Tuesday, November 30, 2010

I'm scared

Some days are just harder then others. As any working parent knows, its hard to be at work on an unproductive day when you could be spending quality time with your kids. Its a slow day at work (obviously since I'm on here writing). All morning long, doctors, therapist and case workers having been calling to get updates on Fiona. It was one phone call after another of discussing plans of action and hearing them talk about my "poor little baby girl". And somewhere in the mist of saying the date of her heart surgery out loud, I started to shake. 5 more weeks till her surgery.

My husband brought the kids up to my work to have lunch and I held her and just stared at her. I've been letting my mind go to that dark place that your not supposed to go. I've been picturing tiny caskets and holding her cold hand and having to slap myself to regain my composer.

I'm scared.

I've also done the other thing you aren't supposed to do- go on the Internet. I've read mommy blogs of moms that have lost their little blessings and you can feel in their words life just isn't as beautiful anymore. I've always felt that I could handle anything God threw at me but I've never experienced losing someone that I loved in the deepest part of my bones. There is no doubt in my mind that I will get through these next few months, I'm just scarred of the person I may become if I lose her.

I feel like screaming at the top of my lungs when people tell me she'll be fine, " YOU DON'T KNOW THAT!" I'm back to feeling that same anxiousness I had before she was born, but this time its ten times stronger because I've met her. I know her, she knows me and smiles when she hears her mama and daddy's voice. I've seen her watch her brothers, rolling and twisting to follow their sounds. She's a living,breathing part of our family. And I thank God that I got to see my baby girl with pink in her cheeks because I know many mommas who never even got that chance. The pain of losing a child is hard no matter if they are 0 or 50.

I'm scared.

I want to just be with her, spend every waking second with her, and sitting here at work doing nothing while she's across the street at home is eating at me. I know I shouldn't be thinking and stressing about the possibility of her death. But I can't help it. Its real and very possible and I am searching for some of that strength I was able to find before she was born.

I still find hope in that Gods plan is bigger then mine. Nothing in this situation is in my control- there is nothing else I can do to plan or prepare for what's to come. In 5 weeks, I may be on my knees, asking for God to give me something positive to hold on to or I could be on my knees, praising God for protecting my baby. But either way, I'll be on my knees.

For this Christmas

I've been really struck lately with an overwhelming feeling of giving. As a mom who lives off setting up a picture perfect life for my kids, I feel that there is something a lot more important then having a Christmas tree loaded with gifts for kids who are too young to appreciate them. And as great as Toys for Tots and other organizations are that provide needy children with toys, there are many kids that don't even have their basic needs met- love.


I came across a blogger who is trying to help one little boy to get a loving family. Baby Cliff has Down Syndrome and has been abandoned in a European Orphanage. Jeannett of LifeRearranged.com started a fund raiser to help a family in the costly procedure of adopting him. Prior to reading this, I was just on the Internet browsing for the "perfect" gifts for my own kids- my daughter, who at 3 months can barely hold a rattle and my boys who find joy with the left over diaper boxes. How much better would my money be used to help a child find a family then on a toy that will be broken and discarded in a week?





To read more about Baby Cliff go to... http://liferearranged.com/2010/11/make-christmas-count-for-cliff/

Little Cliff, you are in my prayers sweet baby boy.

Thursday, November 25, 2010

Give Thanks

I'm thankful for the small things, well not really small, but the things we take for granted day by day...

my health
a roof over my head
food to eat each day
shoes on my feet
a supportive and loving family
my three kids
a loving husband
good friends
my husbands job and my own ( and that both of us have careers that allow us to have holidays off)


And then there's the things that I cannot express in words the magnituid of my gratefulness...

For my daughter.... there is so much to be thankful for with Fiona. A year ago today, she was just cells dividing in my belly. I was unaware of her and the extra set of chromosome 21. I look back on this past year, and all I feel is thankful. Although Fiona's health conditions are not the best, they could be ten times worse then they are. I could have lost her during the pregnancy and never have had the amazing opportunity to meet my sweet baby. She could have needed immediate heart surgery and we could have lost her then. I am forever grateful for anytime I get with her. I am thankful for her sight and her hearing, that she so far is hitting her milestones ( shes rolling over like a pro now all the time!) and that she doesn't have a lot of the physical markers of Downs. Shes strong, and fighting and I can't kiss her enough when her warm, little body is in my arms. I'm thankful God gave me Gavin and Breiden, two healthy amazing boys, who love on their little sister and are there to protect her and help her develop.




