Genetics....The Blame Game

Sometimes things just don't go according to our plans. That happens to me alot. I could make this all about how much I hate it when things don't go my way. I could whine and complain, but I won't. No, things don't always go according to my plans, but I'm okay with that.

Back in November, I took Delaney to have some genetic testing. I wanted some answers and so did her doctors and therapists. I walked in the doors of that facility hoping to come away with some kind of comfort. I wanted someone to finally be able to explain away all the medical issues and problems. I wanted someone to tell me that the sensory issues and the speech delays, the crooked fingers and the stomach troubles....well, I just wanted someone to look at me and say, "this is not your fault. You didn't cause any of this. This isn't all in your head. We can help."

You know, at first, I never would have even considered pointing blame. Why play the blame game anyway? I never saw anything "wrong" when I looked at her. When I was holding her or rocking her I didn't feel like something was "wrong." She was, is, and always will be my girl. I look at her and still see her, even now that I know what I know now, as this beautiful, wonderful, perfect little gift. My miracle. No, I never would have thought to place blame on anyone, including myself. UNTIL. Until someone said, "well this must be your fault that she's always so sick. WE don't have anything like that in OUR family! She must get it all from YOUR family" And just like that, the seed of guilt was planted in my brain. Over time, it gnawed at me. It ate away at my rational side. I convinced myself that I must have done something. I MUST HAVE DONE SOMETHING that would make her developmentally delayed. I must come from a family with a rotten gene pool. Makes sense, right? Well, it did to my MIL.

Well, I took my girl to that appointment with genetics and I told them all about our family histories. Turns out, I'm not the only one with a crummy gene pool! Ha! First thing they told me was, "stop blaming yourself." OK? Can I really do that? Next thing they said was, "it couldn't all be inside your own head because you wouldn't be here with her now if her physician didn't think you needed to be here." Third thing they told "Let it go. Accept her as the blessing she is. Get your answers for your own peace of mind and not someone else's. Take your answers, if we can offer them, and use them to decide what path to take with her health care from here. Some walk away from genetics with no answers at all."

Turns out, you can't really just walk in on your first appointment and walk out with all the right answers. Weeks turns into months. Months, for some, can turn into a year or more. We were fortunate, I think. We only waited a few months. I was given some of the results over the phone and then we scheduled an appointment to come in and have a counseling session.

The appointment was scheduled for yesterday and I REALLY wanted to go. I want more info and I'm sure they will have plenty for me. Unfortunately, I couldn't make it to the appointment so I will go on waiting. At least until April, when they can fit us on the schedule again. So, I didn't make it to my appointment . But I have one answer. Nothing has changed. I still love her just as much as I did before I went looking for answers. She is still this beautiful, wonderful, perfect little gift. And I wouldn't change her for anything.

No, things don't always turn out according to our plans. Sometimes, they turn out so much better.

Hero

She says I'm her hero. Doesn't matter what I do or say, she thinks I'm the greatest thing since sliced bread. I hear it at least 10 times a day. "I wub you momma, you da bess momma ebba," She says this as she leans in and grabs my face for her sloppy, little girl kisses. I wrap her up in my arms and tell her I love her too, that's SHE is the best Moosey ever. Then, I give her a kiss on the nose or a pat on the behind and she's off running again. What have I done to deserve her hero worship? Ususally, nothing. Maybe I've given her a refill for her sippy cup, maybe a little snack in between meals, but not really enough to deserve the adoration that I see on her face when she looks at me.

"I'm momma's buddy," she says as she scoots away from her daddy when I come to sit beside them. "But you just said you would be daddy's little buddy," he argues as he feigns a sad face for her benefit. "NO, my momma! Moosey am Momma's buddy!" And then she kicks him. Hard. In the stomach. And I turn my face away and laugh quietly to myself because she has chosen me over him yet again. Nope, no "daddy's girl" title for my little Laneybug. She is all mine and I love it.

She wants to help me with everything. I can't load the dishwasher without her. I can't load the washer without her standing right beside me, handing me clothes. And when it's time to start the dryer? Why yes, that IS Delaney sitting on top of it yelling, "me do it! me do it!" while waiting to press the button.

