A thought on grief....

“When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. ” - Paulo Coelho

Grief is such a complicated part of life.....we all deal with it differently and I cope best by talking about my sadness and learning from it. As I look on the past few months and what has happened in our lives,  I can't help but examine what beautiful lessons we have learned. Life IS a lesson.  My grief is still real and still strong and still palpable but I have an internal gauge on my own healing. For example....now, when I go to Target and see new mothers with their new healthy babies, I do not feel like someone just punched me in the gut - making it hard to breathe. I feel as if that is a sign that something is healing (although quite  strange, I know) or when I look at some of Finn's mementos I do not feel anxiety or panic - only peace (although there are some I have not quite opened yet).

I feel as if I am truly (one day at a time) trying to reach my new normal. I am inspired by a story of loss by Emily Rapp and her braveness. Her son, Ronan,  died of Tay Sach's disease.  She describes thoughts I have so vividly in her blog, ourlittleseal.worldpress.com:

 " I am still a mess (who isn’t?), but I am no longer hysterical, and when I am hysterical, it doesn’t lasts for hours and hours. One hour once a month seems to be the new pattern, the new normal. I am an altered person, a new person, both better, I guess, and worse, I suppose, than I once was, than I used to be. My life is not exactly the way I’d like it to be (is anyone’s? And how do we know? How would we recognize our “right life” and how long would it last?), but I feel closer to the person I’m trying to be, which is a person who is not governed by fear, even if it’s impossible, even unreasonable, not to live alongside it. Living the biggest, fullest life possible is a responsibility I believe has been given to me because Ronan never had a chance to make any decisions about what kind of life he may have wanted to live."

She has a beautiful book out called, "The Still Point of the Turning World". This book  speaks to me. Writing was her therapy in her blog and I have to agree that writing is very therapeutic (and so is a good book, I'm learning)!

I am planning to go back to work this coming  Monday. I have had many people ask me if I'm ready to return to work - When is anyone really ready to do anything? Just pick up the pieces and move forward with my chin up......although we will see how well I can do that my first couple of days. I have a supportive "family" of co-workers that the closer my first day back gets the better I feel about it. 

My constant right now is exercise and yoga. I know when I do those two things I feel better. I feel better about myself, my body and I feel as if I am better able to cope with anything....like I'm superwoman! (ok, maybe not that dramatic but it does help). I am focused on really healthy eating and taking care of myself right now and it feels really good....like something I can control....whether that is good or bad....

I will leave you with one more excerpt from Emily Rapp's blog that is so real and true to my life, "The person who loves me keeps hands that are strong but not insistent on my shoulders; hands that ask for nothing but what is unfolding; hands that truly hold. I feel, as that moment opens, so truly alive that I am surprised that the world doesn’t burst open: a perfect mix of bottomless sadness and heart-swelling joy. I am filled with a complicated hope, which may be, I believe, the essence of love." 

oh, and I can't help but give you a picture of Bernard :)  Have a Happy Easter Everyone!

Thankful

“It's easier to take than to give. It's nobler to give than to take. The thrill of taking lasts a day. The thrill of giving lasts a lifetime.” 
― Joan Marques

Words cannot express how very thankful we are for each and every one of you who donated to the Children's Heart Foundation. I received a letter in the mail yesterday with your names and a total donation amount of $3,180! The Children's Heart Foundation tells me there are even more donations coming in in memory of Finn and they will continue sending me those names. It brings tears to my eyes to know so many of you have donated in honor of Finnegan.

The gifts you all gave with help aid in the Children's Heart Foundation's mission to fund research to advance the diagnosis, treatment, and the prevention of congenital heart defects, the world's most prevalent and deadly birth defect. We couldn't be more overwhelmed with your kindness. Thank you all for giving to this great cause!

plans

Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy. ~Author Unknown


Life continues on. We think of Finn every day and miss seeing his little toes and hands and feet and face...... such a sweet face he had.  I still cry over losing Finn but there are many times where I smile in his memory. He has touched so many people and my heart fills with joy thinking of the impact he has had during his short time with us. We are so very proud in our sadness.

We had a rush of immediate family in this past week to see us. People who say family heals are correct. It was just their presence that helped us through some tough days and gave us strength to see the hard days ahead. They were here for us in our greatest need and there is no way we could be more fortunate than to call them family. They also were here to help us eat a lot of food. 

 I will say that food is quite healing as well :) We have eaten some amazing meals prepared by some dear friends here in Madison and even food sent to us in the form of gift cards by friends from far away.  This was a huge thing for us as we have not felt like cooking (or cleaning for that matter).  Our house is also full of beautiful, fragrant flowers and they bring such cheer to our home on sad days. Bernie likes to enjoy them, too...

Finn's ashes will be with us this week. We chose cremation for him and we were thinking of the best place for him to rest. We chose Yosemite National Park in California. It is one of the most beautiful and peaceful places we have ever been.  

Since our last visit to the park, we had dreams of taking family vacations to Yosemite when we had children - taking walks in the valley, hiking to beautiful waterfalls, enjoying the silence of the mountains......

Now after this important trip and in the future when we visit we know our first born will be there with us. Always.
  

Time to heal

“Our wounds are often the openings into the best and most beautiful part of us.” 
― David Richo

First day without Finn. We feel an empty void that will never be replaced. I can't bring myself to open the nursery door and look at all his sweet things yet. I know that will get easier. We are trying to keep ourselves busy and will have many of our family members visit us soon. We are looking forward to some much needed family time. Kyle's Mom has been such a support for us through this time as she has been in Madison with us. We were so glad she was here last night as a shoulder to cry on and she has been such an enormous help to us. So thankful.

We've had a lot of people ask what they can do for our family during this time. We've been thinking that the best thing would be to help medical research for babies and children with congenital heart disease as this was what we had known Finn had at 20 weeks. Knowing he had a heart problem was the first part of this journey and it hits close to home for us.
  CHD is one of the leading congenital problems in babies (close to 1 in 100) - Finn's poor little heart added a level of complexity to his life and medical care that was ultimately devastating.

 If you want to help, we would love for you to donate in Finnegan's name to the Children's Heart Foundation: http://www.childrensheartfoundation.org/donate-now  Your donations would go toward research that specifically targets congenital heart disease.

A donation would mean the world to us and we would love to have our son recognized for his strength and fight during his short time here.

Thank you again to everyone for their support.

Special moment with our sweet Finny

Sad News

“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.” 
― Leo Tolstoy

It is always surprising to me how fast things change - in the blink of an eye.
The roller coaster that has been our lives for exactly one month today has come to an end. After such good news this morning, Kyle and I went home to have some lunch and wait out a big snowstorm that was coming down on Madison today.
I got a call from one of our favorite nurses around 5:30pm. She said Finn's lungs had both completely collapsed after his bronch, he had not urinated for 18 hours, he was needing more blood pressure support and they were getting a stat echo. She said we should come to the hospital.

We dropped everything and drove in the 7 inches of snow to the hospital. The fear and anxiety in both of us was palpable - we knew what we were walking into but it just hurt to think about.

When we got there, we were greeted by 2 of the neonatologists that have taken care of Finn. The nurses and nurse practitioner were working on Finn and they all had such a sad look on their faces. After talking to the doctors and thinking about everything Finn has been through and what he faces in the future - we made one of the most difficult decisions of our lives. We decided that he did not need to suffer any more. Finn was telling us he was ready and he was tired.

Finnegan passed away on March 5, 2013 a little over 2 weeks old. The sadness we have felt is so overwhelming that it hurts our hearts. I cannot describe our grief but I can say that we are at peace knowing Finn is in a better place now and he will not suffer any longer.

We know this was not an easy night for just us. The NICU team, anesthesiologists and surgeons who worked tirelessly to save Finn's life were grieving as well. I just have to say that we are so thankful for their skills and knowledge. Without them, we would not have been able to spend the past 2 weeks and live some special moments with our sweet son.

Thanks to everyone who has sent up prayers, well wishes, good karma, happy thoughts, etc and to everyone who has sent cards and been so generous with bringing food. It for sure helped make this beautiful experience somewhat easier.

 Our son, the fighter. He will always be remembered in our hearts and we will think about him every day for the rest of our lives.

The calm after the storm

“Be faithful in small things because it is in them that your strength lies.” 
― Mother Teresa


Finn, Finn, Finn. He is the strongest little thing I have ever seen. I don't know if Kyle and I have ever experienced so many emotions at one time. It is truly exhausting.
He did so well with the bronch that the doctors came back smiling. They were able to suck out a giant mucous plug in his left main bronchus that is now hopefully going to allow him to breathe better. I have no idea how he does it but little Finn has the drive of no baby I have ever seen (I may be a little bias).