For our friends and family.... the support both emotionally and financially that we have received in this last year from those close to us is overwhelming. Their help has gotten us through the toughest moments and it has brought so much comfort to me knowing so many people are praying for our family.

My husband... who has been my rock this past year.

Thanksgiving at our house was low key this year. Southwest Florida had a beautiful, sunny and 85 degree day, and we took advantage of our nice weather and went to the park with the kids. My super hero husband came to the rescued and saved a ginormous turtle from the middle of the road. You know, nothing big.





We spent most of the day fighting with the kids over the TV- we wanted football and they wanted Thomas the Train- and fighting with them to keep their clothes on. Mimi came for dinner, the wonderful pre-cooked meal from Publix my dad ordered for us, thank you so much for the nice, easy dinner Dad! I took all the things that the boys told me they were grateful for and made place mats for them, with their hand turkey painting and all.

Some of my favorite responses?- Shoes, blue alligators, cheese, and two eyes.



                    











So, I pulled out the box of Christmas decorations and its tree hunting tomorrow. We kicked off the Christmas season this past Monday down at the Naples tree lighting. And time just keeps flying by.
 


Saturday, November 20, 2010

Roll over, Fo-na!

So Fiona decided to screw the slow lane. 9 months, what? Ya, she rolled over today! Neither Charlie or I were here for it, the nanny got to witness this milestone. I have been sitting by her all evening, waiting for her to do it again. That little right leg kicks its self over but she stops there and rocks to her back again. So happy for my little rockstar. (She also kicked butt at holding and playing with her teething rings).



Friday, November 19, 2010

The slow lane

Fiona had her Early Steps evaluation today. I've been anxiously awaiting for this day. Its hard to tell with a newborn how well they are advancing because the milestones aren't obvious. You know that your child is doing all right developmentally when they roll over, crawl and walk. That's huge. But there's little things that aren't so black and white. They may be doing them, but it matters how well they are doing them that counts. And, unless you are trained to know exactly what how well means, then its hard to tell where they stand.

At three months, a baby should be smiling, making vowel sounds, be able to follow a light with their eyes both vertically and horizontally, should respond to noises, should be attempting to role over and they should be lifting their head and turning it side to side. Technically, Fiona is doing all of these things, but a lot of them just not very well. She can't lift her head more then a milometer off the floor, and her head movements are jerky, not smooth and coordinated. Her eyes are on a lag when following a light, and she struggles with the vertical movement. And although she is smiling, its more like a quick smirk- hard to tell if its a responsive smile or just a twitch.






We set her tangible goals today. In six months, they would like to see her having smooth movements and to be able to role just on her side. Her feeding is still the number one issue and the main focus in her therapy.

And then there's the fist thing. We have to get this girl to start playing with her fists open, grabbing objects and stretching out those little fingers.

I read a poem when I first found out that Fiona had Down Syndrome and the last line just keeps running in the back of my head.
      
     "The Lord gave me life, to live and embrace. And I'll do it as you do, but at my own pace"- author  unknown

I think Fiona is a gift God gave me to slow down the pace of my life. I am a go-getter that doesn't often stop moving. I always slow down smell the roses, I just rarely stop . And my boys take after me. They were off and walking by 9 months ( the same age they hope Fiona will be close to just rolling over). They were early to hit all of their milestones. Heck, my fast-pace life is half the reason I do this blog- to capture moments in my whirlwind.

Fiona hit the stop button when she came into my world. Those big, blue almond eyes looked at me and said, " Stop and just enjoy it, mommy". Everything from her diagnosis to her fragile life made me realize how precious each of my kids lives are. She is a constant reminder not to rush to have the life you want, and miss living life in the mean time. I always looked forward to my kids being just a little older. I couldn't wait for the boys to walk so I didn't have to carry two car seats around. And then when they could walk, I couldn't wait till they could talk so we could communicate. And when they could talk, I couldn't wait till they were old enough when we could play games. And now that they are old enough to play games, I can't wait till they are old enough to do arts and crafts with me. There is always something more exciting to look forward to, that I forget to enjoy the things we can do now.