She has her good days and her bad ones too, as all special needs children do. She's healthier now than she's ever been and I'm enjoying a reprieve from all the hospital stays and doctor visits. She's still in therapy, but is improving far better than I ever thought possible. There was a time when I thought she'd never talk. Now, she's never quiet, but I love it. I love her and I love everything about her....every unique feature, from her crooked little fingers to her lopsided little smile. I love the way she scoots her feet when she walks, the way she mispronounces almost everything she says, the way she scrunches up her face when she's concentrating on something. I love the way she loves....anything or anyone that crosses her path. She's so vibrant and full of energy. She loves everything...green beans and corn, hot dogs and ketchup, cookies and Reese cups, school and her best friend Mason. And ME. She loves me! She tells me I'm her hero. That I'm the "bess momma ebba." What she will probably never fully understand is that SHE is MY hero. She is what makes me the "bess momma ebba." And I'm proud of that.

A Look Inside (And Outside) Our New McNabb Land

A sunny view from my backyard
Just after sunrise (from the back porch)
I could sit out here all day watching Laney's "moo cows" graze (she thinks the cows came with the house! shh! I'm not telling her that they didn't)
Outside front of house
I'm planning to put some colorful flowers in the beds on both sides of the porch and also on the walkway
From the front porch, looking off to the side toward the back yard (and the girls' swingset)
My bradford pear tree in the front yard. The flowers in the bed are iris' that will bloom (hopefully) in May or June
From the front porch looking toward the driveway
Half of the front porch
This is a 16x20 of Paisley. Just thought I'd throw this picture in because it's one of my favorites that I just hung on the wall in the living room
One corner of our living room. Also, a 16x20 of Destiny :) I LOVE my striped curtains and had these same curtains hanging in our old home. I was very excited to discover they worked in these windows too!
Another picture thrown in just for fun. Laney loving on Sugar in MY chair. And yes, that is a photo blanket draped over my chair....love me some pictures of my babies!
Looking into the kitchen from the living room. I LOVE LOVE LOVE my french doors. This house is so much brighter than the old one! I love my windows and these doors. I only cover the windows and doors at night so we can almost always see outside (on the odd chance that we aren't already sitting outside!)
This one is really similar to the photo above, but I included this one to give you a better idea of the color in the living room and kitchen. The paint color I chose was called "Sandy Pebble" and I think it really brightened those two rooms alot. The color we painted over was a weird brown color and it was really dark in there....even with the curtains open and the lights on. I like this so much better.
More of the living room. I want to hang some more photos on the walls, but I have to wait until I can afford to have some photos of Laney printed. I have tons of printed pics of the sisters, but the only prints I have of Laney is the 16x20 of her yawning and 2 that are already framed on the TV
Destiny's room.
Looking into Destiny's room. Also, a 16x2o of Laney :)
They're playing in there now, but I took this one to show the actual color (aqua) of Destiny's bedroom
A picture just to show the actual color of Paisley and Laney's bedroom
Laney and Paisley's room. Notice that Laney and Sugar have made themselves at home on Paisley's bed.

So there you have it. (Sorry the pics were such bad quality. They were all taken with my phone. I found my camera, but now I can't remember where I hid my charger.) We still have a few things that need to be done, but we're already thrilled with what we've accomplished with it so far. I will eventually get some rugs for the girls' rooms, some new bath towels, wash cloths, and dish towels (I'm in need of some new ones anyway), maybe an area rug for the living room, and I still need to buy the paint for the bathroom that the girls are all sharing. They want it to be pink...lol go figure. It's a work in progress, but it feels like home and I'm just happy to finally live in a place where I feel like I belong.