Before the procedure - because we did not know what the end would bring - the nurses allowed us to pick Finn up and hold him. I could not stop kissing his little swollen head and holding his little swollen hand. I knew it would be but it was one of the most emotional and special times of my life. I will never forget it.

He still has a long way to go but we will take today's  news and hold onto it as long as we can. One day at a time....he is our little miracle.

*sigh*

When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe 


Here we are again - the saga continues.  Finn has had a difficult last couple of days. He has a completely collapsed left lung full of mucous. He is now on the highest amount of oxygen he can be on and his oxygen saturations are marginal. They tried to break up the mucous with medications that have, so far, been ineffective. As an almost last effort to help Finn, the surgeons will try to bronch Finn (put a camera down to look into his lungs and wash out the mucous plug). This procedure comes with many risks. Finn is so swollen at this point that they are afraid they will not be able to get his breathing tube out, put a camera in, then put another breathing tube back in. If Finn loses his airway, he loses his fight to be in this world. I can hardly think of it.

Kyle and I are continuing to stay positive. We are optimistic that tomorrow's procedure will be successful. The surgeons who are working with him are so skilled and they have already saved his life multiple times. We are so happy to have such an experienced medical team on Finn's side.

Tomorrow at 8am is the time for this procedure. Hoping for the best and continuing our cautious optimism that tomorrow will bring a good outcome for our sweet Finnegan Andrew. The battle seems to be moving more uphill but we will continue to fight for him.

The nurses did arts and crafts with Finn last night. His color is a little off from the camera but I still love this keepsake.

Grow baby, grow

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” 
― Albert Einstein

Here we are again. Having trouble with the ventilator. Little Finn is having a bit of a rough morning but the Doctors are quite optimistic that once we get over this hump he will be able to be left alone again and continue to grow. We continue to be optimistic he will, once again, persevere.

This weekend, Uncle Heath came to visit. He has been such a help with keeping us distracted, keeping us laughing, and keeping our heads on straight (mostly my head). It is difficult being in the medical field and not paying attention to every detail of Finn's care. After a day like yesterday, I have learned that it will cause me to go insane. Kyle said it best when he told me that I am not a nurse right now, I am a Mom. That brought me a good prospective and I have been trying not to dive into every detail....it makes the ups and downs so much more severe when I do.  I tried a new angle last night and just let go a little bit from my control-freak tendencies and let the nurses call me if there was a problem. I slept so much better that way. It takes a lot for me to do this but it did work. Kyle and Heath were right :)

We continue to have food delivered to our house from our friends and family. It continues to be a helpful relief than having to worry about what to eat. We have gotten everything from Chili by Kari, beans and ham by Ann,lasagna by Vanessa, Mac and Cheese from Neil, and a whole roasted chicken from Deb! I am 100% sure the food we have frozen will be a huge help when Finn comes home and in the months to come. Couldn't be happier with everyone's generosity (and Bernie likes to try and sample all of the cuisine as well).

Kyle's Mom will be coming up today and staying with us through the week. We are looking forward to seeing her. As the neonatologist- Dr. Pillars- said today, "it is time for Finn to get better". I agree.

Encouraged

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

Little Finn is holding his own today. He has been able to sleep almost all day and has had very little stimulation - which he needs in order for his brain to develop and to decrease stress. I had the best morning. The nurse let me pick him up while she changed the linens in his isolette (and she included a stylish bamboo number I brought that smells like me :) ) . I was beyond excited to do this! He had his eyes open and we just looked at each other for a while. I'm not sure what he can see but he does know my voice and looks toward me when I speak. My heart just melts.

Our plan is to continue making the most of each day we have with Finn. We do not know what his future holds but we have so many special moments with him now. I love staring at his perfect face and  will just keep reading him his books and loving him.  Kyle and I read so many things about preemies and there are many studies that show better outcomes when both parents are involved with their preemie. We will hold onto that and keep our chins up knowing we are doing what we can for him.

I heard a song today on the way to the hospital that brought tears to my eyes -  it was so appropriate for our current situation: it is an older song by Sara Bareilles called, "The Light". Part of the lyrics say:

Nevermind what I knew
Nothing seems to matter now
Who I was without you
I can do without.

No one knows where it ends
How it may come tumbling down -
but I'm here with you now. I'm with you now