Florida goodbye. Mom’s birthday.

My mom’s birthday is today. I think about her a lot. Her birthday is kind of sad for me, though I don’t know why. And the anniversary of her death this year kind of hit me hard.

I wanted to write a post about how much I missed her and how much she meant to me. But I just can’t seem to make it come out. It’s kind of stuck in me – or maybe I just feel like I have to hold on to it.

I wrote this after our trip to scatter her ashes last year and I think it’s time to publish it.

I miss you Mom. In more ways than I can say. And I think about you so much. We love you.

 summer also

Written June 2013 after our trip to Florida:

We just got back from an amazing vacation. It was truly the most amazing vacation I can imagine. My whole family (dad, brothers, their families, my family) all went to Florida together. We also met up with my Uncle Craig and his family there for part of it. I don’t want to forget this experience and so I want to write it down. I feel like there are three parts to our story, and so I will break it into three parts.

The first part is actually the last part in a timeline, but it is the part I want to remember the most, so I am starting with that.

My mom was born and grew up in Florida.She loved the beaches and ocean. I think she always missed it. When we went back there with her twice it felt like she truly felt at home there on the beach. In her video saying goodbye to us she told us that she had had a tough childhood, but that she always had the beach. She could go to the beach and feel at home and at peace.

When she died last summer she left instructions for us to return her to the beach. She wanted to rest on the seashore. We had her cremated and waited for a time that we could all get together. We said goodbye to her almost a year ago, but we didn’t ever finish the farewell until now. Her instructions to my dad were to take some money she had set aside from cashing out some of her retirement accounts and take all of her kids (she had so many more kids than she gave birth to – all of our spouses, all of our children…) on a lovely vacation to a beach somewhere. Anywhere as long as it was a beach. She wanted us to spend good time together and she wanted us to say leave her to rest on the seashore.

And so we did.

We had waited until our second to the last night to head down to a beautiful part of the beach. We stayed in a lovely beach house in Pensacola Beach, Florida. One night we all got dressed up a little and went to a beautiful and special place on the beach.

I have to hand it to my Uncle Craig. I hadn’t ever heard Mom talk about Pensacola Beach. I had heard about Fort Walton and Daytona and Cocoa beach. She talked about living in all of those places and we visited them when we went as kids and young adults. But I hadn’t heard of Pensacola from her. I was a little wary of the location because of that. It was lovely and all, but I just wasn’t sure.

My uncle showed us the beaches that are part of the “Gulf Islands National Seashore” – and it was so beautiful. Gorgeous sand dunes which my mother loved. Gorgeous shore. Green blue water that was so clear looking. Just so beautiful it took our breath away. My Dad wanted to have the actual “service” at sundown, so we got there a few minutes early and my uncle generously took some family pictures for us. We will always be thankful to him for so beautifully capturing the night.

When it was about sundown, we all stood with our backs to the ocean and my brother said a prayer. Then my dad opened the lovely wooden urn my mom’s remains had been waiting in for the last 11 months. My son stepped forward to say he wanted to help and dad asked if we all wanted to scatter some. We all took turns (kids first) taking a handful of ash and sprinkling it up the sand. My uncle spread his hand full in the water. So she is resting in the places she loves the most – the sand and ocean. I am sure that the ashes will dispense all over the area. She would have loved it there.

Then we walked up and down the beach a bit, the kids and some of the dads got wet. We had a few tears and a few group hugs. It was really a lovely way to say a final goodbye. The most lovely place I can think of and so many of the people my mom loved the most being there for her.

There are a few moments that stuck out to me that I want to just share.

-My nephew as we were pulling into the parking area changing the words of a song to “i miss my grammie so much”.

-My son being so serious and somber and wanting to help sprinkle the ashes.

-All of the kids – spouses included – being touched by our love for her there on the shore.

-The thought that this was a perfect place for her to rest. She would have loved it there.

-The ashes blowing up into my Dad’s face and camera and my dad saying that he thought it was her teasing him one last time.

-A lovely sunset.

-Very little sadness – mostly just great memories.

-My son “saying the amens” that he won’t forget the lovely times he had with his Grammie.

