Wrap it up with a bow and send it off with a kiss

Today is the end of the 2011...it always amazes me to write that out 2.0.1.1.  It feels like the Y2K scare was just last year doesn't it, and here we are bracing for the start of 2012.  Gosh, thinking back to Y2K and all the "fear" is almost funny.  I was pregnant with Haven around that time (she was born in May) so I really only cared if there would still be popsicles if all the world's computers stopped working...popsicles helped with my morning sickness :)

So here we are, the end of another year and as I have stated before, I don't do resolutions because they get tossed aside like a prom dress.  So instead I will wrap up our year with a tidy little bow, and feel content that I think we did the best we could in our endeavors and we tried to live life to the fullest and appreciate what we have been given, well, at least most days we did!

This year had it's trials, mainly dealing with Finn's health issues and trying to figure out what was going on with him.  Now we know and have begun working through getting him what he needs, such as therapy and visits to specialists.  I will say, that he has come so so far, and back in July I would not have imagined we would be where we are.  He is still lagging in some areas, but I am watching him make progress every day and I am excited to see what he will accomplish in the coming year.  This year Grayson finished Kindergarten and started First, Brittan finished Third and started Fourth, and Haven finished Fifth and moved into Middle school.  They are great kids and doing well in school and they make me incredibly proud daily.  Teagan turned two and holy smokes she is a riot!  This kid is destined for something big, I can't explain it but there is just something about her personality and her wit (yes she has wit at two!) and she is smart and sweet and just naughty enough to keep me hopping. Oh and my Finny, he is such a sweet boy, smiley and happy and lately he has been showing a bit of a temper which makes me laugh.  These kids, without them our lives would be sad and lonely and boring, I am so very thankful for all they bring to us and for being lucky enough to be part of the team that is parenting them and hopefully raising them into five fantastic adults.

Personally work has been great and I am lucky enough to have my FT gig and PT gig.  I feel appreciated and respected at both and given that so many people are without work right now, I am thankful every day that I have my positions and that Ryan has his job and that we are both afforded flexibility in our schedules so we are able to be here for our kids.  I completed the first three chapters of my dissertation this year and had my first defense a few weeks ago and was approved with just a few small changes...so happy that I am moving forward!

Looking ahead I think this will be a big year for us.  We are meeting with a developer soon to discuss building our dream house.  We are also beginning to search for land to build that house on.  This summer we will either be moving or finalizing the house for us to move or rent it out since our cut off to move away is Summer 2013 due to the kid's ages and stages in schooling.  It is a scary and exciting time here as we begin these final steps, but it is time to make these changes for our family.

I wish you all a Happy and SAFE New Year, remember it is not about today or tomorrow, but all the days that follow.  Make resolutions to be present, open, joyous, and truthful as those are easy to keep, and remember to tell the people in your life that you love and appreciate them, you can't say it enough.

See ya on the flip side!

A disaster of epic proportions

I had a bright idea.  I thought we could load the kids up on Monday and head up to a few areas in West Virginia to see if any of the houses I saw online would be a good fit for our family.  I also wanted to see how the areas "felt" to us.

It started off badly and we should have stayed home, but we went anyway leaving late.  That meant we got to WV late, and stopped for lunch late, and the place was reaaaaaaaally slow, and the kids were restless and well, we should have come home, but we pressed on.  Then the houses sucked.  Well they were beautiful big houses on huge lots, but they were on the side of a mountain...not ideal for our needs.  Then we almost ran out of gas in my huge van in the middle of nowhere.  Disaster.

So we have come up with a different plan to look for houses and I think this is a better idea.  Hopefully within a year we will own new land and be on our way to building our dream home!

A Very Merry

Wishing everyone a very Merry Christmas, Hanukkah and holiday season.

The week was a whirlwind.  I had my first dissertation defense on Tuesday and was approved with only a handful of small changes...woohooo!  We then began holiday overdrive.

My parents arrived Thursday and on Friday the big girls went out for a special Nana day and Grayson had a special Papa day and well, the babies and I went to the grocery store :)

Saturday my sister and her family came and it was a total blast.  We were supposed to then go out to dinner for Ryan's birthday but we were beat so we ordered in and everyone watched Elf :)

Today was as mad as anyone can imagine Christmas morning with five kids would be.  The children were overwhelmed with their presents and completely overjoyed.  We had a nice family breakfast and then basically laid around all day and it was wonderful.

So thankful for my beautiful family, and the love and joy they bring me.  Hope you all have had a wonderful holiday season thus far...onward to new adventures tomorrow!

Cram in that holiday spirit

When I was a kid, finding the holiday spirit was easy.  Everything was done for kids, the displays, the songs, the cookies.  What I did not realize then was that someone actually had to make those things happen, and now as a mom, I have come to realize, sadly, that it is on me.

So I bake the cookies, a bazillion different kinds and 12 million dozen of each.  Then when the kids raid the freezer where they are stored and eat them all up, I bake a bazillion and one.  I wrap...and wrap....and wrap. Five kids plus lots of prezzies equals hours upon hours of wrapping, like 6 hours of wrapping...it was insane.  I have about three more things for my kids and then my parents, my niece and my nephew to go and we are officially done. and I can hang up my scissors and tape for another year.

So today I got up and out the door at 9 so I could run to the bigger town south of us and get the last few errands done.  I had three stores and the farm to go to and even leaving at 9, I would be lucky to be home by noon. Left the kids with the hubby and off I went.  Then I got to Best Buy and grabbed my stuff and noticed....my wallet was missing.  Crap.  I then remembered that I put it on my end table last night before I began wrapping (again) and I didn't grab it on my way out the door.  I also did not have enough gas to get home since gas is cheaper in that town and I planned to fill up, if you know, I had a wallet.  The only saving grace was that I had the hubby's car and he had the big van, so he had to load everyone up and drive down to bring me my wallet.  It took them an hour, since they weren't dressed and well, they are slow, and by then I was in tears and stressed and I hadn't even had any coffee!  When he pulled up, I burst into tears like a baby because I had so much to do, and the hubby kindly offered to go to the farm for me to save me the extra drive and stop.  So off I went to the three stores, got what I needed and made it home to clean like mad and bake those replacement cookies.  Now getting ready to serve dinner and then work so that maybe, just maybe, tonight I can watch a festive show or movie to get more in the spirit.  Seriously, we need to get on that whole "elf" idea!

Being grateful

I am trying to see things from a new light since it can be so easy to allow "hardships" to get us down. See, we don't really have real hardships, we are never hungry or cold or unable to afford the things we really need...want yes, but need, those are always covered.

So...today I went to the foot/ankle doctor since the ankle I sprained in October when we were at Disney is still hurting.  The negative view-poor me, my ankle hurts and I have to wear a brace and may need surgery.  The positive view-How lucky am I that we got to go to Disney with the kids and that I have excellent health insurance so that I could go to the doctor when the pain got to be too much.

I, as usual around this time, am stressed about money after paying for Christmas.  Negative view-why don't we have more money so that I don't have to be stressed for no good reason.  Positive view-how lucky are we that we worked hard and saved and this year made enough to get the kids all their needs and most of their wants paid for in cash so we don't accumulate debt.

I also wish we could move, but sadly the market is just not there yet.  Negative view-Stupid housing market, we want to move and are paying an absurdly high mortgage for a house we don't want.  Positive view-How thankful I am that we bought a big, yet in need of major work, house when we only had two kids in a great school district.  Then we fixed the house up and made it a home, and while not ideal, it is ours and we are comfortable.  Also we are not terribly underwater like so many friends and even though our mortgage is very high, somehow we manage to pay it.

Another huge stress right now is work since it is the end of the term.  So much to do, grading out PT school and getting FT school tucked away for the week off.  Then there is my school that is demanding and Ryan's job that has been on the edge for two years.  Negative view-I am so overwhelmed, there is too much to do.  Why don't we know about Ry's job will they ever tell us if layoffs are happening?  Positive view-We are so lucky to HAVE jobs!  I have a FT and a PT that are consistent and reliable.  The PT gig even has me developing online courses for them so I can teach more, so very lucky!  Ryan has a job still two years after layoffs started and we know that if he gets laid off we get a good severance package and I can switch us over to my company for benefits.

These last six months with waiting on Finn's results and navigating the possible outcomes have taught me to look at all we do have, and when I do, we are very lucky and blessed.  I hope you are lucky and blessed too and can see all you have and not what you don't.

As if I wasn't busy enough this week

you know, with closing out classes at PT school, kid's events, the FT job and oh, you know, Christmas to prep for...I now have my first dissertation defense on Tuesday.

The first three chapters are done and ready.  The outline for the presentation is ready.  I am just not sure I am ready!  I have to put the powerpoint together tomorrow and finalize it Friday.  I will then write my "script" so I can be prepared for the presentation.  I am beyond nervous, not because I think it will go badly, I mean, my committee has seen everything up until this point, but because the presentation includes a defense and one of my committee members can be really hard to deal with.

So very nervous, but also anxious to get over this hurdle!

What a week of ups and downs!

Oh last week, you were a bear to deal with!  It started with one of our blow up decorations being stolen on Monday night, then two days of horrific rain, one kid's bus hitting a mailbox, another kid's basketball game and then Thursday night the people came back and stole our awesome Santa plane and in the process destroyed almost everything else.  Poor kids were destroyed Friday morning.  We pulled it together the best we could, I gathered what we could save and moved it and then headed out to get the groceries for a get together we were having Saturday.

I stayed up all night Friday to keep an eye on things so that the kids would not have to wake up to something upsetting again.  Thankfully nothing happened and Saturday we went to the pancake breakfast at the kid's school, which we do every year, and then came home and cooked and cleaned and prepped for the party that night.  Time came and guests arrived and the yucky stuff from the earlier days disappeared as kids had fun with friends, ate tons of sweets and had a blast.  The adults all seemed to have fun too and after everyone left we all collapsed into bed!  Sunday was quiet, we cleaned up some more and basically hung around the house to recover from all that fun.  Around dinner the doorbell rang and out next door neighbors were there with four HUGE blowups that they no longer used.  My kids were thrilled and I was so touched.  It was so sweet to bring them over and the kids felt so loved and we were able to tell them again that while there are terrible, Grinchy people in the world, we choose to surround ourselves with amazing, kind and wonderful people and that is what the holidays are about.  So thankful for the kindness of friends for lifting my children's spirits!

Today was quiet.  Britt had a sore throat and stayed home andFinn had his first day of therapy. It went really well, he was cooperative and seemed to react well to the therapist.  Today was educational therapy, basically we are working on communication and cognitive skills, tomorrow the physical therapist will come and I think she will be thrilled to see some of the skills Finn has been working on.  We are so thankful for access to excellent doctors, services and support through this whole process.  Finn is such an amazing little boy, he is so determined and that overrides the limitations his condition provides.  We watch him work daily to fight against the weak muscles or poor coordination to get that toy or climb up that item, etc.  He will not be held back, and that is amazing to watch.

Today, today is a good day.

Here is the thing...

I love my family. Like LOVE them to bits and pieces and think they are the best people in the whole wide world.  Don't get me wrong, they have their faults, but I really, really love them.

So that is why I get so damned pissed when people screw with them.  Like, seriously pissed the hell off.  Finn turned one on Saturday and not one.single.member of my husband's family even called to wish him a happy birthday.  Is calling expensive or hard?  Nope.  Oh, did I mention that not one.single.member of his family has SEEN the baby?!  Yep, not one.  So how do you think that makes my husband feel, that his mother, father and brothers have not seen his youngest child yet?  Yeah, makes him feel pretty crappy.  How do you think that makes my kids feel, that their grandparents and uncles have nothing to do with them?  Yep, pretty crappy. How does that make me feel....angry.

