Wednesday, December 31, 2014

Surviving the Holidays


Prior to the holidays of 2014 arriving, our amazing Grief Share support group hosted a “Surviving the Holidays” special class to prepare us, support us, and teach us how to handle the holidays with our loved ones in heaven. While others are happy and joyful,  we just attempted to breathe through them. It’s true, holidays are a very special time of year....for most. The holidays are a time to unite with family and friends, share great food, exchange thoughtful gifts, and enjoy each other’s company. That’s the case for everyone who hasn’t lost someone very special in their personal and everyday lives. In the journey of grief, the holidays can mean family and friends not asking anything about our loved one who is now in heaven, having the burden of making food, not buying gifts for the angels we want to buy for, and sending cards all without our loved ones name on the “From” part of the package, preparing food they cannot eat, and sending a picture that does not include them. It’s work, not relaxing. It’s hard, not enjoyable. It’s painful and not fair. It’s a whole new level of hard.

 While sitting in this “surviving the holidays” class, the amount of mourning that went on is like nothing I had ever seen. Every single widow or widower, now single siblings, or childless parents were in pure agony. We all wanted to skip over this time of year. It was another unwanted set of firsts for us without Heather. I am thankful we weren’t alone in this journey of surviving the holiday season.

We received a tremendous amount of wise council from our grievance counselors and other bereaved parents that have walked this journey for years. Through this, we painfully learned we had to do this year our way. We needed to find a strong driven purpose for each holiday event that we needed in remembering Heather and cherishing her memory. How could we find that without her being here, or without her telling us? We found it through prayer, we found it through God signs, we found it through professional counseling, and we found it through experienced bereaved parents. 

Halloween: 

This seems silly to those who don’t celebrate Halloween, but it was something special to me, because Heather dressed up as the most beautiful butterfly I had ever seen. It was a first and an only for her. It was important to me that she was able to experience something that every other child was able to experience. The day before Halloween, I fell apart. I cried all day just imagining what Heather would have dressed up as this year. It was a hard day. However, when I woke up on Halloween morning, I woke up with a smile on my face. ????? This was new! This was prayer! This was faith! This was God! Not me. I just sat there in bed looking at Heather’s beautiful butterfly pictures from last year so overjoyed and so happy that we had that experience with her. It meant the world to me. 

We decided to pass out candy that evening. Something I wasn’t expecting to be strong enough for. The worst thing on these holiday events is to do nothing, so this was our “something” we did. 

One of our first trick-or-treaters was this sweet little 2-3 year old girl........dressed as a butterfly. What was God doing to me? I felt the tightening in my face and in my throat. I felt the stiffness in my shoulders and knew the tears were about to come pouring out.......but then nothing. I passed out the candy to the sweet little butterfly and off she went to the next house. I had to immediately go through to process what had just happened, especially since I could still feel my tense muscles. My face and throat had the tear jerk moment and I felt like the tears were supposed to come, but they didn’t, and I didn’t feel like I was holding back either. The best way I can describe it is that my body, my tear ducts, have been a waterfall of tears for most of the year. I felt that I had created muscle memory in my facial muscles from crying so much, but this time there were no tears. This time God had given me this unknown peace. It was ok. Halloween was ok. The day before was torture, but the day of Halloween.....I survived.

Thanksgiving

Last year we had such a peaceful and relaxing first Thanksgiving with Heather and our a dear friend from Children’s Hospital. It was perfect. This year......what were we to do? 
Minot Air Force Base in North Dakota holds a very dear and special place in our hearts. It’s where Heather was born and immediately flown to Children’s Hospital in Colorado. The way our Air Force squadron loved and supported us is unlike anything I had ever seen. It was true sacrifice. It was one of the most beautiful moments of our lives. 
Our close knit group of friends invited us to North Dakota for Thanksgiving this year. Thomas and I were very uncertain, but prayed about it, and learned it was just meant to be for this year. We know that moving back to Minot is a possibility for our Air Force future. I knew that it would be too hard to move back there, as much as I love it in the frozen tundra, unless we made a leisure trip first. I never got to say goodbye. I got on a one way flight and left forever. Thomas went back to shortly just to pack the house. Then, we started our Colorado life with Heather. He had a goodbye, not the goodbye he wanted, but he felt just ok with the goodbye he had to give. 

These amazing Air Force and military people all over the world understand a special kind of sacrifice. These women and children say goodbye to their husbands and daddy’s for 6-12 months at a time. Fathers miss out on child births, their little ones crawling, walking. The children have to really work to know who their Daddy’s are to remember them at such a young age. Tragedy occurs, cars break down, natural disasters happen all on the home front, while husbands are thousands of miles away fighting for our freedom and families can only speak with them when their mission is done for the day or week. We cannot call them, they have to call us. They know sacrifice, because they live it everyday. These families had so much “practice” in their own lives that they seemed to be experts to know what to do in a crisis for us.
We felt so strongly in our hearts to thank them, to go back with eye to eye contact to hug them, shake their hands, share tears, and thank them for the immeasurable amount of kind acts they did on behalf of giving us the best they could for us to spend with our daughter in the NICU. Even in doing a formal thank you, “thank you” will never be enough for us to give back to them.  We needed our “goodbye” and what we got in doing this was also closure. It was emotional, it was painful, it was healing, it was needed. 

Our final peace that set in was when we drove away from our nine month home. As we waived goodbye to our special Air Force Family, the sky was pink. It was such a special God sign that Heather’s light would always shine in Minot, ND. Heather’s life started there, it’s where I became a mommy, and where Thomas became a Daddy. It’s what we needed and it was one more step forward in our healing process. It was so hard, but.......we survived Thanksgiving.

Christmas:

I’m sure I won’t be able to get all my thoughts down as this is something I am still processing through. This was a whole new level of hard because it’s also so close to Heather’s birthday, January 1st......

The week of Christmas was just awful. There is no sugar coating it. I cried all week. I really struggled with this holiday the most. We set up some Christmas decor, including the tree. We didn’t set up all our decor, we just didn’t have it in us. Thomas actually did most of the decorating and took charge this year. I was so thankful he did. As we set up our tree in tears, we knew, for us, it would be harder to not have a tree than to have one. The tree was a big topic in grief share. There were so many families that just couldn’t put their tree up. Their tree consisted of all their children’s ornaments over the past many years, memories of them putting up their tree together, the traditions they had as a family, and so on. It’s painful, but necessary to go through.  For Thomas and me, it wasn’t the same as what others felt. We loved watching Heather’s eyes amazed by the tree lights. I loved watching Heather watch her Daddy put on his Christmas hat while placing the star at the top of the tree. I loved Heather’s awe of this giant bright object in front of her. I felt that if we set our tree up this year, she was looking at it from heaven just the same. It was hard, but if we didn’t face the hard this year, we would have to next year. We needed these hard emotions to go through now, so next year, our baby boy on the way could have a very special Christmas next year all about him. 
While decorating the tree, I cried the whole time. It was intense. I took Christmas cards off my list, baking, and heavy cooking. It was too much. I am thankful I didn’t feel guilty about not doing any of those things, and Thomas was extremely supportive. Thomas and I decided to not do gifts for one another, just stocking stuffers. There is something about becoming a parent that makes you feel like you’ve been given absolutely everything. If the role of parenthood made us feel that way, what could Thomas possibly buy me or I buy him? Last year, on Heather’s first Christmas, the tree was FULL of gifts for her. It was my very best Christmas. I loved helping her open all her gifts and watching her was one of the biggest gifts I had ever received. 

Our Christmas Eve church service was a continuation of tears as we listened to “Breath of Heaven” with all the other Christmas classics. Our pastor approached us in kind words of the Christmas spirit, but then said something I didn’t expect and appreciated more than words can describe. He wished us all “Merry Christmas” and happy thoughts, then he trailed off........he mentioned how this time of year is so hard for so many. Our pastor shared with the congregation that as many are in joyful spirits, so many people are facing emotional weaknesses and waves of missing their loved ones. Wow! I was blown away in gratitude. He didn’t forget about us! He didn’t forget about this club we hate to be a part of. He considered us. It was so much appreciated as I needed a tissue box to soak up all my tears of pain and thankfulness.

We started our Christmas morning meeting with some friends from our Grief Share support group. When they walked in the door, I knew I could let out the pinned up tears. I needed an initial cry, and I was so thankful that I was safe with them to do so. We spent an hour at Starbucks, talking about our kids, our last Christmas with them, and the pain we felt. Pain is so real, so raw, so pure. Pain doesn’t lie. Pain brings people together. Pain and grief, I believe are something that I now know God wants us to live, walk through, and be a part of. In pain we grow, we find ourselves, and we connect. We truly connect, unlike any other way. I am so grateful to our dear friends for connecting with us and being a support to us on that very difficult morning.

Last year we had a NICU Christmas with our girl and Papa & Gaga, (Thomas’ parents). What an amazing Christmas it was. This year, we just wanted to be where Heather was last year. We wanted to experience her first Christmas again. The best way we found to do this was to do another NICU Christmas. 

The NICU can be the darkest place you have ever seen......and it was for us, but didn’t stay that way. Heather had too many scares in the NICU, we had too many sit-down-talks with doctors not knowing what to do. We had some palliative discussions within the first few weeks of her life. While some families have the joy of taking their baby home two days after delivery and their major decisions are to breast or bottle feed, decisions on sleep habits, making a schedule, etc., NICU parents are learning their child’s vitals and resting heart rates. We are learning all about their internal anatomy, what upcoming surgeries our babies have, what their oxygen rate is, their feeding tube rate, and what treatments will be upcoming in the next few weeks. While other parents are excited that their baby is holding their head up on their own, bearing weight down, bringing their knees up to crawl and eventually pulling themselves up to standing to walk, NICU parents are focused on physical therapy because their baby is bed ridden, holding their head a certain way so they can breathe, asking for assistance and permission to hold your own baby because of all the wires, chords, and oxygen supplies. Instead of our baby being attached to us for nursing or comfort purposes, NICU moms cannot hold their baby whenever they desire because of severe medical complications.  It’s traumatizing, to say the least. What these parents and babies go through is a whole new world we’ve been exposed to. And you can’t take a break during the Christmas holidays from any of this. What the staff offers in the lives of these families is something so giving, magical, and passionate. We have lived this life and we wanted to give as so many others had given to us. 

It’s the fight of all fights in the NICU. It’s fighting for what is the very best for many people’s chronically ill and dying children.  We felt that if we could just bring some food and small gifts to let them know that we KNOW what they are going through, that was bigger than any gift we could have received.  We don’t quite know what to do with the appreciation and praise we received on that day. We simply brought food and gifts, while other families are making life and death decisions and doctors are responding to code-blues. What we did was simple. What we did, ultimately, we needed to do for us. I guess it was a win-win that we all benefited from strong support, food, and gifts, but we were the ones that really needed it. We needed to be there. We needed to be somewhere where Heather thrived, lived, and left a legacy. We needed her presence. It’s where we were meant to be this year. We couldn’t have imagined being anywhere else other than that dark and magical fourth floor of Children’s Hospital. We felt purpose. We felt warmth. And most of all, we felt a little bit of Heather. 

Coming home after the NICU hit another level of hard. We were coming home to an empty house. We were coming home to a childless house. I thought I had gone through all the tears I possibly could, but then a fresh new wave of tears came through. I didn’t have the strength to talk to both our families. I was thankful I picked up prepared food the day before. I just needed to cry and cry and cry, while looking at Heather’s baby pink tree we received from “Big” Heather. Those tears kept coming, pouring, and I needed them. Tears, I’ve learned, are so pure, so magical, so incredibly needed. The tears are there. They either come pouring out, or get stored in to scar and damage. Again, I’m so thankful for our guidance in grief counseling. I’ve been almost “trained” to let them just come pouring out. It’s what has helped me heal in the ways that I am capable of healing. 

The holidays of 2014 were rough. And now we approach Heather’s second birthday on New Year’s Day and the date she received her angel wings one year ago on January 31st. Our year still has hard days ahead, and our life, in general, will always have hard days. We are so grateful to our family and friends that have supported our decisions around these tough holiday times. The biggest thing we’ve learned about the holidays, especially the firsts without Heather, is that we just have to do it our way. We have to sometimes stand still in our moving forward. Going against what works for us in these challenging times, just makes us move backwards, away from God, and away from our marriage. This is the time we’ve learned and been taught repeatedly that it’s truly about us and what we need at this time. We want to be people-pleasers to do what our family and friends ask at times, but we can only do what we can do. We don’t mean to pull away, we don’t mean to exclude ourselves, but there is an immense amount of processing and management that is needed this year especially.

We don’t expect others to understand, and we can’t explain it to make others understand. For you to understand our life and choices, you have to experience the greatest pain we believe there is, and we do not want that for anyone. With closure on this entry, thank you to those who have been what we have needed and have honored “our way”. We continue to pray impossible prayers, be so thankful for our amazing and strong marriage and friendship with one another, and for our renewed joy of this special pregnancy and bundle of joy on the way. 


This year has been just simply surviving, and I have come to realize and believe that is good enough for now.

Saturday, December 6, 2014

Heather's Gifts: Paying it Forward at Christmas

Christmas is a time for joy, happiness, and traditions……for most. We have seen life from many new perspectives caring for our amazing miracle, Heather Faith. Part of Heather's life was spent in the NICU, where families live during birthdays, holidays, and special events, and where the NICU staff does exactly the same.

It's typical to ask where people are going for the holidays and what their plans are. Most people love to share their excitement in their holiday plans, while others are just trying to survive the holidays. Families struggle finding the joy while living in the NICU/hospital setting, living away from their home in the Ronald McDonald House, or managing their life in grief without their loved ones.
For some, the holidays are tough…..but together, we can help make them more manageable and maybe even happy for a moment or two.

