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Why Are They Crooked?

20 Feb

“One of the reasons I blog is because I can’t afford
to pay for proper therapy.”

Once we finally arrived in LA it was one of those hurry up and wait moments. After what seemed like hours but, really was only 20 minutes, the receptionist called Oli’s name.

“Have a seat and Beverly will be with you in a little while.” she tells us.

A little while? I was practically bursting from my skin with impatience.

The ocularist, Beverly walks through the door a few minutes later.

We started out with Beverly’s partner, Steven Haddad but transferred to Beverly after a few visits. She was working more on different custom made conformers although Oli’s had never been custom fit. What I mean is, no mold was taken of her eye sockets and then a conformer made based on the mold, like it is now.

I would have preferred to stick with Steven.

Beverly was nice, but she would just never listen to us as parents. She was a rough spoken, tall, blond, older woman who liked to think that exactly what the prosthetic looked like or how it was positioned didn’t matter.

I didn’t really care at first when it was a little crooked and never seemed to sit straight. After a few appointments, I started to get annoyed.

“As long as it doesn’t bother her, it doesn’t matter that it looks like one eye is looking at the ceiling or that one is turned in. The point is that it is bigger and it’s in.” she would tell me.

Yeah, Beverly it does matter because it bothers me.

I didn’t want her eyes to look crossed or rolled toward the ceiling.

She never listened though. I should have been more vocal about it looking right.

After all, we were driving 6 hours one way and spending about $1000 on each eye.

I guess I just didn’t want to make a big fuss and trusted that she knew best because she was the professional. This was a common theme in the first few years of Oli’s life. I just trusted that everyone treated and loved Oli like I did. I thought that if they were teaching or caring for her they would give it 100% each and every time.

Now I’ve learned that, that isn’t always the case. Most of the time it is, but I’ve learned to trust that nagging feeling in my heart that tells me something isn’t as it should be.

I trust my abilities as her mother and know that I will always do what’s best for her and if it differs from what someone else is telling me, I have the right to say no.

It is my job to always give 100% because it’s not always the job of everyone else even when it should be.

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See how her right eye looks like she is looking at the sky.

Real, Fake Eyes

19 Feb

“Never forget that anticipation is an important part of life. Work’s important, family’s important, but without excitement, you have nothing. You’re cheating yourself if you refuse to enjoy what’s coming.” ― Nicholas Sparks, Three Weeks With My Brother

A few days before Oli’s first birthday I woke up after only sleeping a few hours. The big day was finally here. The biggest day! She was getting her first pair of painted prosthetic eyes!

I could hardly contain my excitement. I couldn’t even imagine what she would look like. All of those feelings returned from when I was pregnant and would lie awake at night trying to picture her.

Before she was born I imagined her with big brown puppy dog eyes, long full lashes, and a sparkle that would melt everyone’s heart. Now I was imagining the same thing minus the long lashes and the sparkle. Little did I know how fantastically real, ocularist’s can make fake eyes. That sparkle was there, just painted on.

I rushed everyone through breakfast and we all piled in the car for the trip to L.A.

The drive seemed to take forever. Seth and I passed the time talking about what we each thought she would look like and what color we were going to choose.

“Brown. Or maybe blue. Kekoa has blue eyes. Or green like yours?” I couldn’t make up my mind.

“Blue. Kekoa and Thalia both have blue eyes and her little left eye looks like it is blue.” Seth makes the final decision.

“Blue it is.” I honestly really could have cared less by this point. All of those dreams of big brown eyes were receding from my mind and by the time she was 1 year old I just wanted her to have any kind of eyes. They could have been purple, red, or painted like cat eyes and I would have been absolutely thrilled.

Months and months of staring at blank eyes had made me realize how much I wanted to look at a pair of real looking ones. Although we had shed the ghastly pegs months ago, I was now anxious for the conformers to be painted.

I knew that I would love them, but I had no idea how much the prosthetics would change her whole face and appearance…

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Oli before she got her painted prosthetics.

Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

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It was sometime around this point in Oli’s life that I decided I would learn braille. I mean, why not, right? My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up. Why wouldn’t I want to learn braille so I could start teaching her immediately something that blind kids don’t really learn until they are about 5 years old(give or take-I’m not completely sure because Oli hasn’t even started it yet. So glad I ran that gauntlet 5 YEARS AGO!!).

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn’t picture herself as a smoking hot blond bombshell. Or is that just me? Maybe I watch too much reality TV.