But see here is the thing....all those people are the ones who are missing out.  They don't get to know my amazing, smart, sweet, funny and kind kids.  They miss all the cute stories and all the accomplishments.  They will not be invited to graduations and weddings and they will have no place in the lives of these children when they grow into adults and go on to do amazing things with their lives.  See, you don't get to miss calling for first days of school, birthdays, dance recitals and award ceremonies and get included.  You don't get a place in their hearts when you don't care that they almost died from an allergic reaction, that they needed an MRI, are hospitalized or that they have been going through major genetic testing and scaring their parents out of their wits.  See, in the end, you lose.

WE are fine.  WE don't NEED you, heck, at this point, we don't WANT you.  See, we are stable and successful.  We pay our bills and do just fine. We educated ourselves, we worked hard, we built our lives around our kids and know we will be parents FOREVER, because it takes that kind of commitment.  We have a support system and we know that when OUR kids are grown, we will be in their lives and we will have a place in their hearts.  WE know that when we are old, our kids will take care of us.  WE know that we are doing a damn good job of raising good people, it is too bad YOU don't get to know how they turn out.

One year old!

I cannot believe it, but today our sweet Finny turns ONE!

We are so lucky to not only have been blessed with five children to love and raise, but with some of the greatest kids around.  So thankful that Finn joined our family, our life and family is complete with his addition and I am so happy to welcome him into his next year!  Happy birthday Captain!

What a day!

It was quite the day today.  It started off innocently enough, the three big kids left for school and I planned to get some cleaning, laundry and Christmas baking done since I just had the two littles.  I was feeling a bit rough since both babies and I had colds, but I figured it was because it was morning so I brewed the coffee and got down to business.

Then the babies fell apart, at like 8:30 am.  They were two mini meltdowns, both sobbing all the time, Teagan screamed at me incessantly about nothing, they wanted to be held, put down, carried, sung to, read to, backs rubbed, didn't want to be touched. it.was.awful.

Somehow we magically made it through lunch, during which poor Finny fell asleep in his highchair.  I put them both to bed, started to make my lunch and put a batch of cookies in the oven to bake and was looking forward to sitting on the couch for an hour and just being still.  Then the phone rang, and it was the genetics counselor from Children's Hospital with Finn's tests results.

We found out that he has the dominant form of cutis laxa, which surprised us a bit since I don't have any symptoms except my heart and none of the other kids have the symptoms.  We were relieved because this form tends to be more mild, but it is also incredibly, incredibly rare as in only a few families are known to have it worldwide. So, now we need to get everyone else tested to see if we just have the deletion that causes the heart condition or if somehow things changed for Finn and that is why he has more organs involved and other issues.  This is going to be quite the ride, we already have the ball rolling on physical therapy, but now we need to be aware of other health concerns.  Only time will tell us how Finn will be impacted, but I hope that the information they have is correct and that the form Finn has is less damaging.

So fast yet so slow

Four days.  In four short days Finn will turn one.  I can't even believe I just typed that.  One.  Where did this year go?  It seems like yesterday that I was laying in bed, hugely pregnant, playing games all night long the night before my c-section.  I remember being nervous about the surgery, after all it was my fourth c-section and it was so close to Teagan's that I was scared that something could go wrong.  I remember worrying about my doctor, this was the first birth I had without my old OB who I trusted immensely and had a fantastic relationship with, and this was going to be in a different hospital as well so I wouldn't know their procedures or how everything would work.  I was also excited.  I couldn't wait to see Finn, hold him in my arms right up next to my heart.  To see his sweet fingers and toes and finally get to see the little person who I had gotten to know through kicks and squirms.  There is something surreal about those nights before a scheduled delivery, staring at a clear cut threshold of moving from pregnant to new mom that makes the night sort of magical.

