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The Lonely, Lonely World

In 2008, there were around 6,700,000,000 people (. That's almost seven billion people...seven billion! How can there be nearly seven billion people in the world and yet still have so many of us feel so lonely, forgotten, invisible? 

Over the last few months, someone near and dear to me revealed that the loneliness was such that emotional companionship was found elsewhere. Another person who is near and dear to me revealed that the opportunity was there and it took nearly everything to prevent it. Both of these people were married, both have young children, both have a child with special needs, both have the weight of the world on their shoulders, and both of them felt that they could not talk to their loved ones for fear of causing more stress for them. These two wonderful, loving, caring, and amazing individuals were lonely, though not alone.

Parents of children with special needs often feel alone in the world. We feel as though we are the only ones in the world who are dealing with the things that we deal with. The stress of our children being successful in school, helping to keep the meltdowns, rages, and ups and downs of this life at bay, and most of all, the stress of trying to raise these beautiful children with a happy heart. Aside from the child with special needs, what about these amazing siblings? These children are often forgotten, or get the brunt of the anxiety induced meltdowns. They get the "not right now, I've got to do such and such for your brother or sister", "Not right now, I need to make this phone call, send this email, fill out this form for your brother/sister." Yet, they are such loving, empathetic and amazing beings. It's impossible to believe that anyone else in the world can understand what we live with trying to meet the needs of everyone around us.

Lately, I have started reading more blogs by parents with children who have special needs. One thing that I have learned is that nearly all of them post more of the positive things that happen than the negative, they don't talk about the lowest points in parenting these special little gifts from God. I have a couple of friends who are dealing with very similar children, but even they are so busy that I don't feel like I can really tell them what's going on, I feel that I can't lean on them because they are like me - they are just barely holding on themselves. In a lot of ways, I feel like those two people who are so near and dear to my heart. How can I add my burdens to my friends? If I do and they fall, then is it my burdens that gave them the final push? Would that be my fault? I am so sorry if that is the case, and that's why I try so hard to just hold all of my thoughts and fears in. I don't even feel safe blogging all of my thoughts because I don't want others to think that I don't love my son. The fact is, I love my son so much that my heart hurts, I have true, physical pain when we are going through difficult times and when my baby hurts. And when my baby is happy, my heart is so joyful that I cry tears of joy. The happy, free from anxiety moments for my baby boy are so few and far between that they make my heart skip beats, they make me smile and cry and want to scream to everyone in the world that we have had a happy, good, wonderful experience. However, when I do, I receive comments that my bragging is annoying. I get private messages that people are sick of hearing me talk about my "wonderful, perfect children". If only they were as perfect as I like to believe they are. If only those people had an idea of just how important those happy times are in the life of my amazing son. 

How can there be nearly seven billion people in this world and yet, we are lonely? I am lonely. I have my wonderful husband, but as a Mama, I am lonely. I feel like no one else in this world is living with the situation I am living with. I am sad. I feel lonely, forgotten, and I feel invisible. I know I'm not alone, but yet I am lonely and heartbroken.

Soccer Talks

Our afternoons are crazy. They are composed of snacks for the kids, Gmail's latest obsession and him imposing the obsession onto his sisters. It includes whining toddlers, crying baby, and usually a good meltdown or two to keep things interesting. Whatever the afternoon brings, it brings nothing but excitement and it never brings a dull moment...never!

Today, we were working towards dinner time, play time, and the likes. Daddy was home from work and the kids were all begging for his attention. (Him being home early is a special treat that we all love. Him? I'm sure he often wishes he had stayed at work for a bit of peace and quiet. HA!) Gmail was working on homework, but got sidetracked by the sudden memory of the soccer moves he has been trying to perfect. He insisted he must use the computer RIGHT.THIS.MINUTE or the sky would fall, the world would stop spinning, something. When he was told no computer until homework was done, we got our second meltdown of the day. He cried, he yelled, he insisted that if he worked on all of that homework, he would *never* get to go outside since it would be too dark. He needed someone to go outside and teach him the "stutter step" immediately. The world really would cease to exist as we know it if he did not get to use the computer right.that.very.moment.

