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.

The Beach, Shark Teeth and Reading in Bed

My friend's mom died today...cancer...an easy peaceful death. She had a good life. Yet, my mother-in-law, who is much older, still lingers, hanging on with the horrid Alzheimers that takes away all dignity and life's memories. So.....rather than dwell on loss and regret, I take my boys to the beach. We packed the car full of beach toys and snacks. Along the way, I practice this week's spelling word list with my kiddo. I figure that we could kill two birds with one stone, so to speak.

The boys played in the sand, let the waves wash over them and looked for shells. I started a new book and read while keeping an eye on the kiddos. It was a lovely few hours listening to the wind, watching the waves and letting the kiddos get tired!

We noticed a bunch of little dead fish and other fishheads that had floated to the beach. One was a little shark head and, of course, my second-grader made a beeline to it to check it out. Of course we looked it over and examined the rows of teeth!

The boys had a wonderful time and got along really well together. Because we were so tired, we got home, took our showers/baths, ate a little and went to bed (well, the kids did, I stayed up and watched mindless tv.) The car is still packed with beach stuff and I will unpack tomorrow.



















I checked on my 'lil one about an hour after the kiddos had gone to bed. Apparently, he got a surge of energy before passing out. I can see that he 'read' lots of books and then arranged them in rows on the floor. He has always loved books and looking at them, even as a baby. I can always tell which ones he's looked at (there's a huge bookshelf on the other side of the room with many shelves of books so there is an ample supply in there. Since he's the fourth kid, the accumulated books over the years end up on the shelves in his room. He's going to be really tired tomorrow!

Only boys left -

My youngest daughter, who is 21, moved out of our home a few weeks ago into her own apartment. She had been dreaming about it for a long time and, truth be told, so had we! I had visions of how to repaint and redecorate her room! We at one time thought about moving one of our sons into her bedroom (as it's a large sized one.) Right now, our younger son is in a room that size (along with most of their toys) and our older son has a very small room. But...as the idea progressed into a plan and then we were told of the date she'd leave, we thought we'd leave everything ...as is. We're just going to leave it empty a little while...you never know.

I miss her. I don't miss certain things about her behavior or attitude but I bet most moms feel that way about each of their kiddos. I miss her presence. It was nice knowing that someone else was around in case I needed to leave in the middle of the night (very rare) or to sign for a package (around holiday season.) She is the kind of kid who is very private, doesn't ask for much and wants to be independent (to a point.) She is great at telling you how it is (without being politically correct.) There were times I wish I were as brave so that I could say what I was feeling instead of what I thought I 'should' say (to whomever.) I love that she will discover how much it costs to buy dishwashing or washing detergent, how much difference it makes to reduce (or raise) the temperature in your place, or how difficult it is to shop/cook/eat for one. I long to have the relationship with her where I'm not being the nagging mom but rather where we can communicate as adults who like and appreciate each other.

I searched in my latest pictures from my camera for a recent picture of her. She tends to shy away from the camera or refuse to be photographed. But she will post pics on her own FB page (that passes her test, I guess.) So, I snatched a couple to post.

Here's to new beginnings!



And, of course, one of those new apartments everyone seems to have at least once in their lives.

....tired

My kiddos started school last week. I was excited to know that I had a whole week (five days from 8-1) without kids! I pick up the little one at 1 and then his older brother a couple hours later.

What did I do? Way too much to list! I was a chauffeur between taking my oldest daughter back and forth to work (she has no car and lives close by) and taking my nephew back and forth to the local university where he'll be starting next week. Just when you think you're finished, something else pops up! I have yet to finish one particular thing! I get started on something and never seem to find the time to complete a task! Busy, busy, busy! Little things, big things, tasks and people that seem to need something right NOW! I know that everything will slow down and in a week or two, I'll be wishing I were busy again....well, maybe not.

As with new schedules, there are adjustments. On one particular day this week, I needed to attend a meeting at the kid's school where you hear about what's happening and then talk to your kid's teacher. By the time I picked the kids from the babysitter afterwards and got home, they wanted something to eat before going to bed. Not knowning whether they had eaten or not, cereal sounded like a good option, lol! I let my kiddo eat while he watched his dvd. I walked away a few minutes as I was getting his brother to bed and when I returned, this is what I found:



Yep,that's how I feel too!

Summer Speech

We didn't take a vacation this summer. We wanted to, of course, I always want to go somewhere with the kids...but we needed to do something more. My almost second-grader (who will start school this week) has had some speech issues and after many months of 'communicating' with our insurance (and those involved,) we realized that speech therapy wasn't covered. So we decided to invest in two or three days a week for speech therapy during the entire summer.

It was well worth it.Initially, I couldn't figure out exactly what he was doing incorrectly, especially with his 'r' and 'l' sounds, therefore I couldn't help correct him. I just knew it didn't sound right and he sounded like a little kid. My friends just think he has an accent from somewhere else (Boston? another country?) and thought it sounded cute. Perhaps. But as he is getting older, he needed to understand what he was doing differently and correct it. Once he realized he needed to keep that tongue "Tight, Up and Back," it got easier.

