3 month update (Apert Syndrome)

It's amazing how much you learn in such a short period of time! I look back at my first post of the birth of my first grandchild and how scared, shocked and sad we initially were. I was ignorant of much of what Apert Syndrome involved and wasn't sure where to turn. When I looked deeper, I found SO MANY other knowledgeable, caring, and empathetic people who were parents of, cared for someone with or were themselves people who had Apert Syndrome. While I still occasionally feel sad, I look to the other incredibly nice people who've already walked down the same road we've been led down. So many others have incredibly useful and interesting blogs and I love that Facebook can bring so many people from around the world together who have common interests and concerns. I have also learned that Olivia is very blessed to have few issues compared to many other kiddos in the same boat who are so much more developmentally and physically different/delayed. She is very blessed! She's now tracking as people walk around her and is starting to 'coo' and communicate. I love her personality and she's such a doll! She's now up to 8.8 pounds. Who knew that she'd get so much use out of newborn sized diapers!



Here's where we stand now:

Olivia is almost 3 months old! We've met with a craniofacial surgeon who has a team who will treat Olivia when the time comes. He discussed her condition and gave us a timeline of probably surgeries in the upcoming months/years. I had read a lot of information beforehand so it wasn't a total surprise but, for me, it was reassuring. For my daughter, she didn't really think about it in advance and was a little disappointed. I think she hoped that he'd say her daughter was a mild case and would have some miracle cure or that'd she have fewer surgeries. I loved his philosophy of fewer surgeries and to initially tackle her gastric issues and do the sleep study.

She doesn't have the cleft pallet as we were initially told. Her pallet is extremely shallow but she does have a double uvula. He discussed her bone structure of her head and how it's fused. She'll have two or three cranio vault surgeries as needed to allow her brain to grow in her skull as the bones are fused and it can't stretch and expand as a child's brain grows. Her midface bones are fused too and the floor of her nose is high which makes it difficult for her to breathe. She uses her abdominal muscles to breathe instead of her nose which explains so much of her gastric and reflux issues. Those muscles work harder to breathe and sometimes forces food etc to come up. Her reflux meds help a lot but she still has a lot of pain each day. Because she has issues breathing, she'll need a sleep study so determine whether she's getting enough oxygen at night. Many developmental delays occur when there's not enough oxygen so we're checking that out now (should get the date for her study this week.) Also, her windpipe is in the shape of an 'o' as opposed to typical kiddos whose windpipes are in the shape of a 'c.'

About 30% of Apert kiddos develop a chiari malformation where the brain kinda slides into the spinal column. That sounded scary when the doctor mentioned it especially when we already know of some type of abnormality in her cerebellum in that area. But he also added that it might not have to be treated even if she got it (fingers are crossed.) She won't need an MRI until later and even if she's missing certain areas in her brain, the brain is powerful and can often overcome some issues. That is something to put off until much later.

Her feet are probably clubbed so we are also getting a referral to a pediatric orthopedic to check on that.

The surgery timeline is as follows (subject to change, of course) At 6 months, he'll check her skull/growth and determine whether some of the initial surgeries might need to be switched (ex: head first then fingers/toes.)

9 months - fingers/toes (separating them), probably ear tubes as well
12 months - fingers/toes (separating the ones not separated during the first surgery)
15 months - cranio vault surgery (head)
Between 5 and 9 years - another cranio vault surgery
Between 7 and 9 years - midface (where you pull the midface bones forward which helps with eyes, nose, breathing etc.) This one will require her to wear a halo on her head to pull them forward for a couple of months and it also reduces the look of an 'apert' kiddo.
older - hand surgery to put bends in fingers (her fingers are fused straight and even when separated, they'll still be straight. This surgery makes them more useful and they'll look like a typical hand looks in a resting position.)
after teenager - another cranio vault surgery and possibly jaw surgery (since many jaws might not match well)

The surgeon wants fewer operations so if something needs to be done, it's preferable to get the team together to do more than one thing at a time to reduce the number of operations/going under and is also less expensive.