Just 15 days ago, I wrote here that I have decided I would no longer fight over homework. I knew that day that my relationship with my beautiful son is much more important than homework. While I want him to do his homework and I want him to do his very best in school, while I believe homework has a place and is important, there are things more important. My son knowing that beyond everything else, when all is said and done, his Mama loves him. THAT is more important than homework. I felt this day going back to that day. I felt the anxiety building in the house, the voices were raising, the little ones were becoming more scattered and wound up, and the day was just taking a downward spiral much quicker than I cared to see. At that moment, the world really did stop...Not with a peaceful end, but a raised voice from me.

"Ok! Fine! Let's go! I'll teach you the damned stutter step if it'll help you calm down, LET'S JUST GO!!" Everyone in the house stopped, looked at me, and Daddy said, "No, I'll go...I'll take him." Oh heck no! At that point, I was going to prove myself, I was going to prove that *I* could teach him the stutter step. I grabbed my shoes, Gmail grabbed his shoes, we raced to see who could tie them faster, and I sent him outside. He resisted for fear that I would not come, but at that point, come hell or high water, I was going outside to teach him the stutter step. He walked out the door and I turned around to my wonderful husband, the most amazing Daddy I know and said...

"What on earth is a stutter step?" I was trying to keep a straight face, but even sitting here I am giggling. I know the basics of soccer and that's it, the BASICS. This is a soccer ball, this is a shoe... shoe + soccer ball + goal - goalie = score. Through giggles he showed me how to do the stutter step (which by the way looks like a fancy two step in my eyes) and off I went.

Gmail handed me the ball, I showed him how to do a stutter step, he stole the ball from me and did something that I insisted was the best stutter step I'd ever seen in my life and his face lit up. When I say lit up, his face could have brightened the darkest skies. It was the most beautiful smile I'd seen in a long, long time. We started giggling at me, his mama who is fat and grew up in the olden days when there were no light bulbs (yes, he mentioned my age in relation to light bulbs today), outside running around in the back yard, and playing soccer. We laughed at us both tripping over the ball, the neighbors dogs running up and down the fence line with us, and frankly, just us. We laughed together and had a great time. It was a time that we both desperately needed to take the stress off of our daily homework, be nice to your sister, please don't say poop again or I will scream talks. We had soccer talk and soccer fun. It was beautiful, he is beautiful.

FML

I absolutely despise this term. DESPISE it. This term makes me cringe to the very bottom of my being. God has blessed us with every breath we take. He has blessed us with the sunrise, sunset, clouds, rain, happy moments, and sad. He has promised to hold us close, protect us, and love us unconditionally in a way that as humans, we cannot begin to comprehend. Saying FML, to me, is like telling God that you don't care about the blessings and love that He has given us.

How precious is Your steadfast love, O God! The children of men take refuge and put their trust under the shadow of Your wings. Psalm 36:7

Today was awful. It just plain stink, stank, STUNK! The days that are like this seem to be the days that our son thrives on. Despite his Asperger's and his inability to read body language, other people's emotions, etc., he seems to pick up on the fact that I was grouchy, irritable, felt bad, and exhausted. This happens in a way that elevates his mood into a form of mania that makes me was to run far, far away. I do not understand and never have understood how this happens, it just does.

So, he was elevated ... did I say elevated? Manic? Maniacal? Just plain crazy - aggravating, silly, mean (though irritatingly mean, not hateful mean), loud, and so on. Oh boy, none of us could get a break. The problem is, when he is like this, he is also very argumentative. He is argumentative in a way that he thinks he's being funny, but the mood and level of irritation has gone from bad to worse, so no one is in the mood for his mood and that, my friends, is where the fun hell begins. It is something like this, "Son, it's time to do your homework." (I'm doing something.) "You have known all week about this project, I've tried to help you. You have to do it now." (I don't want to.) I give it a rest ... everyone else in the house starts to work towards cleaning, and I say again, "It's time to work on your homework." He screams, I SAID I DON'T WANT TO! (This is the first of many shows of restraint...if it had been ME that said that to MY mom? I am sure, without a shadow of a doubt, that I would have met her hand in a not so friendly manner.) I let it go a few more minutes and then suggest that since everyone else is picking up, he should put his clothes on hangars. (His clothes = a few shirts and 3 pairs of pants, not an entire winter wardrobe.) And at this point? The hell really breaks loose. Why I couldn't just say, "Ok, whatever" and let it be, I don't know.

