Do Carpe Diem; or how I learned to stop making Mount Everests out of Molehills

There has much ado about a recent article on parenting entitled, “Don’t Carpe Diem” by Glennon Melton. And while the author and the majority of those that resonated with her essay made some sobering and honest view points about their parenting experiences, I guess overall, I found the end result rather bleak. And its not just because I have lost a child, but of course that didn’t exactly help my reaction still being in the thick of the grieving process. It’s because I felt that all of the brutal honesty amounted to just that………there was no want or need for resolution. There was a resounding quality of accepting that the days are long, that the frustrations you have with your children are unfixable, that you are stuck in this mode of what she terms “chronos” time, climbing up Mount Everest, that you will only have a couple of “kairos”, or beautiful happy moments a day that will vanish quicker than they came, and that you wont even remember them, you will just remember you had them. But somehow those foggy moments were so powerful that makes it all worth it?

I have always been the kind of person that welcomes change, and especially the kind of person that creates change especially when things are stagnant, stale, old and just plain not working. I recently read this book called “The Happiness Project.” I have an extremely high respect for the author, Gretchen Rubin, who embarked on a yearlong journey to, well, be happier. One of the most profound statements in Rubin’s’ book, that is grossly missing in Melton’s’essay, “Don’t Carpe Diem”, hit me of over the head with a mallet: “One April day, on a morning just like every other morning, I had a sudden realization: I was in danger of wasting my life.” Melton never addresses this concept. And although I was not surprised by Melton’s refreshing admittance of how hard it is to be a parent, I was shocked at how willing she was to just accept it.

Rubin states:

What do I want from life, anyway” I asked myself. Well…..I want to be happy.” But too often I sniped at my husband or the cable guy. I felt dejected after even a minor professional setback. I drifted out of touch with old friends. I lost my temper easily I suffered bouts of melancholy, insecurity, listlessness, and free-floating guilt…….. I had everything I could possibly want-yet I was failing to appreciate it. Bogged down by petty complaints and passing crises, weary of struggling with my own nature, I too often failed tocomprehend the splendor of what I had. I didn’t want to keep taking these days for granted. The words of the writer Colette had haunted me for years: “What a wonderful life I’ve had! I only wish I’d realized it sooner.” I didn’t want to look back, at the end of my life or after some great catastrophe, and think,” How happy I used to be then, if only I’d realized it”?

I guess the writer Colette was her little old lady at the grocery store reminding her to carpe diem.

Rubin dedicates a whole chapter on parenting. She also mentions those chronos and kairos moments that she calls fog happiness, “Fog happiness is the kind of happiness you get from activities that, closely examined, don’t really seem to bring much happiness at all-yet somehow they do.” She uses the example of a host at a party. You are so busy hosting that you don’t even take the time to enjoy your own party. But she feels that you should take that time to enjoy it. She, for all intense purposes, wants to lift that fog and see more clearly, she wants more kairos moments, she wants to carpe diem, as opposed to “Carpe a couple of kairos moments…good enough for me.”

Rubin goes on to say

“I knew I didn’t appreciate enough this fleeting time in my children’s’ lives. Though the stages of diapers and dress-up clothes and car seats seem interminable, they pass quickly, and too often, I was so focused on checking off the items of my to-do list that I forgot what really mattered.” She begins to change many things to create,” a peaceful, cheerful, even joyous atmosphere…I had two healthy, affectionate little girls, and I wanted my actions as a parent to rise to the level of that good fortune…I wanted to be more lighthearted. I wanted to take steps to preserve the happy memories from this time.”

Now this is the attitude and energy that I want to achieve, to aspire to, especially after the extremely hard and difficult two years we have just been through. It has been very easy for me to slip into a mode of anger at the world, and sometimes critical extreme judgment towards most other parents who thank goodness don’t know how hard it is not only to lose a child but to live an entire year in utter fear, turmoil and horror; but I don’t want to settle for that. I want to do everything I can so that my life, my daughters and my husbands life don’t slip away, and all we remember is the grief of what happened. At the twilight of my life, I don’t want to be the old woman in a grocery store that only remembers how hard it was, “yea you think your life is rough, I only have memories of my sons death, and that year we spent living in a hospital, oh wait oh yea I think I had another kid too and I think I had a couple of kairos moments but I don’t remember them.” I COULD easily be that person, if I CHOOSE to hold on to the bad moments and just blindly accept that life is hard. BUT, I want to create beautiful memories that I clearly specifically can recall. I want to feel full and enriched not just for my daughter’s sake but also for my own. I want to have way more awesome incredible gorgeous fun exhilarating memories than frustrating angry sad ones. And most importantly, I want to give my living child those good memories of her family life.