A Change Of Scenery

We moved last week!!!!!! We are buying a house and I couldn't be happier. This new house is bigger and has more space for our little family. Destiny has her own room and Laney is sharing a room with Paisley now. The kids are so thrilled with the new house, but we all love the yard the best. We now have this HUGE back yard with plenty of room for the girls to run and play. The view from the back porch is gorgeous (especially compared to our old view!) and when I sit outside watching the girls play I feel this sense of peace....belonging. We belong here. This is home. Words just don't adequately describe how happy I am now. I will try to post some pictures of our new home very soon. I've got so much left to unpack and I've misplaced my camera! :(

All Aboard....An Adventure

This year for Destiny's birthday (my baby girl is 10 now!) we decided to take a trip. I wanted to do something special for my girls. Maybe now would be a good time to backtrack in this story. I'll start at the beginning. We had been learning all about the Titanic in home school and Destiny had taken quite an interest in all things Titanic. She had so many questions and would get so excited when she would find the answers to those questions.

About a month ago, I decided that it would be fun to take our family for a weekend trip to Gatlinburg or Pigeon Forge. I started researching for a good hotel and getting prices for fun things we could do while we were there. We decided to go on our trip during Destiny's birthday weekend. I found an awesome deal on a family suite. It had 2 bedrooms (each with a television!), a kitchen, a sitting area, and a private balcony. The amenities included an indoor pool, a lazy river, and a game room. The kids were thrilled and that's all we heard about for a month. Laney just kept going on about the pool. She couldn't wait to put on her swimsuit and see the pool. On the day that we left for Pigeon Forge I asked Laney, "where are we going?" and she said, "gone fim im fimmy pool! Go!"(translation: going to swim in my swimming pool! Let's go!) We left on Friday, February 18th. We decided to invite my sister to come with us. The girls love spending time with her and we don't get to see her often enough. The hotel was just as nice as the website promised. It was really the nicest place we've ever stayed at.

I had booked online for boarding passes to the 'Pigeon Forge Titanic Museum' for Saturday, which was Destiny's birthday. I was a little bummed to discover that we wouldn't be allowed to take pictures while we were inside the museum, but I was happy to take my camera and get some shots of the exterior. Talk about a neat looking building! On Saturday, we were given boarding passes and new identities while we waited in line to "board the ship." **giggles** Yes, I said we were given new identities. They gave us each a card with a name of one of the original Titanic passengers on it. The card told the age and class of the passenger. It also told basic info about that person's life before they boarded Titanic. Before entering the museum, Destiny told a crew member that is was her birthday and she had chosen to spend her special day learning about Titanic's only voyage. The rest of the day she was given special treatment. Every crew member on the ship made a fuss over her. They even gave her a special gift for being there on her birthday. We all had a fun day. The tour took a little more than 2 hours and no one was bored. Laney was even interested in looking at the various pictures and artifacts on display. Our cards told us to look for certain display cases in the museum. When we found those display cases we would find new information about our special passenger. At the end of the tour we would have the chance to search the memorial wall of names to find out if our passenger made it off the Titanic alive. We got to keep our cards and I plan to add them to my scrapbook.

Bobby was Henry Sleeper Harper. Henry was a first class passenger traveling with his family. He also had his dog with him (one of only 10 dogs on the Titanic) and the card reminded him to make sure to ask a crew member if the dog lived. (It did, by the way!) Henry was plagued with tonsillitis that came on soon after they boarded. He was a member of the famous family behind the Harper Publishing House.

I was Mary Fortune, a first class passenger from Winnipeg, Manitoba, Canada. Mary was traveling on the Titanic with her husband and children.

Destiny was Juliette LaRoche, a 2nd class passenger from Paris, France. Juliette was married to the only African American man that was aboard the Titanic.

Paisley was Emma Bliss, a crew member on the Titanic's maiden voyage. She was one of only 23 stewardesses on the ship.

Delaney was Selena Cook, a 2nd class passenger from Oxford, England. Selena suffered from a terrible toothache during her voyage on the Titanic and, oddly enough, we got to see the tooth that was giving her trouble when we went thru the cabin area of the museum.

My sister was, unbelievably, Molly Brown. This is funny to me because before we got out of the car that morning my sister said she wanted to be Molly Brown. They had a big stack of passenger cards and we weren't allowed to choose who we got to be for the day. They arrange the cards so that no one can end up with the same identity. Each stack has only one Molly Brown.

Here are some pictures of our day: