After a Year…...

A year after loss....a full year. Living an entire year without my daughter has been painstakingly hard, to say the least. I feel like Heather went to Heaven just yesterday and forever ago all at the same time. I can remember that traumatizing day too vividly.  I didn’t quite know where I wanted to go with my endless thoughts in writing this entry, but I’ve decided to write about the approach we are taking on this one year anniversary, some of the roads we have traveled, what I’ve learned about myself on this journey, and this new perspective I have in this new life. 

January 2014: Heather had just started eating for the first time by mouth, she was giggling, engaging, and cooing more than ever before, we celebrated her big one year birthday bash, and so much more. We found ourselves believing Heather would be great for longer than expected. We had let our fears go, we trusted God, and knew that our miracle baby girl had found her purpose in life: restoring hope and making people believe in miracles again. That’s what January 2014 looked like from my perspective.......but out of no where, it came to an end.

The One Year.....

As this one year anniversary of Heather’s death is upon us, I find myself at a loss of what to think, feel, or do. There were so many days in her 13 months of life that are so worthy to celebrate and honor in the future. January 31st, the day she died, is not a day to celebrate. It’s not a day to honor and cherish. It truly was the most awful day of our lives. Doing something happy on the day we lost our child just isn’t natural for us. So, our approach is to just get through it. Get through the week, get through THAT day. We’ve decided to do our own personal balloon release every year as it’s important to us in teaching our future kids that January 31st is a very hard day for Mommy and Daddy. It’s a private moment we will be having, along with doing anything we can to make the day go by as fast as possible. If anyone would like to do their own special balloon release, we invite you to do so privately and let that be your own moment in your own way. It honors us so much that so many people miss Heather terribly.  We want our support system to have the opportunity to honor Heather in whatever way you see purposeful for your heart. We just ask you keep it private and away from social media as we don’t want any added attention towards this day as it’s already painful enough. We appreciate your understanding, consideration, and love how so many of you continue to shower your prayers upon us while remembering our girl.

Our Travels.....

A year in the life of loss included A LOT of grievance counseling, (that we both continue to go to), an unimaginable amount of tears, prayers without having any words to say, the most confusing moments in marriage, so much anger towards God, horrible flashbacks, Heather’s story being exploited by others, seeing people leave our side, seeing people never leave our side, and most of all, watching our world stand still and literally stop while everyone else’s lives carried on. A year in the life of loss also included the need to press the “I believe” button with God. I had to just rely on that Faith that Heather renewed in me to just believe even when I didn’t want to.  A year in the life of loss showed people running, even sprinting, to be by our sides no matter what it cost them. I continued to witness the most selfless acts of sacrifice, giving, and kindness from so many amazing people in our life. This year brought a lot of awful feelings, but also a lot of amazing grace all wrapped in one. 

Grief-counseling: God bless grief counselors. There is such a taboo on counseling in general. I will be the first to say that there is no way I would be standing on two feet if it weren’t for these professionals that have led us back to a path of understanding, problem solving, forcing us to live our emotions and embrace them, and most of all, be ourselves and do what we need in our life. Grief counseling is hard.....no, it’s brutal. The first advice our counselor gave to us in our very early stages of grief was awful to hear. She said, “You need to live in your grief.” Are you kidding me? What did you think we were doing? She just encouraged us to cry, be true to where we were, talk about Heather, and just function. We weren’t supposed to start putting ourselves back together yet. It was too soon. We just needed to be in heartache, be at our peak of sadness, and just miss our daughter. Heather’s life was taken from us too soon and suddenly, and she assured us that our emotions and feelings wouldn’t be. I needed those many, gruesome, mournful months to respectively grieve. What we wanted was to figure out life again. We wanted to figure out what we were supposed to do......her response continued to be, “Do nothing right now”. Looking back, those awful months of only crying and functioning are months I wouldn’t change and I’m so grateful for. Why? Because I didn’t stuff my emotions. I didn’t conceal, repress, or silence my suffering. I may have become a bit of a loner, but I was put to work in those lonesome days. I wrote on Heather’s blog, I wrote on my own, I watched all her videos, looked at pictures, did projects to remember Heather for our home, I smelled her clothes and blankets, cried endlessly, and I was consumed by loving messages from friends sharing their memories of Heather. I truly grieved. I took action. Painful action. To many, it may have seemed that I was just allowing myself to sink harder and deeper, and I was, but I made the choice to actively grieve and confront grief head on. I had to come to a difficult realization, that very few people could actually help me during that time. It was an awful, painful, uncensored, hurtful, laborious effort........but taking those uncomfortable steps is what helped me be able to fully feel and believe that I “successfully grieved” in the way I needed to. I continue to go to a grief counselor one on one, and Thomas and I continue to go to a different one together. Grief counseling has helped tremendously.

“Grief never ends...but it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith...it is the price of love.” (Author Unknown)

In addition to grief counseling, Thomas and I joined a Grief Share Support Group. This group is a Christian based support group that helps people handle loss. This group consisted of people who have not only lost children, but have also lost a parent, friend, spouse, sibling, grandchild, etc. After a video that we would all share, we broke up into groups according to the specific loss. We were blessed to meet four other parents who had suffered an extreme loss of a child. It was such a safe place for us to go to, people to immediately relate to, and a place we both needed to shed, what seemed like, never ending tears. It was so comforting to learn that the average loss takes six months to two years to really feel progress moving forward. We had a common ground, yet something we all wished we never had in common. This group helped us both in so many ways, and we both felt like we got out of it what we needed. After completion of this “course,” I joined a moms’ group.......where fourteen bereaved mothers showed up. The stories of these children’s lives are like nothing I’ve ever heard in a concentrated form. These angels in heaven and bereaved parents are my version of heroes. It’s intense, but I feel that’s what a huge part of my life is now. It’s where I want to be, and it’s where I choose to stay. I choose to be a part of this foreign common ground, and to help and serve other parents in the bereavement process as so many have done for Thomas and me. I call it my safe, dark, happy place. It’s a hard place to love, but it’s a place I’ve learned that I love and a place where I need to be. 

I was also fortunate enough to find another bereaved mom through the Children’s Hospital NICU. This very special mom and I connected immediately. Our husband’s love each other too (Thank goodness)! Our kids not only shared the same NICU room, but our children’s lives paralleled in many ways. Plus, we were all Green Bay Packer fans, so that was just destined to be. We all wanted to honor our children’s legacy after they had died. We clung to each other! We all still wanted our titles as parents. I didn’t want that title to go away along with the physical presence of my daughter, and neither did they. I do not believe that holding onto the title of motherhood is living in denial. Instead, it’s sharing a story. This story is a part of my and Thomas’ life, a part that we, personally, refuse to deny the existence of. I feel that Heather looks down on us from heaven, watching, observing, seeing how Mom and Dad are......and as I feel that way, I still want to make decisions she would be proud of me for (this concept is not something that Thomas and I agree on. The Bible isn’t clear about people’s timeline in heaven and if and/or how they view people on earth). However, I still want to honor my roll as a mother from afar. So, I am owning that title!  I am so thankful to my dear friend that has helped me in realizing this unfamiliar territory, teaching me how to adopt it, and continue to coach me every single day in this new life. We like to call them our big brother and big sister! 

Thomas and I have offered our story, experiences, and testimony to other families and staff at Children’s Hospital. It’s been amazing to see how powerful of a connection this creates to a level of such depth. People strive to connect in the NICU setting, but only if it’s relatable. Serving these families in the midst of healing has been a gift and a calling we feel God has given to us. Putting ourselves back into this territory was an emotional challenge; we took many baby steps along the way to get there. Some of those baby steps were simply just walking in the door and taking cookies, then leaving. It was a process, but CHCO is another place that is just magical to us. It’s hard and painful to witness what families are living through, but we have been given the ability to relate and to help. We were experts on Heather. We’ve become experts on what works for us. We may not be experts for everyone, because everyone is so different, but we can give examples that are true and honest, and we have the ability to give direction. We continue to get involved in other areas of Children’s Hospital and hope we can give back just something for all of those who gave so much to our daughter during her stay in the NICU. 