Some things we didn't know:

Her hearing will be a little diminished (eustachian tubes don't open as easily)
Her walking may be a little slower (the tibia is attached to the ankle a little on the inside)
Her eyes are sometimes a little wonky because she's missing an eye muscle (has 5 out of 6)
Her watery eyes are just fine (they are lubricating extra because her eyes will be bulgy until she has her midface expansion.)
Her chances of having ADHD are increased even more (probably moreso since we already have it in our family.)
Teeth take a long time coming in and also a long time falling out (the bone is so dense.)
She'll get more sleep apnea as she gets older.

All in all, it's amazing how vastly different all this is a few months later. I don't feel as alone anymore after meeting so many friends and acquaintances online and this journey is not as frightening as I initially thought when there is that common bond of sharing Apert Syndrome.

This is a pic I took at one of Olivia's appointment's last week with her mom (my daughter) holding her.

Younger Daughter's 22nd Birthday

How time flies! To think...my younger daughter is now 22 years old!!!! We celebrated it at my house this evening! I bought her a purse (luckily, my older daughter went shopping with me as the one I wanted to buy her wouldn't have been the best choice, lol!) It's not often I catch her smiling for a camera so when she did, I took lots of pictures! I'm incredibly proud and happy to have her as a daughter and to be a part of her life! I love her bunches!



My mom used to make Boston Cream Cakes for me (my favorite) so I made one for her today as well. However, I made it a little more exciting (thank you Pinterest.) Instead of the plain yellow cake, I added color to make it lively and bright, just like she is!






My two daughters!

Crayon Creations

I love Valentine's Day! This year, for my kiddo's treat bag to each of his friends at school, I wanted to make a crayon thingie. I've been saving up crayons for many years (broken ones from home, those received at restaurants to keep kids occupied, some found along long walks.) I wanted to make ones that were heart shaped but all I had was one for gingerbread looking figures so that's what we used. Here's my process:

First, I sorted the crayons into Crayola crayons and the offbrand ones. I wasn't sure whether it made a difference but I didn't want to mix them, just in case. I then took the paper off of each of them. This took the longest time.


I did a 'test' by melting Crayola crayon pieces next to generic crayon pices just to see if there were a difference. There was! I decided to only use Crayola crayons for this project. The Crayola one is on the left and the generic one is on the right.


Next, I cut my Crayola crayons into tiny pieces.


Here's one pile I made.


I then put all the pieces into the molds.


I then baked them at 230 degrees for 15 minutes.


Here's a closer look at them. They are dried and cooled but look wet because of the light/camera flash.


They popped right up from the mold and were a great turn-out!

Alzheimers at 54!

I have a good friend who was just diagnosed with advanced stage Alzheimers! She is 54. Yes, I definitely knew...so it wasn't surprising to hear the results of her skull/brain catscan confirming all this. I've had that feeling for a while. Yet, when you have confirmation, it makes it all much more real. She helped take care of her elderly mom when her mom started having some dementia (before cancer was found shortly before her death.) My friend's sense of humor and funny blunt quips were the first things that I noticed that I liked about her. She is the sister of a very good friend of mine. We've become close friends in the last several years. I'd invite her to my short jaunts out of town and she loved going with my boys and I to the beach and waterparks. When I got a restaurant or movie giftcard, I'd invite her to go eat or watch a movie with me (it was always a good excuse to get her out of the house)and we like the same kind of movies. This still happens and I'm sure we will continue doing this. Of course, in the last couple of years, I've noticed that she's been less sociable and forgetful. She has really bad anxiety and when she becomes really tense, she'll tend to go blank so it was initially difficult to determine what was happening with her. But when she couldn't remember her kid's names (or birthdates,) it was getting clearer. When I took her to get her license renewed last year, she got so confused reading the lines that they couldn't renew it. The list goes on and on. She had been separated when I met her too but since then, her hubby moved back in and they've reconciled. Blessing in disguise. Just like my MIL, I'm going to hate yet watching someone else I really care about slowly lose all her memories. I've said it before and I'll say it again...Alzheimer Sydrome sucks! I think it's even more cruel that someone who is much younger than the typical elderly person be stricken with this absolutely slow and horrible death sentence of sorts.