Our life is forever changed with the amazing perspective our daughter has led us to see. Life is precious. Life is short. While we try to teach our children about life, they truly teach us what life is all about.  We spent many days, some holidays, and special life moments in the NICU. What we came to learn was it didn't matter where we were or what we had, we just cared that we were together. We found our own way to celebrate to give our daughter the best of her very first, and only, experiences. Whether you are in good health or terminally ill, none of us know how much time we have left here on earth. We hope to pay it forward in Heather's honor, by sharing Christmas love every year in a new tradition called, "Heather's Gifts".

"Heather's Gifts"is a new Christmas tradition we wanted to create in Heather's honor to remember her, and to teach our future children about the need of special needs children and their families around the holiday time. We did not live in the NICU at Christmas time, but we know the longing for extra love and kindness during difficult times in life. "Heather's Gifts" is all about paying it forward. We decided to do one more NICU Christmas to celebrate where we were last year with Heather. We are excited to pay it forward, but we also know that this is something we particularly need this year in our first year without our girl.

We have been blessed by so many of you who want to give, serve, and help with this new and special tradition. We are humbled to say that the NICU Christmas is fully funded, but we wanted to offer other options to give and/or serve. Anything you do for a family in need is a blessing to them, so let your heart lead you to where you are most passionate.

We have come up with some ideas we plan for the future and also to share with all of you!

Ronald McDonald House:
http://www.rmhc.org/season-of-giving

The Ronald McDonald House helps families who are supporting sick children in hospitals. All RMH houses are located closely to many Children's Hospitals around the country. These houses are similar to hotel accommodations at a very low cost to take financial strains off families. Most rooms start at $20/night, but it still becomes costly when months are spent at these homes. In house kitchens are provided, but families are at the bed side of their children and find little time to care for themselves. Each year, the Ronald McDonald House serves nearly nine MILLION families a year, and is 100% volunteer based.
Many school, citywide, and church organizations participate in providing and serving meals to families during their stay at RMH. Thomas and I were very fortunate to receive many of these meals. If you feel led to serve, contact your local Ronald McDonald House to ask if you can prepare meals, or assist with any other needs they may have.


Children's Hospital:

Many of you know our passion for Children's Hospital Colorado! It's simply the best. The links I have set up are directly towards the Colorado Children's Hospital, but feel free to look into the Children's Hospital or other medical facility you are most passionate about.
There are many amazing ways to donate through gifts, financially, and even donating blood or platelets to these very special kids in need.

Wish Lists:
Wish lists are needed essentials in NICUs, PICUs, play rooms, and many other places throughout the hospital. These toys and activities are not just for play, but for therapy and joy as well. Due to infection control guidelines, used toys CANNOT be accepted. This is a fun thing to do with kids! Let them go shopping off the wish lists!
http://www.childrenscolorado.org/home/search-results?k=wish%20lists&category=all

Give directly to Children's Hospital:
Children's Hospitals are 100% donation based. Simply amazing! They can only do this with people who continue to give!
http://www.childrenscoloradofoundation.org/site/c.jfILKSOBJsG/b.4489445/k.BE7B/Home.html

Give Platelets or Blood:
Some screech at the thought of this. It's ok, it's not for everyone. For those who don't get too queasy, please know that blood and platelets are ALWAYS needed. You really are saving a life!
http://www.childrenscolorado.org/donate-volunteer/give-blood

Needed Bereavement Services:
We have been blessed to walk beside many people struggling the loss of a child and see into their raw and wounded hearts. It's an awful journey to walk, but the most real and open hearted experience we have ever faced and seen. We are all in a tough place, but rest assured time makes life more manageable. If you continue to struggle your loss, please seek help. We have and continue to do so. Sometimes the best thing you can do to give, is to give and offer this professional bereavement counseling to yourself.
http://www.childrenscolorado.org/about/family-services/bereavement/resources


The best gifts I have ever received have not been tangible objects. They have been gifts of the heart. True sacrifice, putting others far above your needs, "Tiny Dancer", kind messages from strangers, and the best of all, the gift God gave us in Heather. A true miracle!

So, let's have fun with this! Find a way to incorporate your own version of "Heather's Gifts" into your life, into your children's lives, into your work place, and anywhere else God may lead you.  Share your journey, share your experience, and share "Heather's Gifts" by hash-tagging your gift of service: #heathersgifts.  Let's encourage others to give not out of pressure or obligation, not by showcasing your heart or "showing off", but by truly being moved by miracles and paying it forward. Let's make giving contagious again!