The big hole that lurks in Melton’s essay is that if you are having mostly chronos moments, guess what, so are your children. Parents think if they are working hard, immersed in their children's lives, giving their children everything that they didn’t have etc. that their children will be happy right? Children are extremely perceptive. They learn most of their behavior, coping skills, and attitude through modeling. I will never forget when my daughter started sighing “ahhhh” after every swig of her drink. It always cracked me up and when I asked my husband I wonder where she got that, he said,’ "well from you of course. You do it after every sip of coffee you take in the morning.” I actually had no idea I did that. After that I became more aware of my behavior and realized that old “monkey see, monkey do” saying is all too relevant when raising kids. If you are frustrated most of the day, by looking at the clock and waiting for the moment that your kids go to bed, your children will follow suit. What are we teaching our children if that becomes the daily goal? Get the kids to bed so we can collapse on the couch and watch junk TV. Is that the attitude we want to instill in them when they go out in the world? When they go to school, when they get a job, when they get married and settle down and have a family of their own? Do we want our children to just accept a life of mostly chronos, to gaze at the slowness of the clock all day and wait until the most important part of the day has ended? Are we unknowingly teaching them that the goal in life is to stare down the time we have on earth and heave a big sigh of relief when we are at deaths door. When someone asks us if we loved life will our response be, "no....but I love having lived." Or do we want them to learn how to handle adversity, in a positive way. To strive to be happy, to live a rich life full of mostly good moments that they will clearly remember, treasure, and cherish and to pass that goodness on to the next generation.

Furthermore, what kind of “treasure house of memories”(Rubin) am I creating for my daughter? Do I want her memories to be of a cranky upset mom, who looks sad and frustrated all of the time? Who gets impatient and angry waiting in lines, or in traffic, or at my grandchildren? Melton says she has a few kairos moments a day but doesn’t remember exactly what they were whereas Rubin realizes the “importance of keeping happy memories vivid.” Remembering the specifics, the details, is not only important to Rubin’s happiness but to the overall happiness of her children, and of her children’s future memories.

Now I am not saying I don’t have those Chronos moments. We just had one this morning. Complete and utter melt down. My daughter did not want daddy to leave to go to work on a project. It was the weekend after all. “Why are you leaving daddy?” She screamed, not letting go of daddy. I used every trick in my book; distraction, choices, you name it nothing worked. I had to resort to tearing her away. After daddy left, I kneeled down and told her it was ok to be upset. I know how much you love daddy and how much you miss him. After she calmed down a little I told her, we have two choices. We could sit around all day and wait for him to come home, or we can fill our day with fun and excitement and adventure. We called some friends and they were available so we went out to lunch, rode on a train, played in a park, and then suddenly hours zoomed by filled with kairos after kairos after kairos moments. No looking at the clock counting down the moments until my daughter goes to bed. After all time flies when you are having fun right? An incredible teachable moment and one that I hope my daughter takes with her so later in life when things don’t go her way, she can turn a sour moment into a sweet one. When we got home everyone was in a good mood and daddy and daughter got to spend some time together and it was that much richer. I CHOOSE to have more kairos moments a day. Even in that excruciating line at the grocery store…I choose to play with my daughter instead of perseverating on how slow the check out clerk is or if I am by myself I always bring a good book to read…ten minutes to someone else looking at the clock impatiently is a lot different to someone else who is diving into a good book, suddenly you’re at the front of the line wishing the line was longer. That is the attitude I want to impart on my child. After all, I want her life to be easier not harder and the less she sweats the small stuff and the more she uses her time wisely the happier she will be. One of the best ways to do that is by modeling that behavior in you. I do whatever I can to turn those chronos moments into kairos ones…. kind of like the old saying “When life gives you lemons you make lemonade.”Surely easier said then done, but I am at least trying in spite of the tragedy that is still all too fresh in my mind. At the end of the day having a multitude of kairos moments that I remember in great detail, and just a few chronos moments that I know I had but don’t remember. Now that for me is success.

Melton also mentions one of the kairos moment she had was when she looked up and truly saw her daughter for the first time in that whole day. That is a beautiful moment but I say do it sooner. Make that your first moment of the day, not one of your last.