Dressing up!

I went to my first play at age 17 with my Great Aunt Roey. I don't even remember what it was but it was awesome! Throughout the years, I've seen one here or there. I was able to see a Broadway play years ago (Miss Saigon) with my friend Janet and it was awesome! When my friend Betty's husband died about 6 years ago, she tried to do activities to keep her happy (and that didn't require food like eating out.) She invited me to go to a play with her and I went. I then attended many with her over the next several years.

I didn't really think about inviting my kiddos. That is, until last fall, when my second grader insisted I buy tickets to the school middle-school play, Fiddler on the Roof. I did and saw the sparkle in his eyes as he loved every second of it! Of course, I started searching local communities for upcoming plays and we went to see one called Treasure Island. Of course, when you have a play that had sword fighting and guns going off, I think every little boy would be in heaven. They were nice enough to take him seriously when he started asking questions during intermission and the lady actually went out and got her hubby (who was an actor in the play) to answer some questions (and let him feel the sword.)

Last night, we attended another school play and I brought both my boys. The four year old did well (better than expected.) My second grader had been looking for a reason to wear his nice suit (that Santa brought him for Christmas.) He wore it to church last Sunday when he attended with his sister (and her family.) So last night, he was able to wear it in public a second time AND see a play, which, at times, he laughed really hard! As soon as we walked out, he started asking me what my favorite part of it was and even my younger kiddo got in on the conversation. My friend Devyn is incredibly thoughtful to pass on some clothes from her boys. My younger son is wearing some from her boys. Let me tell ya, my bigger boy practically wears them out so there are few to pass on to my younger one so I am extremely thankful for her generosity. Overall, we all dressed up and enjoying going out. It was a nice evening.

Of course, I had to take pictures to catch all the handsomeness!

Tasty, Funny and Sweet: Pictures

Tasty
One of my favorite smells in the world: ground beef being cooked with onions and green peppers! I used to love coming home from school and watching my mom cook dinner and to smell the aroma of this combination! I found something I can make that is kinda good. My cooking skills have a lot to be desired but I went to a friend's house on New Years Day and she made a black eyed pea casserole which was delicious. It has cheese, rice, rotel tomatoes, ground beef, lots of tasty things...even the black eyed peas I don't particularly care for but you can't taste them much. Each New Years Day, she does what her late mother used to do: make black eyed peas, cabbage rolls and invite all her friends over to eat. If I'm in town, I go by there, eat a little and enjoy the great company. She used to be my supervisor when I worked (before resigning to have my 'lil ones) and I look forward to visiting with Katie each year if I'm in town on that holiday. I asked for the recipe and made it at home. Since my family loved it, I decided to make it for a friend (she's out of town a lot going back and forth for chemo.) As it turns out, they loved it too so and asked for the recipe as well...so I passed it on.



Funny
I was walking through the kitchen of my daughter's boyfriend's house (the daughter who had a baby recently.) I glanced at the refrigerator and noticed her shopping list. I just love smartphones with cameras! LOL!




Sweet
One morning, my older son went to wake up his younger brother. He came back into the kitchen and told me to hurry - I had to see something, which I did! I saw my preschooler's "birdie" sleeping soundly on his ear. This little birdie is actually a pencil topper but he loves carrying it around because it's small and squishy. I thought it was definitely a kodak moment. Each night, he sleeps with his monkey, a velveteen rabbit sort of stuffed animal and, at times, something else. Sometimes, though, 'birdie' falls down from his bed in the dark and he has a difficult time finding him (and calls for assistance, lol!) Luckily, that doesn't happen too often. I still smile as I glance at the picture. (And, for the record, it was sleeping 'on' the ear and never goes 'in' it...just sayin.')