I get to have a baby a lot longer then a lot of people. I know someday, I'm going to stop wishing the boys older and wish for the days when they were small enough to snuggle on my lap. I need to be enjoying this extra long time I get having Fiona be my tiny peanut. And the extra time I get carrying her around until she does learn to walk and is running away from me. Shes in no rush to rush through life, and she's teaching me the beauty of living in the slow lane. I'll be there to cheer her on as she grows and develops on her own time, and I will be there right by her side to encourage and help her become the woman God created her to be.

Wednesday, November 17, 2010

Feelin' Better

Without fail, right when I feel like I'm in over my head and I am ready to throw in the towel, the wind shifts and suddenly it all gets a bit easier. Or I get the patience to handle it all. Not sure which, but I am so thankful to be out of the storm and into calm water again. We almost have a healthy household again, me being on the last leg of my cold. I had my first mommy-of-three freak out and I really didn't think I was going to make it through. Gavin was sneezing snot rockets every three seconds, Fiona was struggling to eat and her congestion was making her eyes stream rivers of tears, Breiden was running a fever, achy and crabby and I was feeling the same as B. And it doesn't seem to matter how much help I get, when the kids are sick, they only want me. My perfectly healthy husband was ready and willing but no, they wanted to climb and whine all over sick mommy. And all mommy wanted was 24 hours to relax and recuperate so my head cold would go away. Well, with the help of lots of fresh garlic and numerous steamy showers, I'm just left with a sore nose and three kids that are in much better moods ( and some pretty kickin' garlic breath).

We had a nice weekend with my dad in town, its a shame we were sick the whole time he was here, but still great to see him. He was a great help with the kids, letting me have a night out with some girl friends and watched the boys while Charlie and I took Fiona to her doctor appointments, the first time in a couple of weeks we went together.Such a great grandpa and its always hard to say goodbye.



Its a lot easier to tolerate the terrible two's whining without my head pounding. There has been a lot less clenching of the teeth in the last couple days, and a lot more laughter at the crazy adorable things that come out of my two year olds mouths. They have been bossing each other around lately. Today, I asked Breiden where he was, and Gavin demanded him to "Come here, Bray-en!" And when I say demanded, he screamed it like he meant business, stomping his foot down and pointing to the ground. Gavin trys so hard to have full conversations, and the Italian in him comes out, hands going as fast as the mumbled syllables that tumble off his tongue. I usually only can catch the last word of his conversation and 90 percent of the time its "trains".  Breiden has become quiet inquisitive, always asking "How works?" and "Who's that?". He also learned how to answer, "I don't know" when I ask him questions, probably because that is my response to the majority of his questions.

It had been awhile since we had been to Fiona's local cardiologist, who's weight is the only one we take seriously because its the only consistent scale she is weighed on. She's 8lbs 14oz, a slight improvement from four weeks ago's 8lbs 9oz. She only gained 5oz when she should have gained 28. But at least she's still gaining. We head back up to the children's hospital this coming Monday for another GI evaluation and unless she drastically packs on some weight between now and then, I don't have high hopes for avoiding the feeding tube. Its heartbreaking and frustrating watching her struggle and refuse to eat. And strangers don't realize the panic they inflict when they point out how small she is for three months and that she wasn't preemie. Shes still the size of most newborns. But as much as I want her to grow for her health, I'm cherishing the extra time with a little one, because I look at my boys and I know this time when they're small doesn't last for long. I blinked, and the pregnancy was over and one day I am going to blink and all of this is going to be behind us and she will be running circles around our kitchen, chasing her brothers. That's my prayer.


Saturday, November 13, 2010

Thump, thump, thump

I've had a headache for the past two weeks that just wont go away. Its a little from a cold I've been battling, a little from my constant worrying over Fiona, and a little from the frustration of trying to keep twin two year olds in check. Our battle of the wills has me clenching my teeth, trying to prevent everything inside me from jumping out and strangling my two defiant little monsters. ( Don't go calling child services, I would never!) But the whining and tantrum throwing is enough to keep my headache pounding on.