What I’ve learned....

I am a Mom. I know, and I still believe, I’ll always be a Mommy to Heather, but transitioning from an active mother to learning how to be a mother to a baby in heaven is not something that is easily done. There’s no “how to” book and very few people can give you real advice on this subject. It’s a concept that many who have suffered child loss shy away from, but I chose to embrace this new version of motherhood. I felt it was a calling.

I was exactly everything I wanted to be as Heather’s Mommy. I clearly knew who I was as an Air Force wife, and I knew who I was in my passion as a dance instructor.  Most of all, I knew and still know who I am as a mother. When my earthly motherhood was taken from me, I lost my entire sense of self. I lost all self-esteem, confidence, I became paranoid, lost, helpless, and felt more alone than ever before.Thomas going back to work was hard on me. Work was something he needed for himself though after a month of grief. Work was a way for Thomas to do his natural instinct: be a provider.  Thomas was also finishing up his Master’s degree at the time. When his homework piled up, and his demand for work was high, I felt like I didn’t even have him.  My life changed instantly, unexpectedly, when everything was going my version of perfect. That life was the exact place where I wanted it to be, then it was gone.  Thomas had something “normal” in his daily routine to go back to, but I felt I had nothing. I was starting completely over in a new life I didn’t want.  That downward spiral was so much easier to fall into than the upward spiral I was fighting with the gravitational force of grief. I sank a lot, and sank more deeply than I would like to admit and more than I ever showed to the outside world. One day, Thomas said one of the most powerful statements he has ever said to me. He said, “Jess, I know Heather’s gone, but I’m still here. I need you.”  That specific moment with my husband sustained me to take a step. Subsequent steps weren’t always forward, but it bolstered me to have the drive to breathe, sleep, shower, eat, and do the basic functions in my day. That was the best I could muster for many months. That moment my husband and I shared kept me going and encouraged me more than I can ever describe to him. I don’t know what I would do or where I would be without him. So, that was my very first step and very slow step back to life.

This last year, all the rules went out the window for me. I found so much about myself than I ever expected to know. Although I’m extroverted in my personality, I learned how extremely introverted I am in the way I process and reflect my emotions. I’ve always been a big people-person, but instead, I felt panic attacks coming on when I was around crowds of people. I became private in many ways this year, and learned to guard my wounded heart. (Proverbs 4:23)  The hard stuff became harder, while the easy stuff also became hard.  Normal was gone. Lost. That past “normal” I once had, no longer existed. Grief amplified everything. I was unable to focus on anything and was always very distracted, even if I was just staring at the wall. I needed to constantly be reminded of who I was by those who loved me. I needed to be reminded how much Thomas, Heather, and I were still loved. Thomas and I struggled, but we came out stronger.

I’ve learned that I absolutely have to honor what works for Thomas and me and our life, rather than being a people-pleaser. We’ve learned how crucial it has been to listen to our instincts and be our true selves. I’ve learned that it is ok to remove myself from uncomfortable or difficult situations as needed that bring me pain. I’ve learned that the best things in life aren’t things. I’ve always known that I’m far from perfect, but when I look back at my daughter, I know I did something perfectly right. I’ve learned I want real people in my life. Real people that share their heart and know who they are. I want people who don’t have to be a certain way around certain people in certain environments.  For most of you that know me well, know that’s what you usually get out of me, but that’s something that my Heather brought out of me even more. Be true to yourself and surround yourself by those who love that about you. I know I haven’t been myself much this last year, and I’ve accepted some areas are now my old self and some areas have become my new self.

“When your child dies, you find yourself dividing life into the before and after.” -Wayne Loder 

I was continually told, “Do what makes you happy”. Hmmm.....this was a challenge for  me. What makes me happy, the most happy, is no longer here. I didn’t feel like being happy and I didn’t want to try. In some areas I needed to be pushed, but only by the right people. Not just anyone could push me into taking a step. If the wrong people pushed, I would go backwards. I did, however, need to make a conscious choice on my own to take steps, while also realizing it’s ok to not want to move at times. I didn’t WANT to go have lunch with a friend, go to church, do a date night, but I knew I needed to. I had to peel off the band-aid at some point. I realized it was ok to not want to do something, but choosing to never do anything was also not ok. 