While he enjoyed the many games designed to teach him as well as have fun, he really loved the eating part! During one visit, the therapist and he made pizza (bagel, pizza sauce, mozarella cheese and pepperoni) in a toaster oven and he was hooked! He loved being able to make it and we had to do it at home as well. Of course, the reason she did that was to make a 'recipe' and have him repeat some phrases while doing it. I had him to that at home as well as she also sent home a 'recipe card.'

This is a picture I took on the last day of therapy. They are playing Angry Birds and she had already cleared out the therapy room of all the games and took down the projects they had made from the walls. He loves long sleeved shirts (even though it's VERY hot outside) and had just recently aquired a bright orange vest (like those who go deer hunting.) He likes to look like a 'hunter.'



I have always been a 'correcter' and find myself even correcting my grown children if they make a grammatical error so I know I'll continue to assist my kiddo as he learns to say these sounds correctly. It'll take some time but it was a fun summer nonetheless! It's amazing how FAST it flew by!!

Schlitterbahn Water Park!

Each summer, I look forward to going to a particular water park in Texas...Schlitterbahn! There are so many different kinds of water activities for all ages. You can bring in your food and drinks and stay all day if you want! My particular favorite is the lazy river where you just float around and around! Even better is the one at this park because it has big waves in it as well. At the end of the day, the waves get bigger and bigger because there are fewer people in it! My preschooler and I sit in a double floatie and enjoy the waves for hours! This time, I left him in it and I walked/floated next to it and held on to the handles of the floatie. I also had my waterproof camera catching some of the waves! It is also the first time that my preschooler was able to be ok putting his head underwater and allowing the water to cover him without getting upset! Maybe next year, I'll get a season pass so I can go more than one day! I think I get excited and enjoy it more than the kiddos do!

Video of some of the wave river...


My daughter also went with us as well as a friend of mine. Love the memories we make each summer! Next time we return, we'll probably have my daughter and her own child with us (as she's due in January.)

My daughter with my two sons:


Me and my oldest daughter:


My preschooler after he started putting his head underwater 'like a big boy!':


My friend:

Shoes!

I spent the Fourth of July at my sister-and-law's house. My hubby loves to go there on every Fourth because it's his favorite holiday! Both he and my SIL love to shoot fireworks! Since she lives at the bay, the fireworks are done at the end and they is seen from all over. Even the neighbors sit out just to watch the display that they put together.

While waiting for the next firework to go off, my youngest son exclaimed, "Fireworks make me happy!" My SIL said that it made it her the same way! It was a good day! Here are my feet as I was sitting on top of the picnic table on the balcony of their house waiting to see the colors in the sky!


We stayed at SILs for about a week. It rained some, it was sunshining some; relatively cool for what it feels like most of the time there during the summer. My older son and hubby went swimming in the bay. It was really salty (when it rains a lot, it's less salty, and it hadn't rained much.) My younger son didn't want to swim in the water where he couldn't touch or see the bottom. He stood at the side watching them swim. He also shared some songs for me while we were watching them swim. He has a cute little voice (barely audible most of the time.)


We returned on the day of my daughter's birthday. I picked up her favorite 'birthday cake' and took it to her. Of course, it was a large chocolate chip cookie that you get at the mall that had 'Happy Birthday' to her in purple icing. While we were at her boyfriend's house (where she lives,) we hung out for a while and talked.


These past few days, it's rained and rained and rained and rained!!! It's not surprising that it rains (it will rain a little each afternoon in the summer sometimes because we live in a humid coastal area near the Gulf of Mexico.) But, lately, it's been three or four inches a day and lots of thunderstorms. My kids have been loving 'swimming' in the giant water/mud puddles. I go out and watch them a lot and take gobs of pictures! But I wear my rain boots so I don't get my feet wet. While the boys get rainboots often (because they wear them out,) this is my very first pair.

Crawfish Weekend

I realize that so many of my posts are not specifically about me, per se, but about the people in my life. I was trying to think of what to write about 'me' this week and all I got from my observations was this:

Loads of clothes that need to be folded (and the pile behind it that needs to be washed.) Cleaning and keeping things in order has never been on the top of my priority list. It should be closer than what it is though, lol!



In the meantime, last weekend was Father's Day and we all celebrated it with an afternoon of cooking crawfish and shrimp. Since both my father and my hubby's father have passed away, we didn't have that option of visiting them. Instead, we loved the blessing of others visiting us. My family helped prepare and cook all the food. My younger daughter (who refused to be photographed but I got one of her from behind anyway) helped. My older daughter and her boyfriend came over (and by that time, I had forgotten to take pictures.) My brother came by as well and it was a really great day.

Here are some pictures of our day. My little ones, aka firefighters, helped out a lot too with putting out fires!