My favorite part of the day is waking up. Staring into the wide eyes of my daughter, scooping her up in my arms, feeling the warmth of her breath on my neck as she squeezes me back. I start my day every day with a beautiful wonderful kairos moment. When you start the day like that, I can guarantee that you will not only be more inclined to have many more kairos moments throughout the day, but you will remember them, not just the feeling but the specifics, the details. And so will your children. And those are the memories that THEY will remember for a lifetime. Take it from me; I am not the little old lady in the store remembering from afar. But I know at an extremely early stage in my parenting life that you should relish these moments, and try and change your life and attitude so you can have more of them and so instead of looking forward for you kids to go to bed, you are looking forward to spending quiet time with your significant other; to me, there is a huge difference between those two attitudes. Don’t wait for something tragic to happen, or for you to grow old. These moments do go by fast. Too fast for me and unfortunately too short-lived. Carpe Diem.

These are the days
These are days you’ll remember
Never before and never since, I promise
Will the whole world be warm as this
And as you feel it,
You’ll know it’s true
That you are blessed and lucky
It’s true that you
Are touched by something
That will grow and bloom in you

These are days that you’ll remember
When May is rushing over you
With desire to be part of the miracles
You see in every hour
You’ll know it’s true
That you are blessed and lucky
It’s true that you are touched
By something that will grow and bloom in you

These are days
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you’ll know how it was meant to be
See the signs and know their meaning
It's true
Then you’ll know how it was meant to be
Hear the signs and know they’re speaking
To you, to you

-10,000 maniacs

D-day: storming the beaches of normalcy

Its hard to believe that a year has passed since I wrote this blog, and this day is very painful for me and my family. Today is the day Thurston should have been born, and had he been, we would have been celebrating his 1 year birthday. Instead, all I have to look back to are memories of this horrific last year, and all we and he went through. Here is my blog post from last year, and I can guarantee that this day will always be D-day for us and we are still continuing to "storm the beaches of normalcy".

June 4th 2010

"D-day: storming the beaches of normalcy!!!! 13 weeks actual 40 weeks gestation 1 day old adjusted

Yes today was the day, the day that my sweet boy should have been born. Due date day I will aptly nickname D-day. And boy has he been at the frontline of a battle, the battle for his life. His prematurity a nazish nightmare, an invasion of a full term pregnancy. So we continue to storm the beaches of normalcy. To try and find some kind of peace with our reality. It is today that the NICU will start counting his "adjusted age". So he is 3 months old actual, 1 day old adjusted. I cant believe he left my womb so early. I am feeling the mental duress of all of this. Today I did break down as one would expect. I should have been in a hospital room full of flowers and well-wishes with my sweet boy and husband and daughter snuggled up and warm, instead I am sitting here attatched to a pump, my sweet 2 year old daughter by my side watching Max and Ruby, my beautiful son, being seen by a pulmonologist to tell us how bad his bpd is and what the long term prognosis will be. I just never thought I would be in this situtation. It is one of those things that you only thought happened to other people. But I would never want anyone else to go through this. It is simply to painful for words."

Epilogue: Modern Prometheus, and Pick yourself up, dust yourself off, start all over again,,

So I have too many thoughts racing in my head I think I almost need to make this in parts. The first are my philosophical thoughts and feelings that this situation has left me in and the other how we are doing just a mere week later.......

First and foremost I would like to thank everyone for the most amazing support any family could possibly receive during such a painful time. We have received meals every night, I have read the most amazing and incredible emails, text messages, phone calls, and well wishes. Someone from my preemie web board sent the most amazing collage of pictures of Thurston that they had made with my favorite quote, I cant even believe the generosity and kindness from people I know and love and people I have never met. I also received an email from a paramedic from New York City who endured 9/11 who told me how much hope Thurston had brought back to her, that just blew me away. This process has truly made me a better person, and has imbued me with more hope than I ever thought possible. I want to thank all of you from the bottom of my heart and I cant even begin to tell you what your kindness and thoughtfulness has done for us. That instead of feeling jaded and sorry for ourselves, we feel empowered and grateful and without all of you we would probably have been in a very different place.......