-The color of the ocean – such a lovely green blue.

-The boys and girls making drawings in the sand for grammie. My son in particular made a drawing right in front of the urn while we were getting prepared – with a heart and the word love and a crack down the heart “because it’s heart breaking”, and then after the scattering he drew a sort of headstone. It had the word Grammie, then a bone below it to tell people that her bones were here.

-Seeing a sort of closure in faces.

-Love

I don’t know why we as people need the closure after our loved ones die. I don’t think we are alone – there are several types of animals that care for their dead or stand over them touching them. All cultures seem to have different traditions. Ours tends to say goodbye and then move on, not looking back. I am glad we had this chance to look back, to have one last goodbye. My husband’s culture gets together 7 days after the death, 40 days after, a year after, and even every year on the date of the death in some families. I always thought that was kind of over-doing it. I said “just let them rest in peace.” But now I think I understand. It gives the family and friends time to be with those who remember their loved one. It gives them a way to honor them and share their memory. They don’t just move past the pain and let go. They hold on to the memories and the love and laughter. I have decided it is lovely. Maybe next year I will start a tradition of us toasting her or talking on the anniversary or her birthday.

I have decided that my family was lucky to have this and to have each other there for support too.

This year has been hard for me. I haven’t dealt with everything as well as I would have liked. Maybe this will give me just the push more – to remember the light more than the sadness.

*It did help me remember the light more than the sadness. And it helped me move forward some. So thanks, Dad, for making that happen.

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The kids burying each other in sand at the Florida beach house we stayed at.

Suicide – my thoughts in the wake of a celebrity’s death

Yesterday I read some jerkwad’s *coughmattwalshcough* opinion on suicide after the media frenzy of Robin William’s death. (I started this post last week, but haven’t had the strength to finish it until today.)

To say I felt he completely missed the nail is putting it lightly. He wasn’t even hammering in the same room as that nail.

I feel like I have something to offer on this subject and I want to share it. Normally I don’t want to share the deepest darkest parts of me, but I have been rolling the whole subject over and over in my mind since the news broke and I just can’t stay quiet. I have been appalled by some of the things I have read concerning suicide and his suicide in particular.

I have been depressed before – clinically and situationally depressed. I have been depressed to the point that I have lost jobs, only left my apartment to get some soda and cigarettes, stopped talking to friends and family, and self medicated – heavily. In those times I have often thought that perhaps the world would be better without me. I have thought that I was no good and nothing good could come from me and I would never ever get better. I have toyed with the idea of killing myself. I still struggle sometimes with depression.

But twice, twice I was truly suicidal. Twice it was only because something interrupted me that I am still alive today. Twice I had a plan and a time and day and I was ready to go through with it. That’s the difference between being depressed and having suicidal thoughts and being truly suicidal. The plan, the preparation, the time and place and day. That is what it means to be really suicidal. One of those times I was hospitalized for about a week. Obviously I am happy I was interrupted and happy I had the chance to get past those times in my life, as hard as it was.

Matt Walsh (I won’t link to his article because I don’t want to increase his traffic, but all you have to do is google “Matt Walsh blogger” and you will find him and his article) states:

“I can’t comprehend it. The complete, total, absolute rejection of life. The final refusal to see the worth in anything, or the beauty, or the reason, or the point, or the hope. The willingness to saddle your family with the pain and misery and anger that will now plague them for the rest of their lives.”
From this one comment I can see he has never been suicidal in his life. He has no idea what it’s like. Being that depressed and that suicidal is not a refusal to find beauty. It’s not a turning of the head away from anything good. It’s a feeling that there will never be anything good again for you. Not that you can’t see what you once did, but that you can no longer enjoy it. Not that there will never be happy times again, but that you can’t find a way to get to that point. You can’t find a bridge to take you from the worst emotional pain you can imagine to a place where you are happy again at least most of the time. And the family part – yes, most of us think of our family. We try to make it easier on them. We hang on as long as we do because of their love. We don’t want to hurt them, but our pain is so great that we can’t hold on any longer, not even for them. Depression lies. Sometimes it tells you your family would be better off without you anyway. It lies and it’s lies are mean.
Mr Walsh also indicates that happiness is a choice. That people who are depressed need to chose to be happy. While there ARE things that help many depressed people (therapy, medication, exercise, eating well, meditation, socializing, being outdoors, getting sunshine) there is no one choice you make to become depressed or *ping* undepressed. It’s not a conscious choice. I dare anyone out there to choose to change their body chemicals. Why isn’t he calling on diabetics to change their blood sugar and for thyroid patients to make their thyroid start functioning more correctly? It’s a chemical imbalance tied together with a whole lot of situational stuff that has kicked you until you are down. And kept kicking you. And most people don’t ask for help until they are truly down
There is another component in this particular case, though. Robin William’s wife issued a statement that he was in the early stages of Parkinson’s Disease. A horrible disease that takes away the control of your body. It attacks the nerves. People can live for decades slowly watching their body betray them more and more. When people learned this fact, the whole tone of the suicide changed. Suddenly the angry and mean comments were no longer being said.
I also know something about this side of the issue. My mother was diagnosed with early onset Alzheimer’s. A little more than 3 years later she killed herself. She told us from the start to expect that. She had seen other people decline with this same disease and she wasn’t going to allow herself to get past a certain point. She didn’t want to lose all she was and had been. But she was also depressed. From the moment she realized what was happening (in my opinion) it depressed her. While Alzheimer’s does that to many people – the chemicals in the brain being completely different can cause chemical depression – I feel it was also situational. She couldn’t stand her mind not working the way it used to and she didn’t want us to see her in a different light. She couldn’t take the land slide of changes in her life due to this disease.
She attempted once and then she succeeded a few months later. Everyone in my family has a different opinion on it. Some just feel like she died from Alzheimer’s – that the suicide wasn’t really her choice, that it was the disease that forced her hand so to speak. Some feel like she purposely planned it to happen just as she was really losing herself so that none of us would see her at the worst part of it. I fell like it was an act of love and kindness as well as the act of a diseased mind. She loved us too much to “become a burden” (though none of us saw her that way) and she wanted to spare us from taking care of her in that state. I also don’t believe she would have killed herself if she hadn’t been physically ill.
The interesting thing to me is that while many people see it as tragic, I haven’t met anyone who sees her death as wrong or selfish or hurtful like they do with a younger or physically healthier person who takes their own life. They understand it. They empathize with it.
Why is that empathy removed from so many people’s reactions when the reason is “just depression”? Why can’t people understand that depression is just as painful as other diseases?
I suppose my answer lies in the fact that people who can’t understand suicide have simply never been in the type of pain that severe depression brings.
When I was in high school a teacher of mine asked the class to raise our hands if we had been in physical pain before. Then he asked us to raise our hands if we had been in emotional pain before. Then he asked us which one we would choose if given the choice. Of the three people who had raised their hands for both, all of us said we would choose physical pain. Being 20+ years older now, I have had severe physical pain due to cancer and surgeries. Very severe pain. And I have experienced more emotional\psychological pain since then as well. I would still chose physical pain over psychological any day.
(I won’t even start with how the physical pain and psychological pain feed off each other.)
I suppose I am writing this post is to implore you. To ask you to please try to see suicide for what it is. To stop calling it selfish and hurtful and weak. To ask you to realize that it takes a lot of pain for someone to get to that point in their lives and that you may never realize just how much it takes, but that perhaps you can try to remember that your experience and someone else’s are completely different. I can’t truly know your pain and you can’t truly know mine. But we can BOTH be kind. We can both stop pointing fingers and saying that this or that is wrong for the other person. I think that the post I read made me so upset because instead of finding compassion and hoping to reach readers who need help and give them just a little, this person instead chose to blame and tell others that their pain isn’t real – it doesn’t count. That they can just suck it up, pull on the old bootstraps and fix themselves.
Please, instead, find it in your heart to open your arms and help others who are in pain. Listen for the people who need help. Show them compassion and love. And know that even if, in the end, they choose to leave you, like my mother did, that the compassion and love was not wasted. The kindnesses I showed her were not in vain. She felt them and they helped her at that time. Please know that the good doesn’t take away the bad and the bad doesn’t invalidate the good.*

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.” Henri Nouwen

Be the one who chooses to give love and share pain rather than telling other people what they need in these situations or that they are wrong.