I love how chic it is to say “housewife” now. Much better I say that, than tell people I don’t have a job or tell them I take care of my 3 children…all day…everyday…and I never get out of the house…or put real clothes on. . .or have any friends…

See how she’s holding her head. That’s me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities.

Before I had kids my road looked like this:

road 1

It was smooth, newly paved, no potholes and was 100% safe. I didn’t even need a seat belt.

When I decided to have kids it looked like this:

road 2

Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance. (I’ll bet you didn’t know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:

road 3

Most of the time I can’t even see where the hell I am going and have no clue where to turn next. I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head. A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That’s also why I’m holding my head.

And I’m holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall. It makes my head spin so I’m trying to hold it on so it doesn’t fly off while my mind is traveling at 500 million miles a minute.

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I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother. She learned un-contracted and contracted braille that same year. Along with the numbers, math, and maybe music? Basically the whole shebang of braille. She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

What Do I Know? I’m Only Her Mother.

18 Feb

“Sweater, n.: garment worn by child when its mother is feeling chilly.” ― Ambrose Bierce, The Devil’s Dictionary

After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay. As they wheeled her upstairs I am staring down at my daughter’s beautiful face. My mom calls her a china doll because that’s what her face looks like. Especially when she was a baby and sleeping. Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head.

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I’m a little taken aback by a stranger saying it. I just wasn’t that used to it. She was very beautiful, but because of her eyes most people just didn’t say anything.

“Thank you.” I tell the nurse.

“Let me know if she wakes up and seems like she is in pain. She has some medication ordered for her, but I don’t want to give it unless she absolutely needs it.” the nurse finishes up and leaves the room.

I was thinking “Oh good. This nurse won’t make her wait forever when she is hurting.” I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited. The doctor had warned me that she might be a little more uncomfortable because he didn’t put in a G-tube so there was no way for gas to escape. Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp. The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn’t be too bad for her and she would adjust quickly.

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli’s wailing. “Yes?”

“Yeah, I think she needs some of that magic juice ordered for her. I think she is in pain.”

“Oh I think she’s okay. She’s probably just hungry.”

I stare at her incredulously. Ummmm, no. I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

“No. She’s not okay. You need to give her some medicine.”

The nurse gives me a disproving look and then leaves to get the medication.

I couldn’t believe that she was actually going to argue with me!

She came back in the room and gave her the medication. Throughout Oli’s 2 day stay this was an ongoing fight with this nurse. I’m not sure what the problem was?

By the next morning Oli was much better and didn’t seem to be in pain at all. I got to feed her Pedialyte first which she inhaled (as much as I would let her. I had to be careful that she didn’t suck in too much air). Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better. The doctor was right. The gas pains didn’t seem to bother her at all. The only downside is when she gets the flu she isn’t able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere and feeling better she dry heaves for hours. It’s no fun for her.

As for the nurses I’m not sure what the problem was. They really should learn to trust parents and understand that they know their children. I didn’t want my baby doped up either but I knew that she was hurting and isn’t that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials. What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born. I can’t possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can’t remember if she is a boy or a girl. . .

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My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

Total Mommy Meltdown

17 Feb

“There’s no bitch on earth like a mother frightened for her kids.”

― Stephen King

Finally after what seemed like hours of waiting in those little blue plastic chairs and watching cartoons on the Disney channel in the kids play room, the nurse called my name from the doorway.

“You can go back and see your daughter now. She’s awake, but we just got her into the recovery room. Normally I wait to bring families back until the kids have been there a little while, but since you work here I made an exception.”

I thanked her profusely for letting me go back early, but then was wishing she had waited a little bit longer as I rounded the corner and could hear Oli screaming at the top of her lungs from the end of the room.

I quickened my pace to get to her bedside and then looked at the recovery room nurse as she straightened out cords and tried to get her connected to the monitors.

“Aren’t you going to give her some pain medication?” I ask the obvious question when ones child has had surgery and then is screaming like they are still slicing off some major body part.

“Yes I’ll get her something in a minute.”

In a minute? Can’t you hear her pain? This purple color is not the normal hue of my daughter’s face.

I know what it’s like to be the nurse and have anxious parents breathing down my neck, but come on lady. I understand that you are busy and it is obviously important that you straighten out these cords (for some reason unknown to me), but give her something. I think she might be dying.

She finally untangles the last knot in the stream of medical cords and saunters off to get Oli pain medication.