Please, someone tell me, why is it fair that my 2 year old single handedly unloads the dishwasher and knows where everything goes? The things she can't reach, she puts on the cabinet until I get there. No, I have not asked her to do this, but if I start and walk away, she will finish it for me. Why is it fair that my 3 year old picks up her toys, the baby's toys, books, and other messes, as well as cleaning off the table after dinner? And yet, my 8 year old? If I ask him to do something, I am being mean, hateful, I don't love him, and then the fighting begins. He refuses, I insist, and round and round we go...where we'll stop, nobody knows.

Today, we had the scenarios above. I wanted him to put his clothes up or do his homework. I was willing to help either way, but he needed to do something to help out too. It is NOT fair that the girls do things around the house, but because he has an attitude he doesn't have to. Yes, I know, he has a disability ... disability smishability ... I don't care when it comes to this. He is perfectly capable of putting a few things on a hanger and putting them in the closet ... he just flat didn't want to! If he had to work to pay restitution for the things he's broken, lost, and the way that he has hurt people, he would not be putting a few things on hangers, he'd be using a toothbrush to scrub the baseboards, but yet he doesn't. Instead, a fight begins and he gets out of it ... again.

I thought, "The people I see using FML are upset because they couldn't get the movie they wanted at RedBox or because their date night got cancelled. I honestly have never seen parents of children with such severe special needs that we have to isolate our younger children while our older child has a rage saying FML. Why not? Surely I'm not the only one of us who has ever had the thought. I sure thought it, and frankly, I said it today. I said, "This is not fair! FML! Just F-M-L!!" Do you know how much I felt it today? How much I wanted to write to the people I've seen say it and tell them, "You have no freaking clue?!?" 

2 things stopped me...
1) I posted on FB a while back, "You will never understand my life until you walk a mile in my shoes. I am glad God is walking in mine with me." If God is walking with me, then why would I ever want to say FML? 
2) What difference would it back? I have no idea what else happens to make people feel this way. For all I know, their date night got cancelled because they have been fighting with their loved ones. I really hope not, though.

Dear Heavenly Father, You are the most gracious, loving God. I pray, God that you will help me through all of these difficult times with David. I know, God, that you have promised to love us unconditionally and never give us more than we can handle, but God, you really tested me today and I am afraid I have failed. Please, dear God, forgive me for the sins in my life and God, please continue to hold me close and remind me that no matter what happens in this life, you are bigger than all of it. Amen.

Memories of a very special lady

Today, I read this blog post. The author is one of those moms with special children that make me step back and say, "Wow!" She posts about her kids, about the ups and downs, and then? She reminds me that not only is she a mom to special children, but she is an individual too. She is a person who deserves to take care of herself, even if it is just a few minutes in the shower.  I have am Mommy to a special child, I am Mommy to 3 other amazing little beings, I am the wife to an awesome husband, I am a daughter, a friend, and you know what? Like Hartley, I am also an individual. I deserve a few minutes too! After reading that, I decided that I, too, would find just a few minutes of time for ME every day, starting today!

Tonight, for my ME time, I decided to make my 2nd batch of these most amazing cinnamon rolls. The time came to roll the dough and assemble the cinnamon rolls. I spread flour on the dining table, turned the dough out of the pot, and then thought about a very special person.   My heart began to yearn for more time with her. I began to feel as though I did not take full advantage of opportunities to get to know more about her. I only knew this amazing lady for about 9 years, but in that 9 years she became someone very special to me. I knew her to be one of the strongest, yet kindest and most sincere individuals I could have the pleasure of spending time with. I began to miss this lady in a way that I never thought I could, a heartbreaking way, a way that made me wish I had asked all of the questions I wondered about, but never asked.

