When clothing is more than cloth and thread.

A few years ago, Scooter wore a shirt to school that Bugster had given her. She loved that shirt. After all, her sister had given it to her. It was a black thermal underwear shirt that had little skulls all over it. I personally can't stand skulls on shirts, but these were so little that it was easy to forget that they were on there, and because of her affinity towards it I let her wear it. It did say, "La De Freakin' Da" on it, but she didn't know what it said. She just thought it was fun.

She wore it to school at least a couple dozen times with no problem. Then one day when she wore it, someone said it was inappropriate to wear to school, and she was told to turn it inside out and wear it like that for the rest of the day. She had no idea what she had done wrong. (Neither did we, for that matter, since they'd never had a problem with it the first 2 dozen times she'd worn it!) She just knew she felt horrible and was totally humiliated by having to wear it inside out. After all, that meant that any student or faculty who saw her knew that she was a bad girl for wearing it. 

We still don't know why the teacher didn't: a) call us and let us know there was a problem, b) put a tshirt on over it that we'd sent in for spare clothing for her in case of an accident, or c) take it off and have her wear a spare shirt for the rest of the day. But she had the same teacher that sprayed her with industrial strength air and surface sanitizer. So poor Scooter didn't have much of a chance in the entire situation. When she got home, she was heartbroken.

She got off the bus absolutely glaring at me and hitting herself in the head alternating with trying to pull her sleeve off. She was exceptionally upset. When we got inside, and I read her communication notebook, I guess I could understand where they thought it was inappropriate, but I still didn't understand why they felt the need to humiliate her. Then again, we didn't know that she was being sprayed yet, either.

She immediately tore her tshirt off and wanted to throw it in the garbage. She wanted nothing more to do with it. I told her I'd wash it up and get rid of it, but we didn't need to throw it away. It was gone within the week, and she never had a problem with it again. 

Until last week, that is.

Scooter's classroom had a community outing, and the forecast was for it to be 85 degrees. It didn't get that warm. Only got to the mid-60s. She'd worn her very favorite long-sleeved tshirt that her my mom and sister had gotten her. She absolutely adores butterflies, and this tshirt had huge ones on it. It couldn't have been more perfect. Long sleeved and butterflies!  She wore a denim jacket, because it was chilly when she went to school, and we felt that was perfect with the weather the way it is. I mean, she can wear long sleeves in the summer and never break a sweat. I've never been able to do it, but she sure can!

When she got home, though, she wasn't wearing the shirt. She was wearing a spare short sleeved shirt that we'd sent in for use in the case of a spill. She was so upset. Before she even got off the bus, she signed to me that it 'stinks' and 'broken'. The broken had to do with her necklace that had come apart, but the 'stinks' was because she didn't have her shirt on. I just figured she'd gotten it dirty. 

Wrong.

The teacher felt like she would be too warm in her long sleeves and denim jacket, so she took her tshirt off her and had her wear a short sleeved one for their community outing under her denim shirt. I didn't receive a phone call. Just a note after the fact. While I was reading the note, I saw in my peripheral vision that Scooter had taken the shirt and had headed into the kitchen with it. I assumed she tossed it downstairs, so it could be washed, but I didn't check that she had.

The next day was trash day, and Hubster took care of it. I didn't really think much of it until it was time to get the red clothes washed yesterday. I looked all over for the tshirt. 

It was nowhere to be found.

My heart just sank. When she got home from school, I drew her a picture of the shirt and reminded her of the situation, and then I drew a picture of the garbage can and a picture of the stairs with dirty clothes at the bottom. I asked her, if she'd thrown the shirt away in the trash can, or if she'd tossed it downstairs to be washed.

She pointed to the trash can. 

I asked her, if she'd thrown it away, and she signed, 'yes'. Then she signed, 'sorry'. I just about cried.

Even though she apparently had no negative reaction at school to changing into a different tshirt, she obviously thought about it for the rest of the day. And I know that in her little mind it was no different than when she had to wear the tshirt inside out, because she'd been 'bad'. 

My heart breaks for her. That was probably her favorite tshirt. She would get it out of the dirty clothes and wear it, if she didn't feel like I'd gotten my act together quick enough with the laundry. She'd wear it dirty for weeks at a time, if I didn't insist that it needed to be washed. And it just makes me so sad that even if she was confused about what I was asking her, and it shows up somewhere around her that it will never be as special to her as it once was. 

It's not like she gets to ever have a boyfriend or even a real friend. She'll never be able to get a job or go to college or have a family of her own. She doesn't play with toys much at all. In fact, her scarves, jewelry, boots, and clothes are really all that matters to her. I mean, she's got a toy here and there that she loves, but they are the  rare exception. I think one reason that they mean so much to her is that they are a way for her to express herself. And being nonverbal, expressing oneself is really, really important!

I know that the teacher was doing what she thought she could to help Scooter be more comfortable during their outing, but I really wish she'd have called me first to check with me before she took it upon herself to have Scooter change clothes. I made it very clear that I am not angry with the teacher but that I expect her to talk to me before she does something like that again. 

And then I cried my eyes out at Scooter's loss. 
    

    

Unsettled

Today has been ... unsettling. That all-day-long-sort-of-unsettling that keeps a person from being able to concentrate on anything for more than a moment or two.

The thing is, things have been going along pretty smoothly, and I really can't complain. Hubster's layoff has been one of the best things that have ever happened to us. My back has slowly, but surely, been getting better, and my hips aren't killing me all the time anymore. I haven't lost anyone close to me, and except for the occasional cold or ear infection, we are healthy.

But I had a nightmare right before I woke up this morning that has had my head in a tailspin all day long. I'm sure it has to do with the recent terror attack in Boston, and the death and dismemberment of so many people and the fertilizer plant explosion in West, TX. My heart aches for all of those affected by it, whether they were direct victims, families of those injured or killed, or those who had to see unspeakable things when they rushed in to try to help those who were hurt.

I didn't really think I was gravely affected by it, since I didn't personally know anyone who was hurt or terrorized. I've shielded the girls from watching the news, and I've personally tried to stay away from it myself. I've found in the past that I can so easily be sucked into a great abyss of darkness, if I focus on tragedies like this too much. And my kids don't need for me to live in an abyss. They need me to be their mom.

Normally, I don't repeat bad dreams, because they're usually a distant memory by noon. But today, I need to write about my dream, because it will let me forget it and will let me sleep tonight above ground. Now is the time to x out of this post, if you are affected negatively by other people's dreams.  

In my dream, Hubster and I had taken a trip of some sort to a large city. I don't know what city we were in. All I know is that it was large and unfamiliar. It apparently had some good shopping though, and we'd stopped at some mega store to look for something for the house. I only remember that it was small, because we kept turning it over and looking at it and one next to it to determine, if it would be a good fit in our home.

After looking at the thing for 10 minutes or so, we realized that Scooter was gone. We were frantic. We started calling her name in a panic and panicking, because we knew she couldn't let us know that she heard us. We saw some checkers near the front registers, so we asked, if they had seen a young girl and described Scooter to them.

The gal we spoke with said, "I haven't seen her, but I know a young girl died outside the front doors a little bit ago!" She went on to say that the girl died on the tracks...I don't know, if they were subway tracks or from a trolley car or what, but they were apparently right outside the front doors of the store. 

Our hearts sank. We instantly felt guilty that we'd let her out of our sight pictured her tripping onto the tracks. I remember going down to the morgue and trying to identify the body, and being relieved that it wasn't her but being absolutely terrified that we'd taken the time to go to the morgue. That meant that we'd wasted precious time that we could have spent looking for her at the store. 

The dream then morphed into me telling Hubster's niece that I was so incredibly sorry that I had dreamed that she had died. She didn't want anything to do with me because of the dream. I think that even in my sleep it was too much for me to actually dream that something had really happened to her, and that I somehow convinced myself in my dream that it was a dream about someone else.

Around noon today, something the clerk said came back to me. When she was telling us that someone had just died out front, I'd asked her when it happened. She said that the girl had fallen 2 or 3 hours before, but that she had died about 20 minutes before we asked her about it, so I  have no idea why the timing didn't dawn on us in my dream, and we went to the morgue instead.

All I know is that this nightmare has clung to me like the smell of a bad cigar all day long. I haven't been able to shake it, and even recounting it to write it down has caused my stomach to lurch with anxiety. We've had a couple of close calls over the years with losing her for a few minutes, once when she decided she couldn't wait to use the restroom, and we found her in one of the stalls in the mens restroom at the zoo, and the next time when she decided to go visit the neighbor when we thought we had all the doors locked to the point that she couldn't get out. 

Both situations caused untold anxiety and worry, and rightfully so. Neither situation should have happened. At the same time, a parent can easily be distracted by one of their other children, a phone call or a conversation. We are fallible. After all, we are only human. Still. I think it's time we find something to aid us in finding her, if she's ever separated from us again.

Life, loss and letting go.

For years, I've had trouble holding onto things.

Obviously, or I wouldn't be a hoarder, right?

Now that I'm back on my medicines and thinking more clearly, I'm making hard decisions about some of those things. With other things, my decision is not to make a decision right now.

For example, I've decided not to get rid of the ultrasound pictures of two of my pregnancies that ended in miscarriage. I didn't get an ultrasound the third time. By then, I knew what was happening, and I didn't want the heartache of seeing what was happening on a screen. I didn't want a picture to remind me. I don't regret that decision, but I also don't regret the decision of getting the pictures of  the first two.  

The pictures still bring me back to the loss I felt at the time...

The physical and emotional loss of the miscarriages themselves was hard enough. After all, we'd wanted every single baby I carried. But to be told that the little sac was empty was about more than I could handle. To know that our little ones had stopped growing just shortly after conception somehow made it worse. To know that they'd never even had a chance just killed me. 

It also made me feel like I had nothing to mourn. That I hadn't actually lost a baby, because there had never been a heartbeat. It didn't help that others actually told me I'd never been pregnant, since the sac was empty. That I didn't lose a baby. 

But I did. 


Three times.


I don't know, if they thought they were helping by minimizing my loss, but their words made it no less real. If anything, they made it worse. 


So I've kept these ultrasound pictures all these years. They are the only proof that we lost our babies. The only proof that they ever existed in the first place. Somehow, I feel that letting them go is saying they were never important to me. That somehow it's saying I didn't love them. That I didn't start thinking of names, imagining the nursery, picturing our babies' little faces in my mind the very moment I knew I was pregnant. 


I'm still not there. I might be someday, but only time will tell.


In the meantime, I've made some progress.


In the last several days, I've sorted through two small boxes that had each held six boxes of baby wipes, two apple boxes, and two  18 gallon totes full of paperwork. I've filled two huge black contractor bags with trash and ten more grocery bags with shredables. Five of them went out the door on Friday, and the rest will go out the door tomorrow. The stuff I've kept has been sorted into 3 categories. 

A small crate holds bills, paystubs and medical miscellaneous that I will scan and eventually toss into the shredables. A small box holds greeting cards and letters from loved ones that I will eventually scan. I don't know that I'll actually ever throw them away, but I will be scanning them, so they aren't lost forever, if something should happen to them. And the third is an apple box less than half full of drawings the girls did, stories written, IEPS and other miscellaneous things I'll be scanning when I get to it. 


My goal is to discard as much as possible once I've scanned it. Normally, I would try to scan it all as I sort it, but I've got to get through the boxes as quickly as possible, so I can find the birth certificates and social security cards I need. If I could just go down to the courthouse and order more, I would, but all 3 girls were born out of state from where we live now, and it's not as easy as it seems. It would take several weeks and $30 to $40 each to get copies, so I'll just keep working on the paperwork and scan things later.


I'm making progress. It's slow, but it's steady.


And I'm learning to let go. 

I'd rather not go there.

Early this evening, I was talking with my sister. Her 14.5 year old daughter was getting ready for a school football game. She and her 3 friends were in the bathroom putting on makeup and curling hair and giggling and having fun. And I was suddenly transported back to my high school years and the anticipation of going to the football games. They were always so much fun. There wasn't a lot I really liked about high school, and I'd never go through those years again for a million bucks, but I loved the football games.

They were always so much fun. I rarely watched the game to actually know what was going on, but I loved listening to the cheering and the laughter of the people in the stands. The happiness was contagious on those crisp Fall evenings. And there were always the dances after the game was done, where we'd dance to I Love Rock-n-Roll, Freeze Frame, 867-5309, and the like. To this day, I'm transported back to that time in my life when I hear these songs.

I'm just.

There.

When I got off the phone with my sister, it suddenly hit me that none of our daughters had ever experienced what I did. We homeschooled Bugster through her junior high and high school years. She had plenty of different opportunities that she'd have not had in a public school setting, but she also missed out on things like football games and dances. I suddenly felt horribly guilty and called her up. I couldn't help but cry over her having missed out on what surely would have been some of her fondest memories, if she was anything like me. And she's a lot like me.

She assured me that she did get to go to football games and had the fun and excitement of cheering on the teams. She got to go to a prom with Bubster, and I know she had the time of her life. She assured me that she didn't feel like she missed out on anything and that she was grateful for the opportunities that she did have.

While we were talking, it hit me so hard that Hopper and Scooter won't ever have these kinds of memories, and although I'm thrilled that Bugster is satisfied with her experiences, it kills me that Hopper and Scooter miss out on so very much. It hurts that they don't have friends, that they'll never kiss a boy, that they'll never know the fun of putting on makeup and getting ready for a football game. It's hitting me even harder as I type this. My eyes are barely more than slits.

This is Hopper's senior year of high school. I'm sure that's one reason it's hitting me so much harder. I'm thankful in indescribable ways that neither of them can truly understand what they are missing, but it me hurts to the very core of my being. The loss I feel is so incredibly deep. *This* is why people say, "I'm sorry" when they hear you have special needs children.

All these years, I've had to focus on the positives. I knew that, if I allowed myself to go 'there', that I might not survive. 'There' is a very dark place with no hope. It's sad. It's consists of shattered dreams and immeasurable pain. It's a world of despair. There's a really good reason I have chosen not to live my life 'there'.