Here we sit almost a year later.  It feels like just yesterday, but it also feels like we have had Finn so much longer.  It has been tough at times.  He scared the life out of me on my birthday when he had the episode that kicked off all of the testing and examinations.  That day is etched in my mind forever, there is nothing like seeing your little baby unresponsive and so very still.  I am thankful we had a pediatrician who saw us right away and who got the ball moving.  The first stop was cardiology since we knew he had a murmur, and then blood work.  Cardiology revealed a more significant heart defect than we had suspected, the same one I have although his is in a different location on the aorta and is impacting his valve a bit.  Blood work was pretty normal which was a good sign at the time.  Then Finn decided he was over the growing thing and just stopped.  Didn't grow at all, didn't gain an ounce, didn't make any developmental gains and generally he was floppy.  We called him snake boy or rubber boy because he could bend all sorts of strange ways and he never felt solid in our arms, always more like a newborn and not like an infant of nearly 8 months.  It was frustrating since he was eating like mad and not sleeping at all and the pediatrician kept telling us to feed him more even though he easily out ate my bigger kids most days.  Genetics had come up a few times in conversations with cardiology, so we decided it was time and took him to Children's Hospital.  The team there was great and immediately saw that he had some characteristics of an elastin deficiency.  The loose skin, poor muscle tone and hypermobility being key, as well as the heart defect, potentially a hypermetabolism and a few other things keyed them in to a fairly rare disorder.  We began the testing and are still waiting for results to see if we have founded which form of the disorder he may have.  It is hard because the prognosis is unknown and the range is everything from normal to fatal.  He seems healthy, happy and aside from some delays we believe he is doing well.  He is a bit behind in some areas and seems more like a 9 month old than a 12 month old so we have begun the process of early intervention to see if we can get services for physical and/or speech therapy to help him catch up and work on some of the muscle tone issues, and once we are sure of the diagnosis we will see a pulmonalogist to ensure his lungs are doing well.  This part of the year, the medical unknowns and the process we are working through has been hard emotionally, but day in and day out, that is not our focus.

Our sweet Finn is an amazing little boy.  He is bright and determined, strong willed and happy, snuggly and sweet.  He rarely cries or fusses, is quick with a smile and engages anyone he meets.  Our family is better for having Finn.  He has captured our hearts and is loved so deeply by all six of us.  Finn is fought over by the big kids, they love to kiss on him, hold him, play with him and snuggle with our easy going boy.  Teagan is his biggest fan.  She loves him whole heartedly.  She lights up when she sees him, loves to be silly and make him laugh and says at least 10 times a day "My Finny loves me!"  She loves to hug him and help him, so much so that she stole the spoon out of his yogurt today to feed him when Ryan turned away for a moment.  I love that they have each other, I was a bit sad for her when I realized that she would not have anyone close in age, but fate knew better and just 16 months later she had a buddy and a friend.

Four days.  Again so close and so far away. I cannot wait to sing Happy Birthday for my boy and help blow out his candles.  He can have the wish, I will be taking that moment to be so very thankful.

Truly Thankful

I hope everyone had a wonderful Thanksgiving with their friends and family!

We enjoyed the day at my sister's house with her family and my parents, it was a wild start and end of the day but the in between was perfect!

I am thankful for my husband who deals with my special brand of crazy and who works his rear off for our family.

I am thankful for each of the five special little souls we have been blessed to call our own.  I am thankful that we are able to be present to parent them, and that they are each their own unique little person.

I am thankful for our health and stability and that have jobs and a roof over our head.

I am thankful for friends and family who support us and hold our hands and lend an ear when we need it.

I am thankful that I do not have to worry that we have enough to eat, or that we have heat or that are safe, so many are not so fortunate.

And today I am especially thankful for Finn's continued development and growth. While he is a bit behind in some areas, others he is right one track for, because today...on Thanksgiving...my boy took his first steps! Not only did he take a step or two, he did it again and again and again and got up to SIX steps today!  So very thankful for sharing that moment with my husband, parents and sister.

I'll post the "thankful" post tomorrow

Today I am thinking...WHAT WAS I THINKING?!

It has been a crazy few days.  Ryan ended up working Monday night which totally threw off both our schedules since I teach that night too.  The Haven's EEG was cancelled for today which really was a blessing in disguise since we have been crazy busy.