*paraphrased based on a quote in Dr. Who

Come and Get It! *insert farm-style dinner triangle sound*

Mealtime.

The word mealtime makes me sick to my stomach. The thought of making food makes me anxious. Feeding my child makes me feel frustrated and alone. It makes me want to avoid real food of my own. It makes me want to curl up in a corner by myself with some artificially-flavored processed food in a bag and eat with no one around. No utensils or pans or pots or strainers. No knives and cutting boards. No dinner time banter. Just easy, non threatening food. Just the type of food that keeps you alive but doesn’t satisfy.

No, I don’t have an eating disorder. I have a son who has real and serious food problems. Those of you who know me know that my son has sensory processing integration issues. He also has geographic tongue. He also has tongue thrust. He also now has tons of anxiety about food and an aversion to putting things in his mouth. He mentally blocks out the rest of the food at the table and barely acknowledges his. I have written about food therapy before. We have done a lot in the past and we continue to do therapy for it. “We are working on it.” is our motto.

 

But today I want to share a little about what all of this feels like to ME. (if you want to skip the in depth details because you already know how frustrating it is – scroll down a few paragraphs to where I say “breathe.”)

 

I have been dealing with this since before he was about age 3. Actually, I have been dealing with it all of his life – he had a hard time suckling at first – we had to supplement, he was picky about his bottle nipples and couldn’t ingest enough to ever go up from a new born sized flow. His first 3 formulas (after I had to quit nursing for cancer treatments) made him sick. He did ok with pureed baby foods, but when we got to the chunkier textures or mashed up foods he resisted. Once we got him to accept those, moving on to table foods was like climbing Mount Everest. But we did it, and he ate almost anything I gave him for probably 6 mos to 1 yr. And then it started. He began eliminating foods from his diet. He began eliminating textures from his diet. It became so exhausting that I gave up and fed him what he would eat. It took a long time to get his doctor to send us to feeding therapy. It cost a lot of money to just get him sitting at the table with other smells of foods. Fast forward to 7 yrs old and it is still exhausting. I have learned to deal with it at home. I have figured out foods I can send to school. If he goes to a friend’s house, I send snacks. We work on therapy every day. There is one major thing that still makes the problems he has really difficult. Traveling.

Traveling with a child who won’t eat is challenging. Generally when we travel I have to plan as much or more for his eating as I do for anything else. We recently took a lovely trip to Yellowstone National Park. Half of the back seat and alongside the middle seat in our van was full of food for my son. Non perishables in bags and perishables in a cooler. It is far easier to bring most of what we need along because I can’t always find what he will eat in another area. For example, my son will eat blueberry muffins for breakfast. That is the easiest and most portable breakfast he eats. But he will only eat one kind. One brand. One version of blueberry muffins. One version of cheese sticks. One version of spaghetti sauce. The only thing we can order in a restaurant is French Fries (some places with chicken nuggets) or Spaghetti. Not Penne with marinara, not Bow Tie Pasta, not Mac and Cheese. Spaghetti. With no meat marinara. And I just have to hope he will accept the flavor of the sauce or that I can get enough of it in him and supplement with snacks.

Generally when we travel I try to have a home base. That makes it much easier to feed him. This trip happened to be near my family and we were going to be staying with them for all but the last 2 days of the trip. I was able to make him spaghetti at the first house and I was able to put it in his thermos and take it for our long day excursions. He ate a good breakfast, had a lunch to go, and along with other snacks and some fruit, we did ok. Then we arrived at the second house we would be staying at. I still had lunch for the next day, but after that it got a little dicey. I guess I didn’t convey what I needed well, because they didn’t have any spaghetti to make. They had linguini. But he won’t eat that. That day was difficult. I was very worried the whole day about feeding him. He doesn’t eat super nutritious on our trips, but as long and he maintains calories and isn’t fussy and crying all day, I am ok with that. I knew from our last trip to Yellowstone that they didn’t have anything for him to eat at most places. Chips and ice cream was all he ate last year. It didn’t work out well. So, from now on, instead of just taking the spaghetti sauce, I will make sure I have spaghetti as well. We stayed in a cabin the last few nights and that was worse. I had to keep getting new ice to keep some of his food cold in a cooler, there was no microwave or toaster, all he really ate was snacks – no actual meals. It was so frustrating. Generally I only stay in hotels that have a mini fridge and a microwave, but that wasn’t an option. Protip: there is no McDonalds in YNP.