On this very long painful journey, it has been hard not to think of one of my favorite novels, Mary Shelley's' Frankenstein; or, The Modern Prometheus. If you know the story of Prometheus, then you know that basically he created mankind from clay and played many tricks on Zeus(God if you will). He stole fire and gave it to human kind(much like the apple and Eve story) and therein sparking humans to move forward in science and creativity. One of the greatest themes in Frankenstein is how far is too far is science tempering with nature? How far should we really go?

I have often thought about why they would save 1 pound babies, especially my 1 pound baby, who had less of a chance of survival at 27 weeks than a 23 weeker because he had IUGR and was very compromised and stressed already in utero, starved of nutrients and oxygen and not growing because of it. It is definitely still a gamble that doctors, that society, plays with these children who have only percentages to go by and Thurston's chances of survival according to statistics were less than 17 percent if you went by his weight.

Here is where Thurston's chances get murky. Thurston weighed what a 23 weeker usually weighs. So basically he truly only had a 17 percent chance of survival. However he was 27 weeks so you would think, well then he has a 90 percent chance of survival. But the doctors all told me as well as the obgyn, with Thurston who was already sick and compromised in the womb he probably was closer to that of 23 weeks, perhaps even worse. There are also charts that depict the chances of morbidity and disabilities which are I think even harder to quantify but Thurston had an extremely high chance of severe disability and severe medical issues. I will never forget the day Chad and I sat down with the doctors and they had told us that his chances of blindness, severe lung disease, cerebral palsy etc. were so much higher than that of even a normal 23 weeker, he just was such a sick little guy.

I have gone back and forth this last year about thinking if we should be saving these babies, I guess when you fall on the negative end of the percentages and you watch your child suffering endlessly day in and day out, being hooked up to so many machines and enduring surgeries and endless drugs in order to survive for more than a year, there is no way you cannot question; is science intervening where it should not? Was my sons suffering worth the "gamble" that obviously in the end did not pay off and by that I mean not only did he not make it, but he truly suffered greatly, especially in his first few months of life, in August and especially in the last few months of his life. When I was a special education teacher, I often tried to put myself into my students bodies. I thought what would it feel like to have their medical diseases, their aches and pains, their fragility. With my son, every day I couldnt help but imagine how it would feel if every breath I took was a struggle. I imagined it may have felt a lot like having bronchitis or even pneumonia every day for a year. I went back even just thinking about my c-section and how painful that was to recover from and thought about his surgeries and I thought, how can this little being endure so much pain and discomfort let alone how scared he must have been(I saw it on his face) of not knowing what happened to him. I imagine what some medications felt like and all of their side effects, dizziness, nausea, bloating, light headedness, headaches, you name it just think of any medication you have had to take and remember all the side effects and times that by 12-15 a day several times a day. Let alone all the needles, pic lines, ng tubes, loud noises, being woken up constantly right after you had just fallen asleep.....I just cant even begin to imagine

I often go through and think was his painful life worth it? Who is Thurston ultimately here for, us or himself? I know most of you may not agree but if I had a choice, I probably would have preferred that he died in utero when they said he was supposed to. Yes that means that I would have never got to meet him, got to see his sweet smile, got to witness his incredible perseverance, his formidable determination, and I would have been bereft of many of the wonderment that he brought to my life, however, as I have said before, Thurston was not here for me, he is his own person, and watching your child suffer so much, I would have to say that I would trade all of the beauty that I received from him to never have had him hurt so badly everyday of his little life.

Having said all of that he must have wanted to be here for some reason, he fought tooth and nail and lived way beyond all of the doctors expectations. According to one doctor he shouldn't have even lived one day let alone 380 even with all of the medical interventions. I am still left with more questions, than answers, more queries than results, more curiosities than knowledge, more pain than relief; I doubt this passage of my life will ever truly have a neat and tidy ending, it will always be open ended replete with uneasiness and doubt.

The flip side of course are all of the preemie babies who not only made it out, but with very minimal damage in the grand scheme of it all. Yes of course they have issues, I think most have eating issues, and some will unfortunately have life long health issues, but most are doing pretty OK and have a great shot at a happy and fairly pain free life, and that is all anyone can truly hope for for their children. So obviously, for those families the gamble is definitely worth it all and I am truly so happy for all of my wonderful friends and their beautiful babies............

The first few days after Thurston passed I was a complete mess as anyone would expect. His last week he was not doing that well and it was truly painful to see him so sick. The hardest part was when his sweet little body was taken to the funeral home. I curled up in a ball on the couch, I couldn't breath. It seemed like a horrible nightmare and all I wanted to do was wake up..........