8th Birthday Party

My second grader turned 8 in November. We planned a birthday party but it had to be rescheduled. Since hubby works offshore and is gone half the time and Christmas interefered with planning, his party didn't take place until this weekend! He was really excited to have a skating party. It was two hours of great skating, lots of friends and fun for him!!! Hubby skated as did little brother! I handed out tickets as his friends came, watched out for falls, took pictures, helped lace up skates and passed out pizza. On the way out, I took this picture! My younger daughter was on the way out the door (so you can barely see her jacket as she didn't want to be in the picture.) Hubby is holding the same skates he had some thirty years ago when I met him.




My kiddo helped pick out his cake too...He knew exactly what he wanted. He explained to the bakery lady what he wanted it to look like right down to the color of the trim and explaning that he wanted the plastic trees to make it look like a forest. He wanted a hunting scene. I went out and got the decorations for the top (hunters with crossbows and rifles, flying and sitting ducks, hunting dogs, lots of male and female deer, a rabbit and an ATV.) After the fact, I should have taken the picture from a lower stance as it's a little hard to see from that level. He was extremely happy though and that's all that counts. We only have a party every 4 or 5 years or so (the kind in which you invite friends) so we wanted to make it memorable. It was!

Baby Olivia

I love this grandmother stuff! I can go and help out and then go home at night! I have time to regenerize and not have to worry about when I can take the next shower. Of course, being an experienced mom, I've learned some things to do to make my time more efficient that my daughter is just now learning. I'm trying to do those things people mention you should do...like not offer advice unwarranted (this one is hard for me, lol!) I find myself doing things for her without thinking such as packing items on the way to a doctor office and then she is looking for it (I should have let her do it.) She's becoming a better mom each day. I love that her sister (my younger daughter,) her boyfriend's family, my immediate and extended family, and her close friends all come together to support her and help her get from one day to the next. Nevertheless, Olivia is 3, almost 4 weeks now and all is well...today.

The last few weeks...

....have been a blur.

Right before Christmas, we drove to Arkansas and spent a few nights at White Rock Mountain State Park. We had gone there a couple years ago and when DH suggested we go, I didn't hesitate (I usually make all the trip or travel plans and was ecstatic!)

It was COLD! There was a small heater in the bathroom (there was electricity) but the rest of the cabin was warmed by fireplace. We have never had one and it was very fun putting the logs on, stoking the fire and just smelling the different smells from it all. When we woke up and were too cold to get out of bed, my second grader offered to help out! I felt like Tom Sawyer when he asked to help...sure, go ahead and get the ashes out, ok...if you insist, you can go outside on the porch and get the logs....oh, alright, go ahead and light it. We just stayed cuddled up until it was warm in there! And the weather outside was even colder! There wasn't any snow but it was extremely windy so it felt much colder than it was!




Of course, when we drove back home (after a 12 hour drive and crawled into bed,) we were awakened by my older daughter when she called after her water had broken. And, we were blessed with our first granddaughter, Olivia, who is just over 2 weeks now. They went to an appt with the geneticist yesterday (a couple hours away) and will go back there tomorrow to see the opthamologist and neurologist (MRI.) So many appointments, so much to do... They spent the night away to be able to get to the early 8am appointment so here is Olivia taking a nap during her first night away from home in a hotel with her mom and dad (and aunt, my younger daughter.) It's interesting to see how different people cope in stressful situations. It seems like we inadvertedly take turns being strong, then subside a little under all the pressure while allowing someone else to take the reins for a while...yet all of us try to be positive, loving and courageous. We've found some incredibly supportive online friends from FB groups, blogs and networking who also have someone they love in their lives who have Apert Syndrome. My daughter doesn't feel as alone as she initially did. However, she did say last night that she feels like she's sinking. She is stronger than she thinks she is. She just hasn't found her inner strength and purpose yet. It'll come...it may take some time though. I'm there to support her though. I gave her a book, Uncommon Beauty ,for her to read as well.