The stress of feeding my son on a trip can be as exhausting as the actual trip. We did have a nice time and despite the food challenges we made it through mostly happy and very glad we went.

Two weeks later here I am trying to figure out how to feed him for 3 days at our family reunion at a ranch in the mountains. They are serving plenty of kid friendly foods – sandwiches, pancakes, sloppy joes, hotdogs, and my son eats none of them. I am making myself sick with worry. What can I take that I can keep in my room? What can I take that I can store in the fridge and how do I make sure I have enough in case some of the other 40+ kids see it and want some? How do I prepare food for him? What will be available? Is there a toaster or microwave? I will have to feed him before the rest of us or rush around trying to get his food and my own before the actual food is gone. I almost don’t want to go between that and the way the timing overlaps his school starting. Can you see where he gets the anxiety piece from?

 

OK. Breathe. Just typing this makes my skin crawl.

 

Let me try to put into words why this all makes me so frustrated and upset. There are a lot of reasons, but I will try to express them.

1. What is the main job of any mother? Break it down. After you strip away all the stuff. All the activities and play dates and homework and school supplies and exercise and OT and dental exams and “say please and thank you” and EVERYTHING, what is left? The main job of any mother is to feed and shelter her children. To feed her children so they grow to be strong and healthy and to shelter her children from the elements and harm. That is the job of mothers. If you can not feed your child, it makes you feel like a failure at the deepest level. It makes you feel like an unfit mom. So, you can’t afford swim lessons. You can’t buy the shirt they want. You can’t fit any thing more into your already too busy schedule. You can’t get off work to see the school play. You can’t take them to the park this time. You can’t tuck them in bed and tell them how loved they are tonight. Strip all that away. You are feeding and sheltering your child and that is what really truly matters.

Now try to consider how it feels to fail in that department. Some of you may be able to. I know some of my in laws can. They were in war torn Georgia when my husband was little and they DID know what hungry was. People who have been homeless or lived in shelters before may know what it feels like. I don’t know what it feels like to not be able to PROVIDE some kind of food for my child. (thank everything that is out there that I just happen to have all we NEED) But I know how it feels to have nothing he can eat without throwing up and to have his anxiety so high he is in tears and to have him telling me that he is hungry. It feels like failure. It tastes and smells and looks and feels like failure.

2. Other people just don’t get it. There are other people I know who understand some of what this challenge is like. Other sensory processing moms, other food therapy group moms, the therapists we have worked with and the staff that supports them. But most of the people I come across, including doctors and some of my family and in-laws, they just don’t understand. They think if I just did this or I just did that or I just tried harder or I just let him go hungry – they think it is my fault. And if they don’t think it’s my fault, they do think it’s a little ridiculous. The looks and comments I get, the zero sympathy, the cold shoulders, the “we do have food in our house” comments – it’s too much sometimes. It’s enough to make me isolate and avoid those situations. Even really well meaning people make it more stressful for me. We are contemplating going to Russia next summer. The last trip we made was horrible as far as food went. He wouldn’t eat. The baby food tasted different, the soups and foods were all different. He ate fruit and drank juice for a month. My MIL force fed him a few times behind my back and just the thought of that makes me irate. I am afraid to go to Russia next year. Even if I get him eating hot dogs, their hot dogs taste and feel and smell differently. Even if I get him eating sandwiches, their bread and meat and cheese and jam is all different. I suppose what we will have to do is get him eating one solid meal his grandma makes – soup or pizza or something – and that’s what he will eat. Except even that – even one food – seems nearly insurmountable. And the thought of the relatives (who ask all the time on the phone or Skype about it – and who truly mean well and want to help – but who just stress me out) makes me want to hide in the closet.