After a couple of days I kind of shook myself as if there were two of me. One of me was shaking the other to snap out of it. It said, "you still have a beautiful daughter, you have wonderful memories of your son, and you need to move forward". I realized that unlike someone who suddenly lost a healthy child, Chad, Viola and myself have been literally grieving for over a year now. There was not one single day that I did not tear up in this last year, not one day where I did not grieve for my child. After the event in August, I think I even knew then how fragile Thurston was and I knew that there was a very very high probability that he could die. Even after the trach, although I was hopeful, I knew that even if he caught a cold let alone the flu, that it could possibly kill him. In a strange way, I was prepared for his death I guess, unknowingly.

I have always gained strength from others and the oddest thing is that Thurston's birth and death were bookended by two very horrible natural disasters: Haiti and Japan. When he was first born I kept reading and seeing horrible images of Haiti and I imagined how horrible it would have been, how some people lost their entire families, their homes, their friends, their villages and I realized we are certainly not the only people in the world to suffer, to experience tragedy. Now I think of all of the people in Japan who are going through the same thing. I grieve with them knowing only a little of what they could be possibly going through. It is a strange coincidence that I have had these two tragedies to look to strength for and to count all of my blessings in my life.

There is also a woman who I have never forgotten whose husband was killed in a horrible college shooting and then 6 months later, one of her children was run over and killed by a car. I remember her in the news and when people asked her how she was coping, how she was still standing I remember her saying that she still had so much to live for, that she still had another child to be strong for, I remember thinking what an amazing woman she was with tears streaming down my face. She has never left my thoughts and now I think about her with even more amazement

http://www.signonsandiego.com/uniontrib/20060824/news_lz1e24diaz.html

This week we took Viola to an improv Theatre, one I had taken to her before Thurston was born, and she had a blast. Her life completely vanished this last year too, and I not only grieved for my son but for my daughter as well. She has been the most amazing and patient little girl and truly put up with a lot, going to the hospital on a daily basis, me pumping 6 to 8 times a day for an entire year, me crying all of the time, etc...before all of this our lives were jam packed with library visits, playdates, parks, theatre, art, music, jumpy gyms etc......we truly had something going on almost every day. I want to get back to that and although there is a part of me that will always feel guilty for moving forward which I am sure is a very normal part of grieving for anyone, I must do it for my daughter who deserves to have a full life. I know her brother would want her to.

There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again"..............

Baby of Mine.......

Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Thurston Keaton Mossholder

March 8 2010-March 22 2011

Thurston passed away very peacefully in his mommy and daddies arms. He enjoyed two whole weeks at home, which was more than we ever could have asked for. Thank you so much for all of your prayers, thoughts, love and support during this very difficult last year. We appreciate all of you so very much and will update you in the coming days and will be holding a memorial event in the weeks to come. We have kept a journal for visitors for Thurston while he was in the hospital and when he came home with thoughts and feelings directed to him, so if you would like to add a card, note, drawing or anything that I could eventually cut out and add to his journal we would so appreciate it. You can send them to:

3648 Spring Canyon Trail

Round Rock, Tx

78681

When he shall die

Take him and cut him out in little stars

And he will make the face of heav'n so fine

That all the world will be in love with night

And pay no worship to the garish sun.

~William Shakespeare, Romeo and Juliet

The Sound of Silence.......

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

I apologize for not updating as the last couple of weeks have been a whole lot of crazy. This will be a brief update. We got to take Thurston home on hospice on his birthday March 8th. It was a glorious day but also bittersweet as they told us that without a couple of the hospital medications, he probably would not survive the day. In true Thurston fashion, he hung on and we have been able to enjoy some wonderful moments with him, however, we have also encountered some very scary, sad and heartbreaking moments as well. Its only a matter of time and we are keeping him comfortable and loving all over him.