In between those events, I took my older son on a cub scout camping trip. It was a nice break and he enjoyed playing with his friends. Of course, it would have been SO much more fun had the weather cooperated. It rained.....all.day.long! Brrrr! That didn't stop the kiddos who found fun stuff to do. The parents seemed to be the ones who whined the most. We had taken our bikes to ride along some of the 37 miles of hiking trails in that state park but we were limited to the road in front of our campsites instead. But all in all, we had a great time!

My grandbaby has Apert Syndrome.

My daughter had her baby girl on Christmas Eve.
She has Apert Syndrome.
Trying to cope.

I had no idea how difficult it was to watch my kiddo go through labor but I managed to be there the whole time and help her as much as I could. My younger daughter turned out to be a steady rock, a labor coach and she was awesome. My older daughter was strong, focused, and it was a great day...when the 'lil one finally started to make her appearance, the cord wrapped around her neck slowed it down a bit but then they got her breathing. We noticed immediately something was off. Hearing words like cleft pallet and webbed fingers as we're trying to peer into the little isolette as they clean her off made it even more scary. Her large forehead and big eyes were the biggest sign that she was not what we expected. The neonatologist confirmed that she had Apert Syndrome. So many other differences...

Apert Syndrome is a genetic disorder that causes abnormal development of the skull. Babies with Apert syndrome are born with a distorted shape of the head and face. Many children with Apert syndrome also have other birth defects. Apert syndrome has no cure, but surgery can help correct some of the problems that result.

It's difficult to adjust to a new mindset. I have yet to see her closely or hold her as she is in NICU (should go home next week.) I took a picture but when I see it, I often turn away. Mourning the loss of hopes/dreams for her and her future is...unknown. While she cleft pallet is not too deep and the fingers/toes may be fixed, it's clear her brain is quite different than the average one. I know I'll have new dreams and hopes for her and will love her very much no matter what.

My daughter is sinking...I don't know how to help her or what to say. I am trying to be there for her. She's pumping now and sending her milk to the nursery. I find myself crying a lot (not around her, of course.) I keep looking online for support groups or anything to help us with how we're feeling or what to expect in the future...not very successful.

My daughter says that she hears my younger daughter say that her baby is beautiful and perfect and loves the way she kicks her legs (as we try to peer through the window blinds into the nursery.) My daugher said she wants to see her baby the way my younger daughter sees her but knows it'll take some time to get there.

Blessings Via the Christmas Tree

A lot has happened in the last couple weeks both within the nation as well as at home. Two weeks ago, I received a call from a bystander who was helping my younger daughter by calling me. A woman driving by named Sarah stopped stayed with her until the ambulance arrived. The lady had just gotten off of work as a nurse at the hospital. My daughter had been driving home from one of her jobs late at night and someone pulled out in front of her (they got a ticket for failing to yeild and luckily they had insurance.) Sadly, my daughter wasn't wearing a seat belt therefore her injuries were worse than they could have been. She still has headaches and limps (can't wear a shoe yet due to the bruising and swelling.) Her car was totalled. She lost a lot of hair in the front near her forehead because of the windshield. It could have been so much worse. I am grateful that she is alive and in one piece. I believe someone was looking out for her.




This is what her car looked like afterwards. Of course, I made her take a picture next to it.



When I see ornaments like this, I automatically think of my sweet girl with whom I am blessed to be a mom. She has developed into a mature young adult who takes care of her responsibilities yet still is caring as ever. As we sat in the ER all night, she was medicated and talked a lot to me, not just the one word answers but actual conversation. It was so awesome. She has continued this with me and I absolutely adore these talks. I'm not taking them for granted but am wishing they continue like this forever. This is probably the closest we've become in many years.



Of course, she and the rest of my kiddos wouldn't be here if it weren't for my hubby who has been so kind and generous over the years. At our first Christmas, he bought this for our tree and everytime I see it, I think of him (and the only ornament he ever bought for it, lol!)