By the time she came back I don’t think I had ever seen Oli quite the color that her face was now. I had no idea, until that moment, that human skin could turn that color. Her face had a kind of red, purplish tint that only the truly pissed off baby can become.

Now I am quite familiar with it. Now I know that when Oli turns that color I better get the hell out of her way in about 10 seconds because she may spontaneously combust. Or try to bite, scratch or beat me to death. Good thing my peanut is only 40lbs soaking wet and has yet to actually hurt me. ( She is usually very sweet. I promise… Except when she’s not. )

The nurse gave her some medicine and Oli eventually quieted down and went to sleep.

“This is normal. Sometimes children have that kind of reaction to the anesthesia. She should be better after a little while.” The obsessive compulsive nurse tells me.

“Okay.” I am thinking yes, I realize that, but it does not give me any comfort because I am watching my baby have a total and complete meltdown and therefore am well on my way to total meltdown phase myself. Watching her scream louder than I have ever heard her scream does not in any way feel “normal” to me.

However, thank you for trying to reassure me.

I don’t feel any better.

Please Don’t Let Her Arm Fall Off

16 Feb

“Sometimes beautiful things come into our lives out of nowhere. We can’t always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
― Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband’s enthusiasm for an adventure took a back seat. We made it to Oli’s surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious. We got to the hospital 2 hours late to her appointment. I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards. We were assured that Oli was in good hands and were sent to the waiting room.

I had never been the parent of a patient before Oli was born. One time I had to take Kekoa to the ER when he was 4 months old because of a high fever. We were only there long enough to make sure he didn’t have an infection and then left.

This was nothing like that.

I knew they were going to be cutting into my baby, however minor the operation was.

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child. My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child’s surgery. Many times I spoke the exact same words spoken to me that morning, “She’s in good hands. Everything will be fine.”

Of course there are no guarantees. I knew that. I was terrified.

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life. Oli has had a few other surgeries since then and it never gets any easier.

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn’t properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off.

imagesCA2CPZPC

It’s awful!

Luckily none of those things has ever happened.

I want to trust people taking care of Oli. I really do. Most of me has to or else I would drive myself crazy, but this is my baby girl. I can’t trust them completely. I don’t think any mother ever does.

Moms worry about our children the moment we realize we are having them. It’s not any more difficult, I don’t think, when you have a child with special needs. We are just given more opportunities to worry. And we are given more opportunities to trust people and have a little faith in them. Sometimes they let you down, but most of the time they don’t.

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

An Adventure With Seth

15 Feb

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The morning of Oli’s fundoplication surgery (reflux surgery) I awoke in the darkness. I turn over and glance at the clock.

Uggghhh…4am. We had to be at the hospital by 6:30 and it was an hour drive. I shook Seth awake and then got into the shower. A few minutes after I got in Seth knocked on the door.

“You’re not going to believe this Shannon. There was a snow storm last night.”

“What?” Snow in Las Vegas. Sounds like no big deal right? The first time I saw flurries in the desert I laughed that they would even have the nerve to call the slightly thicker rain drops “snow”. That wasn’t snow. These people had never been to Iowa. I had about the same amount of trust in my husband and his knowledge of snow as I had in the people of Las Vegas. He was from Hawaii.

I knew that it was probably just cold and raining. At most it might look like snow falling from the sky, but would melt once it hit the ground. We were in no danger of missing my daughter’s surgery appointment. I forgot that in order to get to the appointment we had to drive over the “pass”.

Pahrump sat higher than Las Vegas and in order to get there we had to drive over a mountain at 9,700 feet elevation called the pass.

As we left the house I wondered if we really were going to make it. Snow was actually sticking to the ground. I had heard when we moved to Pahrump that the pass occasionally closed when it snowed up there, but that it only happened maybe once a year. Surely it wouldn’t be closed the one day that we absolutely had to get to Vegas. Surely our luck wasn’t that bad.

It was.

As soon as we reached the base of the mountain I could see police lights directing people to turn around and go back.

I looked over at Seth who was driving. “What now? It’s going to take a month at least, to get another surgery appointment.”

“We’re going. I will get her to this appointment.” He says with determination and a look of excitement in his eyes.

Oh no. I’ve seen that look before. That look that comes from a man who loves off-roading and driving through the back desert.

“Are you serious? The gravel roads are going to be bad. I think we should just call and cancel.”

“Nope. Don’t worry. I’ll get us there. No problem.”

I am very worried.

