver linings. Drops of despair pummel me, filling the bottom of our boat with water. The unforgiving drops sting and leave marks as uncomfortable reminders. Tomorrow Pollyanna might minimize them for me but she’s nowhere to be found today.

The school year is coming to a close and it is time for meetings and evaluations and report cards, I hear the teachers say, “We enjoy your son so much! He’s doing well in school!” But then I look at the papers lying in front of me. In a nutshell, they say, “Your soon-to-be high school student is still working on second grade math and reads at a fourth grade level.” How can this be? Pollyanna! Make me feel better! Have you nothing to say this time? Well at least grab a bucket and help me bail! Our boat is sinking! Do you not feel it? HELP ME BAIL! 

Sometimes, on these days the ocean becomes so rough it leaves me seasick and deeply discouraged. I long for solid ground, the ground I used to stand on, before the overwhelming diagnosis of autism. The land of opportunity: where I used to picture Tate going to college, working, driving, and raising a family. It no longer seems like a land of opportunity, but like a land of impossibilities. 

I feel the waves of unforgiving truth trying to capsize our rickety boat. Pollyanna might say things like: “It could happen one day.” Or she might start listing famous people with autism who overcame the odds. She’s always the optimist. 

But deep down, even Pollyanna knows, no matter the age, Tate will probably never be able to problem solve on the level it takes to drive. He will never have the skills needed to fill out a job application or take a college course. He will not be developing the kind of maturity it would take for him to live independently. That’s the harsh reality, and no amount of cheerleading or feel-good sentiments will change that. 

Some days I have to face harsh ugly facts and a Pollyanna attitude cannot dilute the grim reality. 

The boat is still afloat but the waves are coming in over the sides as I frantically bail water. The rain still falls into the boat from above. I cannot let the boat sink! I can swim in these waters and perhaps reach the solid ground. But Tate cannot. 

He does not know yet. He does not understand that he will never truly grow up. His body will age but he will forever need the supervision and guidance he has always needed. 

I have to keep bailing and keep him afloat. 

I search for an umbrella or anything that can help me keep some of the water from falling into the boat. And I find something! It’s not big enough or strong enough to completely block out the rain and the waves. But it helps, just enough. And my resolve is strengthened. 

I have asked Tate’s siblings to make promises to me. And they do. Someday they will take turns keeping Tate safe, helping him to stay afloat. My hope is that the promises they have made me about the future are not unrealistic. I know the promises I have asked them to make are unfair. But autism does not play fair. Autism is unreasonable. Autism steals and cheats. Autism makes overwhelming demands and tries to sink our boat. 

I will continue to balance in this shaky boat as best I can on the hard days, keeping Tate safe until I’m too old to do it anymore. Pollyanna will be around on most days finding all the silver linings.

Smiling.

Encouraging.

Because Pollyanna can make us feel better about our reality, even though she cannot truly make our reality any better.

You might also like to read: The constant drip, Perseveration 

Coffee Tables Aren't Hot

When you hear the word “autism” where do your thoughts go? Does your mind start whirring through words or acronyms associated with an autism diagnosis? Do you think of: echolalia, stims, meltdowns, an IEP or SPD? Upon hearing the word “autism” a lot of us would picture a loved one and some of the stereotypic behaviors demonstrated by him or her. The word “autism” probably conjures up things in my mind that are not necessarily brought to your mind at all. I think of my son Tate and some of his unique quirks and stims. I think of his anxiety, his lack of social awareness and his literal way of thinking. In my mind, this is what autism looks like:

Social awareness and how to treat others is a daily theme. Tact is not easy to teach and when it has to be taught in each individual setting it becomes very challenging. I constantly remind myself that Tate is not intentionally rude. He genuinely does not understand what is socially acceptable and what is not in many situations. 

Then there's the literal way of thinking that is both endearing and at times maddening.

Tate keeps our home lively and interesting to say the least. A sense of humor is a must when teaching Tate. Laughter is a huge part of who we are. I've found the cartoons encourage and teach, as well as lighten the mood when autism tries to darken it. I hope you enjoy them as much as we do. Tate likes seeing himself as the star of the show in these illustrations. If you'd like to see more then visit our Facebook page Quirks and Chaos. 

Click here for another blog post showcasing Tate and his literal way of thinking: There is no ham in hamburgers

REASONS WOMEN CAN DRINK WITH A CLEAR CONSCIENCE

Because I applauded the CDC's bold recommendation last week I've heard some arguments from women about why the CDC's statement was ridiculous. If you have not heard already, the Center for Disease Control made a recommendation that sexually active women who are of child bearing age and not on birth control, abstain from alcohol. There was public outcry. Social media was abuzz and so few seemed to be standing with the CDC. And then there were so many blog posts making fun of the CDC and calling them condescending for their recommendation. The CDC's recommendation targeted women only. It did not include men. And after all that drama, because I am in support groups of parents who are raising children with Fetal Alcohol Syndrome (FAS), I got to see that I was not the only incredulous person online who could not believe that people would argue with the CDC's statement. You see, those of us who know what FAS looks like and see the kinds of lives our children are living cannot fathom anyone drinking while pregnant. My daughter's birth mother could have abstained from alcohol. But she did not. My daughter will pay the price for her whole life. 