My older daughter, who will bringing into the world a daughter next month, has blossommed into a lovely young woman and I enjoy our new relationship (mom to mom.) She's so different from when she was little, yet the same. I love that I can talk to her and exchange stories relevant to parenting now and we have more common ground. This is my third year using an artificial Christmas tree since my allergies couldn't handle that absolutely incredible great balsam aroma of the fir trees anymore. I am so thankful that this tree was given to us by my older daughter's boyfriend (who had another tree or two) and we really love it!



My MIL, the one who's in the ALF with Alzheimers, used to give us an ornament each year. I think they came in Folgers coffee cans. We have many on our tree and each one reminds me of the love and strength throughout the years from both my FIL and MIL. I decorated her room the other day and brought in some things she used to love. My SIL (who lives at the bay) bought her a CD of her favorite Christmas songs (by the Morman Tabernacle Choir) and some soft socks/gloves. I also put out some chocolate candy which she used to love as well. Perhaps somewhere down in there, she's still there and might see our appreciation and care for her. Yes, that one says 1984 (the year DH and I were married.)



My boys have reinvigorated me and made my life more enjoyable. This ornament was from our first Christmas with my older son when he was a month old. My friend Anita gave it to me (she loves Hallmark ornaments.) Seems like just yesterday. As I write this post, he's in the other room pushing a bear who is singing "Have Yourself a Merry Little Christmas" as it moves. He enjoys the song and says the bear is really soft...pushing it over and over. That's what childhood is for!



And of course, my youngest son, who wants to be just as big as his brother. He's into Disney Junior now and loves pirates! I returned home after finding a great parking spot at the grocery store yesterday because he begged to go get his elf hat to wear while we were shopping so that people would think he were an elf. I figure...why not? I had the time and you're only four years old once! He loves asking questions and presenting dilemnas like, "What would happen if..."



My parents, of course, are part of me and my soul. I grabbed this raccoon ornament the Christmas after my mom died when I helped my Dad and brothers take their tree down. I was with her when she bought it...and it just called my name. I miss her...especially during the holiday season. The last ornament is the one I made when I was a little girl, still hanging on...getting older...but still loving Christmas...and life!

Friends, CS Camping, Baby Showers!

I've been busy. Very busy. And in my hustle and bustle, I've not been cleaning or being organized as I should be (meaning, wasting time trying to find stuff.)

While I should have been packing for a cub scout camping trip, I chose to go visit my friend who was in from out of town! She doesn't make it down to TX very often so when she does, I try to spend lots of time visiting with her and her family. This time, her mom (and her family) invited us to share an early Thanksgiving with them (and their friends.) It was wonderful! I loved all the food (and her Filipino pancit!) It was nice that the four of us got together! We spent many hours together in high school and now we're all moms. It was awesome that we were able to get together and hang out!



I'm not normally an outgoing person and prefer to be 'behind the scenes.' Yet, I managed to volunteer to be an 'outdoor coordinator' for my kiddo's local cub scout troop. While it's right up my alley, it should be easy. I'm not very creative and give lots of kudos for those who take care of each 'den' of boys (that's a LOT of work!) Since I love the outdoor stuff, overpack for camping trips, and had some extra time, I said 'sure.' Of course, afterwards, my inner 'unsure' self started creeping through. As I stood in the grocery store buying all the supplies and food for the evening meals for the campout (roughly about 50 people a night,) I didn't realize how much I was overthinking. About two hours passed! I made it through the first one and now, it wasn't as bad as I had thought it was (in my head, everything is worse or scarier.) It turned out to be a success! The only thing I could have done differently was search for my camera a little faster (I couldn't find it.) I did manage to get a couple pictures from my phone though.



And it seemed my kiddo loved the campfire the most! He certainly was the dirtiest! The kids loved fishing off a dock.