Letha Herrington, Grandma, Memaw, GG. She is my husband's grandmother, she is one of the people for whom our 1st daughter is named. She was a Mama, a wife, a teacher, a grandmother, a great-grandmother, and a Christian. Those are all things I know about her, I know that she loved my husband in such a special way, in a way that gave them a bond that many of us wish we could have had with our grandmothers. I know that she loved all of her grandchildren that way. She liked to tickle feet (one of the things I loathe the most in this world, but I let her tickle mine), she loved to see her grandchildren and great grandchildren. She loved holidays, she loved spending time with family. She was proud of her sons and what they had accomplished, and she was proud of the children they had raised. I pray that she is proud of how Chad and I are raising her great grandchildren.

I never asked so many other things, though. I wondered if she ever stayed up late to make something special for her children. Did she like to cook? Did she like to bake? What was one thing that she would make for her sons and husband that would always make them smile? I wondered what sort of things she liked to do. What were the things that made her happy when the house was quiet? Did she like to clean? Did she like to sew, knit, crochet? 

As I rolled out and assembled those cinnamon rolls on the table that used to sit in her kitchen, I couldn't help but wonder if she had ever rolled out cinnamon rolls on the same table. Did she ever make cinnamon rolls and let her children play in the melted butter on top of the dough in the name of helping? (That's how we spread the butter on the first batch I made last weekend.) I wondered what kind of memories she, her husband, and sons shared at the same table where my family is now making memories.

Once I put the last cinnamon roll in the pan to be baked hot and fresh in the morning, I longed to have one more opportunity to spend with her. I wished that my younger children could have had the opportunity to know her. I wish that she could have tickled Spike's feet, I wish that she could see Pouty's impish little grin, and see how sweet Samoo is. I wish that she could see how smart Gmail is, how much he loves spending time with that part of our family. I wish that she could see what an amazing husband and Daddy her grandson is, and I wish that I could hug her and tell her, 

"Thank You from the bottom of my heart for what you have given to all of us who have had the opportunity to know and love you, Memaw. I miss you and would love to just spend one more day with you to ask you these questions, to get to know just a bit more about your life growing up and as a Mama to Charlie and Woody. You are an amazing inspiration to me and I hope that I can please God in the ways that I know you did on earth and the ways that I know you are continuing to please him as you spend your days in Heaven forever praising him. I love you!"

New app

Trying out this LJ app for posting. We shall see. :)

A cure for the grouchies

Sometimes, even the happiest person has a case of the grouchies with an unknown cause. Today, I had it. I wanted to sleep, I wanted my house to be in perfect condition (which never happens with 4 kids), I wanted my mouth to stop hurting (I had a tooth cut out on Monday), and I just plain wanted to belly up to the all you can eat buffet at Crystal Palace in Raleigh (with much thanks to my good friend Allison). Since Crystal Palace wasn't going to happen, I had to find something else to cure this illness.

Every night, I lay down with the girls until they are asleep. Yeah, I know it's a bad habit and I admit that we have created little monster princesses out of them by doing this. They may expect us to lay down with them for a long time to come, but I don't know anyone who went to college with Mommy in tow so they didn't have to sleep alone. I actually really look forward to this time with my girls because while they may fight going to sleep, we always end up falling asleep with me in one bed or the other, but holding the hands of the two most precious little girls that God could have ever blessed me with. What is more precious than falling asleep while holding the hands of two such amazing little beings? (Yes, for the record, more often than not, I fall asleep with them and Daddy has to come wake me up.)

With the serious case of the grouchies, we all headed to their room to bed. I was not in the mood for antics or playing, I just wanted them to go to sleep so I could have a few minutes of me time. As always, though, God had other, more magnificent plans for our time before we fell into a restful slumber.

Me: Pouty (finger in her nose to the 2nd knuckle) please stop picking your nose.
Pouty: But, me has a big booger in my nose.
Me: It'll be there tomorrow (she's still digging)
Spike: I already picked all my boogers today, wanna see?
Pouty: (finger still up to the 2nd knuckle) Ewwwwwwwwww, Wibby, dat's sooooo nasty, Wibby!!!! EWWWWWWWW

A couple seconds of silence while I try desperately to stifle the giggles and then? Pouty looked at me (finger still up her nose), grinned, and said, "Me just can't get it out dis time, Mommy." 