Here are a representation of some of the best explanations I have seen this past week that definitely justify the use of alcohol by women of childbearing age who are not on birth control. 

Reasons sexually active women who are not on birth control should be able to drink with a clear conscience:

1. Because men do not have to abstain so it is discriminatory to tell women they should!

Mother Nature is such a chauvinist huh? She only gave wombs to women, not men. It’s about biology, and nothing else girls.

2. This one is really just like the first: If my boyfriend/husband/guy-I-picked-up-at-the-bar gets to drink then so do I!

You cannot find a sex partner who is willing to abstain while you stay sober too? Do you really want to have sex with that guy? If you do, then I got nothing else to say except, “Wow.”

3. Because women have to endure so much for their children (or future children), sobriety should not be added to the list of inconveniences.

I actually have to say it again, “Wow.” You know that baby you may or may not be trying to create? It’s going to do a lot of inconvenient things. And the alcohol you are drinking because you have the right? That alcohol is going to make all those things that kid does that might be inconvenient MUCH more inconvenient. A kid born to a mother who drank will need a whole lot more from her than a kid who is born to a mom who abstained. Kids with Fetal Alcohol Syndrome (FAS) are exhausting.

4. Because it is not right that, even though I may not even be pregnant or become pregnant, the things I want are still put second to a non-existent baby.

So you are on birth control then? Because if you are not then that non-existent baby is not necessarily non-existent anymore is it? Sex creates babies. Drinking alcohol while pregnant creates babies with FAS.

5. Because I know a kid whose mom drank while she was pregnant and he turned out just fine.

Right. It could happen. There are SOME babies born to drinking mothers who do not appear to have alcohol related disabilities. Fraternal twins can even be affected differently while being exposed to the same amount of alcohol in the womb. Do you really want to take a chance? And those babies who do not appear to be affected just might have been even smarter, even more talented, even more “normal” than they already are if only their mother had abstained completely. Look your kid in the eye a few years from now and let him know he might have been even smarter, even more talented than he is now, but you really wanted to have just a drink or two while he was developing.

6. Because some doctors still say a little alcohol is not harmful to an unborn child.

The best reason/excuse yet! You can find a few doctors and articles that will say moderate drinking is not harmful to a baby. You will find far more doctors and articles written that recommend a mother not drink at all. You really want to take a chance? With your kid?

7. Because not drinking is unrealistic. You would have to be a Quaker to avoid alcohol (or unplanned sex). 

Really? I am no Quaker. It really is possible to have fun without alcohol. It really is possible to put your unborn children (even the unplanned ones) ahead of alcohol. Really. 

I reserve the right to add to this list as I'm quite certain I am about to get a few more reasons from women that they should be able to drink with a clear conscience. 

We are not animals. We are people. We get to plan ahead and make complicated decisions about our future and the future of our children. And yes - even the future of our future children. Is alcohol really that important to you? Really?

I do not imagine I will change the opinion of one woman who is drinking and having sex. And I doubt this will boost my blog page. I will most likely lose a few followers. Why then do I feel compelled to write about such a controversial and hot topic? It is because I have to stand up for the things I believe in. If I lose a thousand followers over this post, so be it. I will not be debating the topic any longer. Last week when this topic was being argued on my Facebook Page, one of my readers came to my defense and asked another why she would come to the page of a mother who is raising a child with FAS to argue that alcohol and unprotected sex are not a big deal. It is such a big deal. 

Note: Before I get dozens of comments saying it is not so much WHAT the CDC said as the WAY they said it, I would only respond that it might have been said just a little more eloquently. Perhaps the issue of men and how alcohol damages sperm should have been addressed. But I still stand with the CDC on this one. 

Plastic and Stuffing and Love

Misfortune struck our home this morning. If you are fond of Sydney let me warn you: This is a sad story. You’ll need to grab a box of tissues and sit back. 

If you’ve followed our Facebook page long at all you will know who Riley is and probably even remember Liberty from stories long ago. But just in case you need the background: Sydney has had a doll since she was toddler. Her name is Liberty, named after one of Sydney’s friends from preschool. Liberty has been pulled for miles in wagons, ridden on the back of bikes, swung for hours on a tire swing, pushed in strollers up and down the driveway, and gone on many family road trips. She has been carried, dragged, hugged and loved a lot over the years. I have washed her, repaired her, Febreezed her, and detangled her hair many times. Liberty has become quite unsightly, a raggedy mess in fact. But looks do not matter to Sydney. Others recoil at Liberty’s appearance but Sydney still loves her. I had many times tried to get Sydney to transfer her affection to a newer or more attractive doll. Sydney has several nicer dolls but none meant nearly as much to her as Liberty…. until she met Riley. A year ago in March Sydney and I were shopping. Sydney had some money to spend. She usually spends her money on farm toys like tractors and plastic animals. But this day Sydney saw a 20” baby doll she just knew she could not live without. Riley was named before she was even removed from the packaging. It was love. And for the past ten months Riley and Sydney have been nearly inseparable. (Liberty is still loved too but she mostly hangs out at home these days.) The only place Sydney goes without Riley is to school but if it was allowed then Riley would be sitting right beside Sydney every day at a desk of her own there too. Riley has not just become a part of our family, our friends have grown fond of her. Riley almost never misses a worship service and Sydney often asks one of the ladies from our congregation to hold Riley and tend to her while Sydney goes to Bible class. The ladies have played along so often and talked with Sydney about her doll on so many occasions they notice if Riley is not in attendance. Sydney loves the attention the ladies give her through Riley and the ladies love to give Sydney that. 

Liberty, after years of being loved

Sydney with Riley out to dinner

A road trip with Sydney and Riley

Riley rarely misses a church service

Birthday gifts!

Now, for the real story: Got those tissues? Yesterday was Sydney’s birthday. After school Sydney and Riley jumped on the trampoline, swung for a while, and then took the stroller for a walk. Shawn got home from work and Sydney ran to greet him, leaving Riley unsupervised. A few minutes later, Sydney’s older sister drove in. Sydney’s excitement was intense. It was time to start our birthday celebration! And in all the excitement of our family birthday dinner, cake, candles, phone calls from siblings who live in other states, opening gifts, and putting together a couple of new little toys, Riley was forgotten. Even at bedtime she was not missed and Sydney had a sort of campout in her sister’s room. This morning Sydney could not find Riley. I helped her look. Her brothers helped her look. Sydney told me more than once, “This is making me nervous.” and I reassured her that Riley was fine, just under a blanket somewhere or behind something. We looked in the car. Twice. 

I asked Sydney if she could have left Riley outside, thinking back to the last time I remembered seeing Riley the afternoon before. And I started feeling slightly ill as I began to imagine the worst. I asked Shawn to go outside to look around the yard. I could hear Sydney upstairs calling Riley’s name, looking again. I looked out the front window as Shawn bent over to pick something up. He was way out at the edge of the yard and I could not quite see what he had. Then he bent over to pick something else up. And although I could not see clearly, I knew. I knew our two puppies had found Riley. I knew how badly Sydney was going to feel and I knew there was nothing I could do to shield her little heart from the hurt it was about to experience. As Shawn got closer to the house I could see he held pieces of the doll. There would be no washing, repairs or patching I could do. I frantically tried to think of something I could do or something I could say that would protect Sydney from the truth. And then Sydney came down the stairs telling me Riley had not yet been found. I stepped between Sydney and the window. Sydney looked at my face. I saw fear in her eyes. I told her there was bad news and Riley was not okay. And then my little girl, who almost never cries, even when in pain, began to sob and choke out, “But I love her” over and over. I picked Sydney up and went to the rocking chair where we bawled and rocked together for a long while. This fifty-two year old, rational, somewhat cynical, experienced mother cried like a baby. I kept telling myself I was being silly, crying over a ruined toy. But I was not really crying over a ruined toy. I was crying over my little girl’s anguish. I could not take it away from her. So I shared in it.

I know. I know. A doll is just plastic and stuffing and this is ridiculous, blown way out of proportion. But if you can think back to your childhood and the most prized possession you owned all those years ago, then you might get an inkling of how important Riley has been to Sydney. 

As the tears subsided this morning I asked Sydney if she would like to go shopping to try to find another doll. I remembered the store where we’d found Riley and knew it was likely we could find an exact match there. I knew I might also have luck online. It took a while for Sydney to warm up to the idea of a replacement. I suggested we could even pretend the second doll was the same doll and this day had never happened. Sydney did not think that would be possible. But as the day progressed I could see the pain lessen. 

We did go shopping. And we were able to find a doll that is an exact match. And although Sydney insisted we choose a different name (because this was NOT Riley) before our day was through we had all accidently referred to the new doll as “Riley,” several times, Sydney included. The new doll was named Kennedy initially but now we are told she is actually Kennedy Riley and will be going by Riley mostly.

I am reminded of the Disney movie Inside Out as I look back at the day we just had. Ironically the character in that movie was also named Riley. The movie’s message was: We cannot always protect the ones we love from sadness. Sadness is an important part of life and we all need to experience it to grow. Without sadness would we really even know what true happiness feels like?

Steve and Murphy

Tate sent out a text message today to spread the news about Riley. I thought nothing about our tragic morning was worthy of a smile until I read Tate’s words. And before you ask: No. There will not be a funeral, flowers, Cheetos, or Pretzels. 

This was not our first tragedy. We've had broken hearts before. Breaking Bad News