Yesterday I worked and poor Ryan tried to catch a few ZZZs.  I took Gray to Cub Scouts only to find no one was there, so ran him home and grabbed Haven to hit the grocery store.  Got that stuff home and put away, kids shuffled to bed and then I sat up until 2 am working on the changes to Chapter 3 of the dissertation.  I would have made more progress if my Excel had not been going wonky, but progress was made.

The hubby let me sleep in until 9:30..woohoo.  Got up and managed another hour on the dissertation, then lunch for kids and we headed to the farm and the hubby headed to bed since he works tonight.  Farm run was rough since it was crazy windy and we drive a van the size of the Titanic so staying on the road where I wanted to be was an adventure.  Came home and whipped up a yellow cake so we can celebrate Finn's upcoming FIRST! birthday tomorrow with the family.  I, of course, decided to make a turtle shaped cake, so I have to figure out when I will assemble it tonight.  Dinner was put in the crockpot before we left, but the dial was turned from High to Low by some small person who will not admit they did it. so I am not sure what we will do for dinner!  I have sweet potatoes boiling for tomorrow and still need to make the dough for the cinnamon rolls we are bringing.  Oh did I mention I have about 2 hours more work on my dissertation!  All in all it will get done and tomorrow I will be truly thankful!

Getting in the holiday spirit

So we are gearing up for the holidays around here.  I already set out the outside decorations and just need one more thing and then we will have everything set to go the day after Thanksgiving.  I have made three kinds of Christmas cookies which are tucked inside the back deep freeze and will make at least three more kinds this weekend.  I usually make 6-9 kinds ahead and then have about 3 that I need to make the week of Christmas as they don't freeze well.  Most years we average a dozen kinds of cookies, which may seem crazy but every time I try to pare it down, someone remembers a favorite that I have to make and I hate to disappoint them. I don't mind making the cookies, while it can be a lot of work, I love the traditions we are keeping alive.  My mom always made a bunch of cookies, and I remember helping her in the kitchen and loving being a part of it all.  Now that my girls are getting older, they are helping out too and they get so happy when I call them in, assign them their task and they get to tell everyone that they helped make the yummy cookie they are eating :)

This week we have a million things going on, but the end of the week will be great with Thanksgiving at my sister's house and then a quiet Friday here at home with the family.  Then Saturday and Sunday we will rake the backyard, a HUGE undertaking, but the three big kids can help and hopefully it will all get done.

Now I need to get back to my busy day.  Babies are napping and so is the hubby who is working tonight to help out a coworker (overlapping with my teaching at PT school, THAT will be interesting!) and I still need to finish making the chicken and wild rice soup for tonight and some biscuits to go with it.  Oh and the bathroom needs cleaning, just being honest :)

Mundane

Life has been full lately.  Work calls.  Science Fairs.  Basketball practices.  All those little things that add up when you have a brood of kids, plus all the cleaning and cooking that takes place daily.  I have been appreciating the mundane, it distracts my mind and does not allow me to have extra time to Google and research the medical journals.

Still no news from genetics.  The poor receptionist was so sad when she had to tell me this week there were no results yet, I think she could hear my angst on the phone and did not want to be the bearer of bad news. I get it, it is a process, but I am still having a hard time waiting.  The funny thing is, even when we get the results, it doesn't mean we will have any more information.  I mean, we know he has this disorder, the tests may or may not tell us which form, and even if it does, there is so little information we still won't know his prognosis.  Yeah, so I am waiting and stressing for no real reason since I won't learn anything new.

I am looking forward to Thanksgiving.  The small reprieve from work Thursday followed by what I am hoping will be a quiet day Friday laying around watching movies with the kids.  Fingers crossed I can avoid a cleaning frenzy :)

Just cook

So when I am overwhelmed or stressed I cook and bake, which is funny because when I am overwhelmed and stressed I can't eat.  Basically in this situation, the family totally benefits from elaborate homemade meals and baked from scratch goodies.  Two days ago it was cranberry, white chocolate, cinnamon bread for snack and crab cakes for dinner, yesterday it was from scratch chocolate mint brownies and lemon chicken.  There is something about cooking and baking that is calming to my soul, the act of putting all these pieces together to make something delicious is very satisfying.  It speaks to the control freak I am, when I cannot control a situation, I find something I can have total control over and manipulate into what I want it to be.