Terrible-twos are in full swing, and its definitely a balancing act trying to keep them safe, be consistent, and keep my temper. All on top of keeping the house dark and quiet (ya right) so that Fiona can eat correctly. I knew this is what I was getting into with having my kids so close together, and I'm not complaining about my situation, more just venting.

Ever since the time change, nap time has become a huge fight between mommy and the boys. We've gone a few days completely skipping napping all together, and oh how those few hours of missed silence have kept my headache fueled. My husband never seems to have too much difficulty getting them to bed, but with me they just want to party all day. Probably because mommy's more fun ( just kidding, hunny!). I finally got them down, at 4:30, after Breiden sat and cried by his door for a half hour- or more screamed bloody murder by the door. Turned out he left his blankie in the living room, but he was so hysterical about it I couldn't understand him.

What keeps me going through the day is the few good moments between the tantrums are that good. I pulled out the good ol' construction paper this afternoon for some arts and crafts time and the boys helped me put together these turkeys.






I tried teaching the boys what being thankful means. But my attempted to define the word, in which I could only think to explain by using even bigger words such as appreciate and grateful, probably didn't do much good. I sat at the kitchen table, the boys on the table, and I wrote down everything they told me they were thankful for. They gave me their answers so enthusiastically. I'll reveal their responses at a later date.






Just this half hour of quiet has helped ease the pounding in my head. I'm just cuddled up with my sleeping beauty, enjoying her warm little body in my arms. She's refusing to completely give in, keeping one eye on me, just slightly open. She didn't eat very well this morning, but shes making up for it now. She really does eat better in the quiet. Oh no, someone is already awake crying. There goes the quiet as well as my break from the pounding in my head.

Wednesday, November 10, 2010

Little Legs

Oh, how I love having a girl...


The bows, the flowers, the rompers and the tutus...


And my new favorite baby accessory, stripped leggins...






We train girls young... accessorize, accessorize, accessorize! My favorite outfits are the most plan ones, jazzed up with chunky jewelry and a loud pair of shoes. Oh Fiona, just wait till we get those crooked little feet fixed so they can slide into some shoes! Ballet flats, strappy sandals, boots- oh the boots! But for the time being, I have fallen head over heels for little crooked legs in leggings. And thanks to these great etsy sellers, www.etsy.com/shop/fategoddess and www.etsy.com/shop/stocktopuscreations , my little wiggler has a nice collection to keep those legs dressed up and warm.

I'm growing more and more jealous of my daughters wardrobe each day. You can dress up a baby to the 9s so much cheaper then yourself. The holiday catalogs keep coming, and it takes all my strength to dump them in the trash before I open them. Occasionally I slip, and find myself lusting at all the new fashions. The change in the weather always creates an urge to get a whole new wardrobe. But, when you are on a budget with $0 in the extra spending column, you have to get creative to satisfy that crave for something new. Its time for a closet purge and reorganization to "find" some new outfits.

And speaking of $0 for extra spending, instead of buying the kids their Christmas ornaments this year, I made them with something I always have laying around the house- yarn.



After some time searching etsy to try to find the "perfect" ornaments, I came across some crotcheted ones and stopped looking for something perfect and settled with something free made with love :) I can let myself get all worked up about having a perfect first Christmas for Fiona, but in reality, she doesn't care, nor will she ever remember her first Christmas. Just like our boys will be just as happy with a box of bubble wrap as they would be with a hundred boxes of toys- both they would only play with for a minute before they left it laying in the middle of the room, forgotten about.

I can't believe I am talking about Christmas. I normally try to let each holiday get its time to shine before moving on to the next, but this year I've already skipped over Thanksgiving. For me, its the hardest holiday to celebrate in Florida. Thanksgiving is all about the corn husks, turkeys and the fall leaves- none of which are found anywhere near us. And its all about the family getting together over a big feast, reflecting on the year and what they are thankful for... but with a family of 5 ( 1 that doesn't eat and 2 that don't eat much), there will be no big feast. There really is no need for even a full turkey. I'm seriously lacking in my Thanksgiving enthusiasm and need to get into it soon, because it will be here and gone before I know it.
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