Try not feeling like a failure when most people you know are telling you that you are. Try moving past that to help your child. It’s difficult at best.

3. It is difficult and expensive. Trying new foods for weeks on end, just to have most of it thrown away – that is frustrating and wasteful. But I can only eat so many hot dogs or chips or cheese sticks or whatever. I am trying to nourish my body too, and I’d rather throw some of it away than keep stuffing my face with junk. Why do we try mostly junk? We don’t – we try new fruits and veggies and dairy products too. But the other stuff – I just have to throw a lot of it away. I can’t buy generic brand anything. He likes blueberry Eggo waffles. He likes Kraft 2% string cheese. He likes Honey Maid graham crackers. He knows if it’s a different brand. He does not have to see the package to know that this waffle doesn’t taste “right”. To most of us, generic brand tastes a little different. To him it’s a huge difference. One of the ways we try to give him variety is to try different “forms” of a food he already knows. So applesauce – we tried the squeeze packs all the kids are taking to school. He couldn’t do it. He couldn’t eat it. Same brand, same flavor, different package. That was too much. The amount of work we do on eating and feeding is insane. I can’t even go into the cost of therapy. It makes me want to cry. The extra work I do to make him foods he will accept and include them into our meals is very time consuming. The encouraging him to help me in the kitchen and having to supervise and sometimes redo what he has done is exhausting. But I know it’s all good for him, so I do my best.

4. It’s emotionally draining. For all of the above reasons – it’s draining and it’s lonely. Trying to hide my emotions about it is exhausting. Our therapists have told us that we need to keep the emotion out of it, because he has enough of his own. So when he gags or throws up, I am not supposed to run comfort him. I am supposed to tell him he’s ok and encourage him to keep going. That one isn’t hard for me, because after a few gags you get used to it. When he gets anxious, that’s a little harder for me. I understand he can’t help it, but I just wish it wasn’t “how things are for us.” I wish sitting down at the table could be enjoyable. I wish going to a restaurant where they throw food in the air and your dad catches it in his mouth could be an adventure. I wish watching someone make sushi and trying it could be exciting. I wish I could just feed him healthy foods and have him eat when we go somewhere else. I wish it so much that sometimes I get more frustrated than I should and I show it. On this last trip there were several times when I was able to keep my calm and help him work through the anxiety. But there was one meal that I just lost it. I couldn’t take the not eating and the frustration any more that day and I wasn’t very nice. I got upset and I told him he would just have to be hungry. There wasn’t anything he would eat and I probably made a scene. I felt embarrassed because I had gone next door to this little “deli” to get turkey meat. He will eat deli turkey meat. I said “I need turkey meat.” “The sandwiches are over there, miss.” “yes, but I need just the meat. No bread. No cheese, no mayo, no lettuce. Just the meat.” I had to explain it several times and he kept staring at me like I had 3 eyes. Finally he figured it out, but he told me I would have to pay for the whole sandwich. I was totally willing. We go back and sit down with our family and I have to go get my own food. Generally I have to rush to eat because I have had to run around feeding him first. When I got back my son told me he couldn’t eat the turkey and after 5 days I was exhausted and spent. I did not keep my emotions out of it. I did not help him with his anxiety. I had just had too much.

And then, we are back to #1 again, because the worse I make him feel about not eating, the worse his anxiety and the guilt are, the less successful we are at trying new things. So there you go, another failure.

There isn’t a happy ending to this story. I don’t know when we will get to a place where I am more comfortable with the whole food issue. I don’t even know how we will get there. I still have a reunion to try to prepare for. I still just want to go hide in the closet. BUT, there is this: if your child is like mine, know that you aren’t alone. And know you really aren’t a failure and you really aren’t doing everything wrong, even though it feels like it and well meaning relatives tell you that you are. Just keep swimming. Or tread water if you have to. Keep that nose above water if that’s all you’ve got. Hate mealtimes, try not to let your child see you roll your eyes or sigh deeply or go into the bathroom to cry. Or don’t if you can’t. It’s all ok. You can get through it again. Day after day. I mean, after all, what choice do you have?

SensoryBlogHop

(this post is part of a Sensory Blog Hop – click above to see blogs from other sensory families)