Seth likes a good adventure and his adventures usually end up with us being stuck somewhere. I have been on many of these “adventures” with him. I have been stuck in the desert overnight, in the mud, with nothing to drink but cheap beer and coyotes circling us looking at my little dog like a quick and easy meal. I have been stuck 5 miles from the lake, with a flat tire and no jack, no one around for miles, for hours in 110 degree heat, with nothing to drink but cheap beer. Don’t worry. We always had beer.

These are just a few examples. Others include motorcycle trips in freezing weather and extreme heat when I have been totally convinced I was going to die.

I know Seth’s idea of an adventure.

This could end badly.

Getting Rid Of The Reflux

14 Feb

“While we try to teach our children all about life, our children teach us what life is all about.”

― Angela Schwindt

Finally when Oli was 7 months old we made the decision to surgically fix her GI reflux.

I could no longer watch her struggle to keep her food down. Despite thickening her formula, a strict regimen of reflux medication and eating baby food, the reflux was not improving.

We had to wait several months before making this decision because she didn’t fit into her GI doctors normal category of surgical patients. She was still gaining weight, growing, was at that time still sleeping, and was not screaming most hours of the day. The exact opposite of most of his patients.

He kept putting off the idea of surgical intervention until one day when I brought Oli in for her monthly check up.

“How is she doing?” He asks quietly. He was a tall, gentle, soft spoken man with an awkward personality.

“Well not to good. This cannot be normal.” I tell him. Frustrated with her lack of response to his treatments, my goal today is to show him how miserable it was for her. I laid Oli face down on the crisp, white exam paper.

“Now just watch.” I say as I encourage Oli to lift her head. This was an ongoing struggle for her because of her lack of visual motivation,. But also because every time she exerted any abdominal force whatever was in her stomach seemed to become pressurized and shot out her nose. As he is looking down at Oli she performs right on cue. A thick stream of chunky old milk, tinted green from her lunch comes out her nose.

“This happens every single time I put her on her tummy. You have to do something.”

“Yes okay. I guess it’s time to look into surgery.” He relents.

“Great. I know a pediatric general surgeon who I’m comfortable with. I’d like him to perform the surgery because I know he won’t put in a G-tube unless she absolutely needs it. I don’t think she needs one and he agrees.”

A few weeks later Oli had the surgery. She did not need the G-tube. I was happy that I had found a doctor willing to listen to me and not just put one in, as was the general practice.

One week after the surgery she began sitting up and was finally comfortable lying on her tummy.

I Still Remember How You Made Me Feel

14 Feb

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Despite my negative experience with some of the doctors when Oli was born there was one more nurse who would make a profound impact on my memories of those 4 days in the hospital.

Her name was Sharon and she was my labor and delivery nurse.

She was a little bit older than me with exceptionally long, dark blond hair. She seemed to be just a step out of time with today and wore her bangs in a feathered style around her face. She was very sweet and one of those warm, compassionate people who make you feel like you’ve known them forever.

She encouraged me through out my labor and didn’t even bat an eye when I threw up moments before Oli’s birth.

“It’s okay. Happens all the time.” She reassures me, even though I am completely mortified having displayed my dinner to her and my OB/Gyn not to mention the NICU doctor I worked with.

After Oli was born she let me spend a considerable amount of time with her before taking her to the

nursery. She even apologized when she finally laid her in the bassinet to wheel her down the hall.

“I probably should have taken her down 20 minutes ago since she’s a little early, but it’s so important to bond with your new baby. Besides, she looks perfect.”

Two nights later as I’m sitting on the hospital bed I hear a faint knock at the door. Sharon peeks her head inside.

“Mind if I come in?”

“No. Please, come in.” I’m nervous as she sits down on the end of the bed and am wondering if she heard about Oli. It quickly becomes apparent that she has when I see her eyes fill with tears.

“Oh Shannon. I’m so sorry. One of the other nurses told me about your baby. I just couldn’t believe it.”

“I know. I’m still in shock. Thank you for visiting us.”

I’m trying to control my own tears now. Not just because I am again reminded of all that has transpired in less than 48 hours, but because I’m overwhelmed by the amount of empathy radiating from this woman who was a stranger to me two days ago.

“Do you need anything? Can I help you in some way?”

I just gave her a hug, told her thank you and assured her that it was okay and I would be fine.

I should have told her that the simple act of having the courage to walk into my room, cry with me and tell me she was sorry had done more for me than she will ever know.

I wish I would have known then, how that moment would make me feel 5 years later.

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