I embraced the people I have needed most during this year: God, my husband, my counselor, many bereaved moms and dads, and my close knit circle of friends that refused to “leave me alone”. I’m so thankful they wouldn’t listen to me. I didn’t know what I needed most of the time or how to tell people how I needed them.  I wished for that insight constantly. I experienced an uncommon kind of hard that was compounded into this complexity of loneliness. I really believe God gifted a handful of my friends to sense my loneliness and depression this year. I felt positively pulled into them and that area of compassion they gave. I found others trying to reach out, but it wasn’t far enough for me to grab a hold of. I learned that I had to do a bit of reaching too, and I did when I could, when I needed to, and when I wanted to. I never intended on shutting anyone out during this time-I just wasn’t in a place, myself, to let you in. Although it’s been difficult to be away from family and many friends, I think it’s served an enormous purpose in giving us both time and space to truly reflect, process, grieve, and heal in the ways we were capable of healing.

I have felt most guided by people who have been through the hardest and worst of times. I’ve learned to seek not just any council, but wise council. I believe we all have it in us to want to give advice, because we have a need to “fix” things and to make others feel better. Some people who hadn’t been through my kind of great trauma had given great words of wisdom, like Aunt Diane telling me that Mother’s Day, “will be a hard day, but remember, it’s just another day and it will pass”. Or a great dance friend telling me, “When you lose hope, I’ll hold onto it for you”.  And another amazing dance friend who had no words, but instead gave me a beautiful gift of her choreography in, “Tiny Dancer”. When these wise women had little to say or give, they found it in them to not “fix” the place I was in. They just offered something small and simple. And that small and simple thing they gave, I really believe came from God speaking through them to me. It wasn’t what THEY wanted to do or say, it’s what they had been given to do or say. In doing that, their words and actions were supportive, tender, and so beautifully received.

I’ve found myself needing to show more grace this year than ever before. Not many people, that I have found, have the same perspective I now have on life. Honestly, I hope you don’t.....I don’t ever want anyone to experience the loss I’ve had to endure to get this kind of perspective. My loss is still present every single day. I’ve learned through the amazing moms I’ve met that whether your child was in your arms for eighteen minutes or forty years, no matter if it’s been a year or twenty since they’ve been in heaven, we will always have those unexpected waves of grief come crashing in, the memories we wished we could have made, the photos we hoped for in the future family album, the one more kiss, the one more goodbye, the one more anything. I value those small things now. I cannot wait to be up all night again with a crying baby. I cannot wait for my future child to be running and getting into everything, because it means they physically can. I cannot wait for spit-up and explosive diapers; it means things are all working properly. I can’t wait for not having any time to shower, cook, clean, etc., because I’m too busy caring for my child. I can’t wait for a child to say anything to me, good or bad, because they have the ability to talk to me. From what I’ve seen, many people view those cares of a child as inconveniences, “it’s too hard”, I need time for me. I just have a hard time thinking that way now.....I saw the too hard in death, I have too much time for me now that I never wanted, and I experienced different kinds of child inconveniences with breathing tubes, feeding tubes, surgery, and life support care. Running and getting into things, screaming endlessly, and throwing tantrums, all sound pretty great to me. No one said the job of parenting was easy. I’m not writing all this to make anyone feel bad in any way. I’m writing this because I’ve been given a different perspective. A different outlook. A different understanding. I’ve lived a different life and it’s been a hard one to live. I know I already don’t think the same way as many people, which makes it challenging to connect with new people in this new life. It also makes it challenging for me to be empathetic to what I view as petty and unimportant. The extremes I now know are too severe, too fragile, too irreplaceable. My perspective is different than most people’s.....not wrong, just different. I now come from a different place than I did two years ago, and I’ve come to realize that is all more than okay and is just where I am. 

