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!