Oddly enough I have not begun the holiday baking.  Usually by now I have at least four kinds of cookies tucked away inside the freezer (I make a bunch that freeze really well ahead) and have my list for the last 8 or so kinds and the schedule.  No list has even been made yet, and no plan to start baking.  Maybe I will find inspiration later this week, or maybe we will just not have a dozen kinds of cookies this year, I will have to see how everything turns out.  I have purchased about 75% of the gifts so that is a relief, but this year I am having a hard time getting ready for the holidays.  I can't seem to wrap my head around the fact that Thanksgiving is only two weeks away, it just seems unreal right now.  I have become one of those people with that far away stare when they are out and about, glazed over and huddled deep inside myself, the holiday spirit may be hard to drag out this year but somehow it will happen and I am sure no one will know the internal struggle it took to achieve holiday magic.

Songs

I associate a lot of life with certain songs, as I am sure many people do.

When I think of my husband, I think of "our" song that we danced to at our wedding and many nights in our first apartment when I was expecting Haven and scared out of my wits.  That song is "Yours" by Blues Travelers.  Every time I hear it I smile, knowing that even nearly 12 years later, I know that I can put it on and he will dance with me and the world will melt away.

Each of my kids has a song that I sing them regularly, "Good Morning Starshine" from Hair for  Haven, "Where are You Going" from Godspell for Brittan, ""Sweet Baby James" by James Taylor for Gray (although I change it to say "Sweet baby Gray") and "Castle on a Cloud" from Les Miserables for Teagan (I change the name from Cosette to Teagan). But for Finn we always sang one of our repertoire, sometimes "Edelweiss" or "Your Are My Sunshine"-the extended version, but nothing ever fit as his song until now :)

Lately the song "The Story" lyrics speak to me when I think of my sweet Finn.  I have to remember that no matter what, regardless of the hurdles we face with him, he was meant to be mine and he is perfect as he is.  The song makes me cry, but in a good way, because when I hear it I know there are no mistakes in life and that I was meant to be his mama and he was meant to be my little boy, and together than means more than any diagnosis or test.

Finding the peace today with it all, it may only last the day, but I am doing what I can with what I have.

Guilt and Fault

I have been avoiding coming here, writing here, because I am afraid to say too much, share too much about how I am feeling right now.  Blogging has always been a good outlet, a place to put it all down, but I never dealt with the strength of emotions that I have right now, and I have been unsure of how to process it all.

I am terrified.  I am terrified for what is to come and what it will mean for our family.  I don't know if I can do a lifetime of waiting for the bad to happen.  I don't know if I can deal with waiting for my baby's lungs to fail, and then have to wait and hope for new lungs for him.  How do you do that?  How do you wait and hope for something that has to come at the expense of another?  How do you prepare for a future that may hold that kind of distorted hope?  I don't have patience, I need to do something, try something, fix something, but this situation I can't.  If we get the best case scenario for Finn we will still need to wait to see when his heart needs to be repaired, wait to see if he gets emphysema, wait to see if any other organs have issues or fail.  It is terrifying.  I have researched, read, reviewed every article I can on the disorder they think he has, the positive and negative of access to a university library system.  It is never good news.  The incidence of this disorder is so low that there is minimal data which means we have no idea what will happen long term.  Terrifying.