No more stifled giggles. She and I, laying on her bed in that dark room, looked at each other. She started to giggle, i started to giggle. We were able to keep it quiet for a few seconds, but then...suddenly...all three of us were in the midst of a serious giggling fit. A much needed giggling fit. Once we calmed down, we all held hands and dozed off.

Thank you, Lord, for my children!!

What are these two arms doing??

Anyone who knows Gmail knows, it is nearly impossible to get a hug and kiss from him. Not that he thinks he is too old, too cool, or that it's too gross. Just that with his sensory and other challenges, he is not a huggy, kissy type kid. The times that I can get him to hug me, I squeeze just a little tighter than I might otherwise. I try to sneak a kiss on his cheek which he will promptly wipe off. It's just the way it is.

Yesterday I was standing in the kitchen fixing the girls something to drink. I was mid-pour with the gallon pitcher of lemonade when I felt two arms reach around me. I looked down, honestly a bit confused, and realized ... HE IS HUGGING ME!!!! I squeezed him, thanked him profusely for the hug, and then wondered, "What does he want?" ;)  I asked him, "What did I do to deserve this?" He said, "I just felt like I needed to hug you." *heart melts*

Today, he got home from school and HUGGED me, and then a little later I asked him if he would give me a hug and not only did he hug me, he squeezed me tight and even blew me a kiss!!! 

His medicine changes (a much needed update will be posted soon, I promise) have been horrible, but if nothing else, he has come around and lets me hold him. He even likes sitting in my lap sometimes. The hugs, though? WOOHOOO!!!!! I never thought he would give me a hug without being begged and pleaded with.
When I had my wisdom teeth cut out in February 1999, I was being sedated. I remember the doctor putting the mask on my face and asking me what my favorite song is. I told him this was my favorite song. He asked me who my favorite cartoon character was and I told him, "Fred Flinstone." He asked what does Fred say and I replied, "Scooby dooby dooya". That's the last thing I remember until I woke up on my way to the car and begging for pain medicine. HA! 

Dentophobia - a fear of going to the dentist

I know there are people who are a little uneasy about going to the dentist. I know there are people who are terrified to the point of needing to be sedated and driven to the dentist. I think I fall somewhere closer to the second group. I could easily let myself become so overwhelmed with the fear of going that I have panic attacks and cancel my appointment. Or, maybe I have become that overwhelmed? I made my appointment for the dentist yesterday and I woke up several times after nightmares about snakes and other such things, each time finding it difficult to breathe, as well. I have to go alone since Chad has to stay home with the littles, so I hope to be able to hold it together.

My dentophobia (I love that word, it makes me feel much less like a baby lol) has kept me from the dentist for many years. The last time I remember going to the dentist was to have my wisdom teeth cut out in February 1999. Before that, I had my braces taken off and a filling in 1996. Other than my orthodontic visits before that, my last visit was for oral surgery in 1991. And that, my friends, is when the fear all began. The dentist's chair was never my favorite place to be, but that experience would leave even the most inept oral surgeon with his jaw on the floor and the strongest man with his toes curled. It was an experience that I will not tell you anything more than when all was said and done, I had more than 30 stitches in the roof of my mouth. I still feel the pain from that visit like it was yesterday when I think about it. 

So, tomorrow, I go back to the dentist for the first time in almost 12 years. I have a tooth that has hurt for a while and I finally decided to suck it up and go. I am terrified, I am horrified, I am...well...on the verge of hyperventilating just thinking about having to go. I can't believe I am driving myself, I'd much rather be sedated and have someone else drive me. Since that's not possible, I will suck it up, I will go. I will beg the dentist to do whatever needs to be done to this tooth while I'm there, honestly if he doesn't he may or may not ever see me again. I will also pray with all I have that he is a caring, compassionate, and kind dentist. And since I have to go alone, I will be singing The Cartoon Song in my head the whole time. Maybe it'll provide me with some pseudo-sedation.