These last two years have taught me more than I ever expected to know in a lifetime. I want purpose in everything I do. I know I only want meaningful relationships that include depth.  I want to focus on the glass half full, not half empty. I want to focus on what I have, not on what others have. I don’t want to complain about the petty things in life. I want to live in a way that my daughter looks down on me from heaven and is proud. I don’t want to spend my time attending pre-baby lifestyles such as extreme night life or bar-time. I want to strive to be a better version of myself everyday. I want to surround myself with people who lift me up higher, encourage me, and teach me. I want so much more in life than I ever thought I wanted. I want to be a wife and mom that, although I may be living in dance clothes and have missed a shower, hair, and make up for days, I can get dinner on the table for us to enjoy together. Whether that dinner is cooked from scratch or is a last minute pizza, it’s time for us to be together. I want to be the “soccer mom” in the dreaded, potentially needed, mini van toting her kids around to all their events. I want to be the room mom party planner, the mom that lets your kids wear their halloween costume year round because it’s fun, and the mom that lets the kitchen floors be sticky because I’m too busy cuddling. I want to talk about the hard, happy, ugly, funny, and all the above stuff with my family. I want to teach my future kids about life. Real life. I want to teach my future kids about their big sister and her legacy. I want my future kids to know how amazing special needs kids are. I want my kids to have compassion. I can hardly remember my life before I was a mother, what I wanted, or what I did. I know it’s just all I want now. 

I want to commit my life to helping families with rare, chronically ill children, on how to cope with a short life span, enhance the life they have to live, and walk beside them when grief shows up at their door. I want my life to be meaningful in my walk to build a stronger relationship with God, (that’s really hard by the way), be the best wife I can be in my marriage, be the most loving mother I can be, a strong educator and mentor to my dancers, and a friend to those in need who are forced to walk the path of grief. I want to always be a part of grief counseling in some way, grief support groups, and the most magical place I know of, Children’s Hospital Colorado. I feel so alive in these places I’ve become a part of. I’m now forever exposed and aware to a whole new world that so many people steer away from or are never asked to experience. I want to dive in to stay, support, and know that I can also still be supported. I want to be in places that I can truly be myself and live the story God has placed upon me. 

Am I Happy?

I used to be so in my head about my life. Now, I’m learning to be content with where God wants me to go. After all my husband and I have been through, I can genuinely say that I am happy again. It was a hell of a roller coaster to get here, and we get smacked with unexpected waves of grief still and know we always will, but after accepting that it was ok to be happy, we became happy again. I’m happy in the ways I can be happy about. I will always miss and want my daughter back, and that’s an area I know I will never be content with. However, I can be content that I know Thomas and I gave

Heather her very best life. I have no regrets from that perspective. I will always miss her, always want her, always remember her, always honor her, and always love her. 

My Heather Faith not only taught me, but showed me every single day, for thirteen months, who I really wanted to be. She continues to show me still all the way up from heaven. It’s taken me until the age of 29-31 to really realize my love for life, my appreciation, my drive, my goals, my priorities, and so much more. Life is way, way, WAY too short, even if you’re given 100 years of life. Please, take it from me, and my daughter’s miraculous life, don’t take anything for granted: your sight, your hearing, the hair on your head, your ability to eat, breathe normally, walk, run, jump, dance in the rain, and jump in mud puddles. Live real life. Live the messy life. 

A great author and blogger I’ve loved to follow stated this, “I get far too much credit for faith, when all I’m really doing is sharing my weakness and honesty. Your weak faith is enough when coupled with God’s grace.”-Kara Tippetts. I couldn’t have found better words myself to state exactly what I believe.

It’s true. I’m not strong or brave. But God is, so I just borrow those qualities from Him. I try to remember the following two philosophies for everyone I will ever meet for the rest of my life: Every heart has a story to tell and every breath is a second chance. This is mine. This is Thomas’. This is Heather Faith’s. This is our life, our story, and we know we’ve been called to share it. 

My next blog post: Our Rainbow Baby!

Stay Tuned….