Then there is the guilt.  The guilt sneaks up on me in my long rides to and from PT school.  All that time in the car thinking about this sweet little boy of mine and what the future holds leads me straight to guilt. Why my Finny?  I cried when I found out I was pregnant with him, is that why?  Teagan was only 9 months old, I had just been told I had to rewrite part of my comp exams for my doctorate and I cried.  I was trying to find my footing as a mom of four and then five was coming.  I was scared, and worried and so cried and wished the test wasn't positive.  I was selfish and didn't want to be pregnant again so soon, lose my body for 9 more long months and then face another year of nursing.  I cried then, and now I cry for the guilt I feel for ever thinking that our lives did not need Finn, that he is not exactly what we all needed.  I think, on those long rides, was it because I was not happy he was coming?  Am I being punished for that? Am I being punished for choices I made years ago? Why my Finn, why is he going to have to deal with this if I was wrong?  He is an innocent happy baby, why is he paying for my actions?  Oh how the guilt comes in and takes over on those rides, the tears come while I am alone and no one can see and when I pull in the driveway it takes all I have to push through the door to face this life that is terrifying me right now, but I do.

Change for us is coming.  We are standing on the line right now as a family, hands held tight, one force ready to take this on.  We will change our entire universe for this boy, we will move, quit jobs, do everything we can to help him.  When that phone rings and we get results, it will be a new life for all of us, a new reality and focus.  When we find out, guilt will need to be banished so we can gather our strength as a family and fight for our boy.

I lied

OK, I meant to post more but I really have been busy...sorry to the one person who checks in here :)

So anyway, kids had a great Halloween.  I wasn't home since I teach that night but they looked super cute and they came home with a load of candy, so I call that a success.

I am almost 2/3 of the way through my Christmas shopping for the Fab Five.  I cannot express how happy that makes me.  Having all of the "stuff" tucked away early allows me to actually enjoy the holiday season, so by the end of this month I want each and every item off my list.

We are still waiting for Finn's test results and I am all out of patience.  It has been 7 weeks today and I just want to know what the findings are.  We talked to the genetics counselor and she told us to be prepared for more testing after this round, so we may have more waiting in our future.  Of course, being proactively crazy, I used these last 7 weeks to obsessively research the conditions they are testing for.  The hard part is that the best case scenario is his current heart condition and eventual surgery, his low muscle tone (which will mean various therapies in the future) and a high likelihood of his lungs being impacted and him suffering early emphysema.  This is the good outcome, so you can only guess what the worst case scenario is.  I am focusing on the here and now.  Now he is a smily, happy, easy going baby.  Now he is meeting most milestones on time or only slightly behind.  Now he lights up when any of us walk in the room.  Now he seems healthy and he is growing well.  Now is what matters.  However....should his results come back less than desirable I plan to sell our house ASAP for whatever we can get and move to the country where we can totally focus on family and not have our crazy work schedules.  Just saying, I have one foot out the door because I will not waste one more second on the trivial should something really be wrong.

OK, that is all I can spew today, off to play with my littles!

Just the beginning

Oh how I love Fall.  There is something about the shorter days, the crisp air and all those pumpkins and apples that make me swoon.  When Fall begins to really hit here in Virginia, like it has this week, it makes me almost giddy.  Even though we had a long week full of sick people and no sleep, the air has gotten brisk and I can feel it coming...my one true love, winter.

Fall is great because it reminds me of growing up back in NY.  The smells, the rituals of the holidays and the simpleness of it all makes me feel all warm and fuzzy. Fall then gives way to Winter which is my favorite time of the year, hunkered down in a house with a roaring fire, baking bread and my favorite people...throw in snow for a super bonus!

We have begun welcoming Fall this weekend.  Today the kids and I did a big clean then we broke out the Halloween decorations and even went out to pick up some extra decorations.  Teagan is that great age where she is super into the holidays, so we went a bit overboard decorating the inside of the house, but she is beyond thrilled screaming "My Hallo-eeeney" when she sees everything.  I also made the kids cookies and let them frost them with orange icing and decorate with Halloween sprinkles...they had a blast.  I have been baking more this week and today made a batch of dough that we will use to make pizza pockets for dinner.  Tomorrow will be our first real Fall feast with roast chicken, stuffing and acorn squash for dinner and then apple turnovers with pumpkin ice cream for dessert.

Bring it on, the crunchy leaves, the cool air, bring me Fall so we can get to Winter!