I also wanted to ask in the coming days and weeks that although I do not expect anyone to ever know what to say to us in a situation like this, I do have one request and that is the one and only thing I do not want to hear is the phrase"at least". "At least you got to take him home", "at least you got to spend a whole year with him", "at least he is in a better place now".......I dont want to have to smile and pretend that what you say to me does not hurt, does not sting, does not sear into my soul. I have been standing idly by watching almost everyone I know for over an entire year live their normal lives, have normal births, have normal children, and I am so happy that most people will never have to go through this very long elongated process of suffering, but at the same time it hurts so much that Thurston had to be the one to go through all of this. My son has suffered greatly in the last year, it has been horrific watching my sweet child get poked and prodded, stuffed full of drugs you cant even begin to imagine, endured two surgeries, both which left him in great pain, pumped full of oxygen that I can only begin to imagine how uncomfortable that must have been on both the cannula and the cpap, lying in a lonely hospital room for over a year where he was constantly woken up, especially in the last three months almost every hour if not more, where everyday he had circles under his eyes because no one would allow him to sleep, and I really dont feel I need to go on, you get the gist. I would also like those few people that think my son still might "make" it that as his mother, I have accepted his disease, that death is not horrible especially when you are suffering, that I truly believe it will give my son the peace that he deserves and that if I can accept it, and that if I can wrap my brain around it and that I have been with him through thick and thin and I KNOW HIM BETTER THAN ANYONE ELSE ON THIS PLANET! then I please ask that you refrain from thinking that you know more than me.....it is extremely insulting and although I am not religious, I have always felt that it is ironic that people who believe in a place like heaven are so afraid of death and according to their belief systems, death actually should bring beautiful and wonderful things to my son. Ultimately, Thurston is not on this planet for me, for Chad or for Viola. He is not here to amuse us, to bring us joy, although those are all benefits we have received by his mere existence, but Thurston is his own person, he is suffering and when he chooses to go, he will, just as he has chosen to hang on as long as he has.

This has been a trying couple of weeks and although we are relieved he is home and that he is in a better place, it has not been easy on any of us to watch our son go through this process. Right now he is comfortable and sleeping and at this point, all we can hope for is that he does not feel any pain. I have truly been coasting on autopilot, which is the only reason I am standing, almost like an out of body experience. I so appreciate all of your support, prayers and everything everyone has done for us and would like to thank my preemie moms, Candace, Beverly, Michelle, and Jennifer for their wonderful gifts and for my father and mother, both of whom extended their stays to help out in this impossible circumstance and for Thurston's Ami mommy whom I couldnt begin to even think what this experience would have been like without her.

I wish things had turned out differently and sometimes I often exist in an alternative reality where Thurston was born normal. Every day I think about what we would have been doing had that happened what life would have been like for us if Thurston had been born under normal circumstances. You never ever forget about the dream that you once had no matter how tragic the circumstances......"and the vision that was planted in my brain, still remains, within the sound of silence".......

Brothers and Sisters......

So my best friend whom I also consider like a sister flew in at the beginning of the week to help out. It was so good to see her and then I got an even bigger surprise. My Mom decided to fly back to be with us and she brought the whole crew with her, ALL four of my brothers and sisters!!!!!!!! They all wanted to meet Thurston and be with us. They are only able to stay for a day and a half. I cant even believe that they all did this. They are the BEST siblings I could ever ask for and reaffirms over and over again why I wanted to have Thurston, why I wanted Viola to have a sibling to grow up with and to have a whole lifetime of love, support, and understanding. I am so lucky to have the best family ever. My pops is also coming out at some point but is getting over an illness. He calls me all of the time and checks up on me. Family is everything to me and without them I would be completely lost. Sure we fight, disagree sometimes, have different politics, even religions(or lack thereof) but ultimately the one thing we will always always have is each other, and that is what family is all about.............Love you guys!!!!!!

holy shit!!!

Ok I just wanted to clarify that after some of the responses that we are NOT I repeat NOT pulling any plugs on our son. I guess when I was writing it came off like that was a choice we might make but we would only even consider doing something like that if he was down for the count, starting really desaturating like crazy for hours with no hope of getting back up, not able to resusitate etc. Like a DIRE situation. Trust me its not like we are walking in looking at our kicky smiley happy kid going, "hmmm should we pull the plug today or not". I know it is so hard to convey what the hell is going on in a blog and especially when my emotions are beside themselves but anyway, just wanted to make sure all of you knew that unless something really really reallly really really bad happens, obviously we are not doing anything and we are still in the meantime trying to find answers. I am SO SO SO sorry for the confusion. I guess it is similar for someone to tell you they had stage 5 cancer, I mean your not going to go in and suffocate them or something, you are just going to maybe try some of the treatments and hope for the best even though the odds are stacked against you, but know that the chances dont look so hot and then if and when you go hope it is peaceful surrounded by loved ones........ok now you know!!!!!