Soft Clothing Give Away Sweepstakes

I have many friends with children who have SPD or similar issues. For those of you that do, we know that the beginning of the new school year can be very difficult. Sensory overload at its best. Maybe this great give away can help your little ones transition to the new school year more easily. An awesome give away worth $250!! Click below to enter! :)


Feeling secure

 

When a baby is upset, tired, or just doesn't feel good, Mama's arms can make him feel better. Mama can scoop him up, swaddle, cuddle, rock, and sing to him. While he might not calm right away, he can still have a sense of security. Mama is supposed to be able to make everything better. Unfortunately, we can't always do that.

Two weeks have passed since we last saw the pdoc. My boy has had many medicine tweaks during that two weeks and still is not really getting any relief. The tweaking of the medicine has taken him from pitiful, lengthy crying spells to the heights of euphoria. Between the two extremes, he has been angry, hostile, aggressive; downright mean. There have been a few times that he has been nice, helpful, and compliant, but it has been an exception to the rule. Frankly, my baby has been unhappy, uncomfortable, and generally just miserable. I can no longer pick him up, cuddle him, rock, and sing him to sleep. Oh, how I wish I could. What I wouldn't give to be able to hold my baby the way I did 8 years ago when he cried, what I wouldn't give to be able to take all of the hurt and confusion he lives with from him. I would give my own life for my baby to live the life a "normal" 8 year old lives, free of the torture of his illness.

We went back to his pdoc today. I gave her a quick run down of the last two weeks, even though I have been on the phone with her nearly every other day. She was also lucky enough to get a taste of our lives for herself today. She saw the constant antagonizing, both physical and verbal. She witnessed just a small part of what our family has dealt with for so long and agreed that we need stabilization as soon as possible. She suggested we increase the dose of the new medication by almost double, but also gave us a prescription for something else. She said if the increased dosing does not give him some stabilization, we are to fill the other prescription and start that. Hopefully, we will reach some level of stabilization in the next two week period and be able to start some other testing then. That testing will be to hopefully help us find some other, less powerful medications for long term use. This is, after all, our goal for him, that with therapy and medication he would be able to manage his own moods and behaviors.

As for the speech issue that precipitated this change in medications, there has been no improvement. Therefore, he will be having an MRI (date/time TBD) with anesthesia. Due to the amount of time the MRI takes and his anxiety and inability to be still, he will have to have the anesthesia. They also have the orders to use contrast at the radiologist's discretion should something show up in the initial round of pictures. At the last appointment, she had a difficult time getting one leg to respond to the reflex tests, but today she had was unable to produce reflexes with either leg or one arm. We suspect this was due to him tensing his muscles, but there is no way to tell if this is really the case since he denied it.

Today, specifically, he was full of all of those actions and emotions that rule our lives. He was antagonistic and obnoxious. He did whatever he could to get a rise out of the girls and me. He showed the pdoc his true colors and while I was thankful she saw it, I was embarrassed and frustrated. We left there and went to a play date where he was on his absolute best behavior. He was compliant, kind, and funny. I enjoyed the time there with him (and my friend), but then we left. The minute we got in the car his behavior went right back to what it had been most of the morning. We went to the pediatrician's office for an appointment for one of the girls and it was absolute torture. He was nasty to the girls in the waiting room, hollered and showed out in the exam room. I know the nurses were wishing the doctor would get in there, see us, and get us out! It was so embarrassing. When we got in the car and headed home he calmed down and we had a rather peaceful ride home. He took his medicine shortly after we got home and so far has been pretty easy to get along with since we got home. I pray that the night continues this way. I know the day was stimulation overload for him. He is used to being at home where he has an outlet if he is overstimulated or grouchy, and feeling the need to let it out. He doesn't have that in public and that is definitely an area where we need to improve. I know this, I am working on this to help him, but it doesn't make it any less frustrating or keep me from wanting to scream any quieter.

And so, we move forward for the next two weeks. We continue praying that our baby boy is able to find stabilization, relief, and happiness.

(Side note: Last time, several of you posted very supportive messages, but I was unable to determine who they were from. If you don't mind, please sign your comments with your screen name, location, or some other clue as to who you are. Thank you! :) )

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