Then....my younger daughter and I held a baby shower for my older daughter! She was very happy and it turned out very well! My older son took charge of the punch bowl and my younger daughter was in charge of the games! We had many people help to create a great day for her! She's getting used to having a baby and the gifts she got at her shower were her firsts. She's changed a lot in the last six months. She's more patient, has learned how to talk to kids and is more maternal. My younger daughter was a huge help in all this! She was creative, a great motivator and came through in the end! I'm so proud of them both!

Sunday Dinner

I was invited by my older daughter (and her boyfriend) to their house yesterday to hang out and eat. They cooked lots of stuff and my kiddos and I had a wonderful dinner! I went to a book club meeting earlier (for a couple of hours) while my little boys hung out at her house and helped with her chores (which reminded me of the Tom Sawyer story of wanting to help paint the fence, lol.) When I returned from my meeting, my other daughter was also there. It was awesome that we were all there hanging out and enjoying each other's company. My younger daughter hasn't been around a lot lately since she moved out and it was nice to visit with her. In addition, my older daughter, who has matured a lot in the last several months, has realized how to talk to her little brothers in a responsible way (and they love spending time with her.)

It was something I really enjoyed! Besides not cooking, I absolutely loved these adult conversations with my adult daughters while letting my little ones enjoy playing and seeing everyone get along well! Another thing I enjoyed yesterday was the fact that they wanted to take a couple pictures. Normally, my younger daughter hides from the camera but there were many taken yesterday. Here's a good one of my kiddos.

Schizophrenia and Family

My middle brother has Schizophrenia. When did he get it? Who knows? We observed his uniqueness in childhood, even during his teenage years but it really reared it's ugly head as he entered adulthood. I think his use of illegal drugs didn't help the situation. It's difficult dealing with him and his dual diagnosis, so to speak. You always have to wonder, which 'brother' will it be today? The drunk one, the high one, the crazy one?? Yes, he's been locked up a few times in mental facilities to deal with his bizarreness throughout the years. That's just part of life...

Recently, my brother's wife (and her kids) left him several months ago. He's had no real issues for the last few years or so. When things get rough, he starts to stress and then everything seems to break down. A couple months ago, his car died and it sits in his driveway. He can't really afford to live where he is (yes, I'm his landlord, for the time being) and his utilities will start to be turned off in the next month or so as he's already spent his money he receives each month ahead of time (thank you stupid tv ads for paycheck loans.) It's just a matter of time that he will be homeless too.

I knew he gives us grief. Sometimes I'm not sure whether he's just being inconsiderate when he makes certain statements. Or where his thoughts come from. Being erratic, child-like and unique has always been his personality. Sometimes it just wears on you. His neighbors have started calling to report strange behavior. Laying in the road, putting gifts (odd things he thought they could use) in their yard, walking around in a dress and hat, wearing a costume and riding a broom on the road....I had no idea he was harassing them (as he does us.) I urged them to call the police if he were endangering himself or anyone else. I've explained his current circumstances too. He knows he is not thinking clearly at times but there are so many incidents where he intentionally tries to 'act' crazy to get a reaction. He has learned that if he is annoying enough, he will get what he wants from people because they want him to go away. Definitely a fine line. My older brother and I have played the "it's your turn" with him for years and eventually, we feel like we need a break. It'd be wonderful if there were a place for people like him. If he is taken care of (like a friend or companion,) everything works well. He needs attention and someone to care about. When he is alone or having to care for himself, he starts unraveling.

This morning, I went to the courthouse to try to file an emergency commitment warrant. It's not quite serious enough because I need to observe more of him being a danger to himself or others. I understand that. There needs to be that important part of the process as everyone needs to be able to express themselves. I just know, based on his past, what will happen and I was trying to head it off. He's not taking his medication because he used drugs and, where he goes, they won't treat him under the influence. So he has an appointment with another doctor (a month away.) He started to commit himself a couple of times but never follows through the whole thing.

Also, today, he made a mistake. He brought a friend of his over (to pick up something from my house.) She is the mother of an ex-friend of his who has been nice to him over the years. Comparing stories, we realize that we've been bringing him all over the place (that he didn't necessarily 'need' to go) and have both been feeding him. I bought him groceries ($86) on Monday and on Wednesday, she spent $60 more. I'll admit, I bought him toilet paper and all food he can prepare himself without cooking (mostly healthy fruits, veggies, bread, sandwich stuff.) She bought him paper bowls, plates and cat food among other stuff. Apparently, she's been his chauffeur a lot more than I have been. It's a lot of gas and time to 'help' him but then to realize that we've been doing similar things (his stories weren't matching up and he's been lying to us both about a lot of things.) He took out the last bit of money he had from the bank today (no particular reason necessary but I think it was to buy weed or crack.) As we talked, I noticed him walking around probably thinking, Sh%t! On Sunday, I saw that he had absolutely NOTHING in his house to eat. I helped. On that day, he didn't know what else to do (he had called earlier asking to eat with us which would have meant me going over, picking him up and bringing him over and then returning him which would have been a couple hours at least and we were getting ready to sit down to eat...nope, not going to happen) so he called 911 saying he felt like he was going to have a siezure. They took him to the hospital. I went by there and was amazed at the condition there. He was living as if he were a squatter (most of his personal belongings were gone) and there was cardboard on the floor where he was eating (an empty chili can with a spoon in it.)

When I get up in the mornings to take my kids to school, I always look around to see if he is in the yard. He has come over while we were sleeping and 'helped out.' I don't need an old rusted battery and a huge armchair that was in the neighbor's garbage taken up to my kid's treefort! It's not nice to sleep in the kid's outdoor tent without asking! Or keeping extra clothes in my outside shed! Who does these kinds of things?!?

I don't know what'll happen, I just wish he acted like the 36 year old man that he is. He has some nice qualities, don't get me wrong. He ALWAYS remembers each of our birthdays. He is thoughtful (even though we may not agree on the definition) and is a hard worker (was a waiter for a local cafeteria for years.) It's just that when he goes down, he's gone for a while....

Of course, as he left today with his friend, he was mad. The usual explitives or comments are a normality. Luckily, my kids weren't around to witness any of that. They think the world of him. I wish there were a magic pill to make him (and others like him) better in an instant.

I just wanted to vent...I feel better.

Skating: The Past and the Future

I used to go roller skating when I was younger...every weekend...it was my only thing I did for fun! I loved going alone to meet a friend or with a friend every Friday or Saturday night for weeks on end.

When I was 15, I saw this really cool guy skating! He was handsome, blonde, tall, and did jumps, turns and was so smoothe on his skates. I watched him all night. He had a friend with him (a skinny dude with brown curly hair.) Six months later, I saw the guy's friend again there (alone.) I kept an eye on him. He wasn't as good as a skater as the guy I initially watched but he was really great on skates. At the end of the session, I noticed the guy asking a girl to skate with him (couple skating.) She said no. Then, he turned to me and asked me...I said yes.

One thing led to another and we started dating. We became engaged and got married the month after I turned 18. A year later, our first kiddo was born. When she was about four, we bought her first pair of skates (which has also gone through her sister, her nephew, her brother and now, her youngest brother, even though they're still a little big.)

It's been over thirty years since that first meeting and just last week, we took our youngest roller skating for the first time. He has been invited to a skating birthday party this month and I wanted him to practice a little beforehand. While we were there, we scheduled a birthday party for my older son at the same place. (I don't give him birthday parties every year where he invites his friends...this is his second and after a few years of begging, I finally gave in, lol!)

Luckily, they have these things you can hold on to so that those who are just beginning can be more stable and fall fewer times. My kiddo had a great time. My older son never wanted to leave and was like a machine going around and around! Of course, we were tired after an hour or two (in a four hour session.) We left after the third hour, btw.

So, here we are again...isn't it interesting how history repeats itself, in a good way. I'm glad I said ....yes.