And now that I've allowed myself to go there for a few hours, to grieve this tremendous loss, I need to leave. My visit is over.

I will be happy and strong once again for my girls. I will be thankful that they don't know what they're missing. I will be so very thankful that they will never be hurt by a boy who just wants to use them. I will be thankful that they will not understand the pain of being on the receiving end of gossip. I will be that they are the happiest two people I've ever known in my life. I will be happy that their love is unconditional. That their trust in us is undying. I will be forever grateful that they are our daughters, and that they're not with someone who doesn't love them or try to understand them.

And I will be doing everything in my power to arrange for us to go to a football game as a family. I will do everything I can to prepare Hopper, so she doesn't have a panic attack at the thought of us being at her school and seeing people she knows in the stands. I will do everything I can to make sure she has some wonderful memories of her senior year of high school. I'm hoping that with all of us there, including Bugster, Bubster and Frank, that it won't be as hard on her. That she will instead have wonderful memories of a wonderfully fun day.

I pray the girls will always be secure in how much they are loved and adored.

They deserve that at the very least.

Ouchies and bandages.

From time to time, something current reminds me of a painful part of my past, and I will likely be writing about it on my blog. Such was the case of yesterday's post. A friend's friend lost their baby this week. She was 19 weeks along. The memories of my own miscarriages came flooding back.

Much of the time when dealing with grief and loss in my life, I've pushed my feelings aside and not dealt with the feelings. And because I started this blog to try to deal with why I have fallen into hoarding, I feel like I must acknowledge my feelings in order to get past them. Obviously, ignoring the hard stuff hasn't worked so well for me.

Writing often helps me process what it is I'm feeling. It helps me move on instead of staying in the past and living in the hidden grief. I'm just muddling through the best I can.

Plus blogging is cheaper than therapy.

Someday.

I was 5 years old when my dad brought mom home from the hospital. She had gone in to have our baby brother. She came home with empty arms. Our baby brother died when he was 3 days old as a result of an alcoholic doctor. Lawsuits were not common 40 years ago when we lost him, and I don't know that my parents would have sued anyway. The doctor, whose negligence resulted in his death, was very dear to my parents, and to say he felt bad about it was apparently an understatement. From what I understand, he stopped delivering babies after he inadvertently killed the youngest member of our family. It tore him apart.

But I don't think it could have affected him nearly as much as it affected our family. My mom never has gotten over it. For a full week before and after his birthday every year she is almost non-functioning with grief. I'm sure she pictures what he would have looked like, what he would be doing for a living, how many children he'd have had, but along with that, I know she has to wonder what he'd have been like as a little boy. Would he have been more sensitive like my younger brother or more of a rebel like one of my older ones And I'm sure she has wondered repeatedly what she could have done to have prevented it from happening and probably even suffered a bit from survivor's guilt. My mom's heart is huge, and she'd much rather have given her life, if his had been spared.

And while we never lost a baby after birth, we did lose 3 little ones who never made it into this world. The grief was overwhelming. We fell in love with every single one of them the moment we found out we were expecting. We wondered who they would resemble. Would we finally have our little boy? What would it mean for Hopper and Scooter? If the babies didn't have the genetic condition the girls have, would they ever think that they weren't good enough, and that was why we tried for more? What would it mean for the baby having 2 older sisters who they would eventually surpass in ability?

We hadn't come to an answer for any one of the questions when we lost them at 16, 13 and 9 weeks. We picked out names. We felt the first one we lost was finally our little boy. We named him Shamus Andrew. We sensed our next was another little girl. We named her Sylvia Adeline. We didn't name our last one. We didn't know about the pregnancy long enough to get a grasp of who we had lost, but the loss was tremendous.

It's amazing how big a void losing a child can leave in your life. Suddenly all the hopes and dreams you had from the moment the morning sickness started are ripped out of your hands - no matter how desperately you try to hold on. Sadly, it is totally out of your control, so you reach out to try to maintain control as you feel yourself free falling. You cling to what you do have. You hug your children a little tighter and more often. You never want to let them go.

For me, not only did I cling to my girls and my husband even more tightly. I hung onto anything and everything of theirs that had memories attached. Baby toys. The baby and maternity clothes were the hardest. I take that back. I still haven't been able to let go of the baby blankets I made. I'm not sure I'll ever get rid of them. I held onto the hope that one day, some day, I'd have a reason to wear my favorite blue and black plaid flannel maternity shirt that I wore with all 3 girls. That someday we would put the little pink bonnets and lacy dresses on another little sweetheart with a thick head full of hair.

Someday.

It's hard to give up Someday.

Someday is so full of promise.

Someday is so full of hope.

Someday is so filled with dreams.

It's really hard to give up Someday.