Integrating Loss into Life

Integrating Loss into Life:

With great challenge, I have decided to write a blog post on my personal grieving process. This is my wounded heart on paper, and I must admit I feel extremely vulnerable sharing this. However, I feel so drawn to do this by God’s grace and to share this for those who have suffered the loss of a child. I want other parents to know they are not alone, and I pray this will help other parents in some way. We have learned that the grieving process is very different among everyone. Thomas and I are even very different in how we have handled losing Heather. This is not wrong, it’s just different. Because I believe that the grieving process is very private and intimate, I have decided to share my experience, and allow Thomas to share his story, if he feels open to it. So, with this request I believe God has given me, along with fear in being so open in this way, this is what my grief looks like, what helps, what does not help, and where I am. 

What helps me:

• First and most importantly, WE BOTH LOVE TO TALK ABOUT HEATHER! Please, do not be afraid to say her name, tell us memories, dreams, or the ways she has impacted the world. We love hearing everything about her anytime of the day. She is our daughter, our first born, and our world revolved around her. It warms are hearts that others still keep her memory alive. 

• While some people may become skeptical asking or talking about Heather, please know this: we are going to cry. It’s human nature for us to cry over the loss of our daughter. The more tears we shed, the more we heal. Please do not be fearful of making us cry, avoiding something so we won’t cry, or excluding us because you are afraid to see our tears. The tears are here whether we are in your presence or in the privacy of our own home. Heather’s chaplain from her funeral service shared a sweet story with us of a mother who lost her child 50 years ago. Fifty years later at mentioning her daughter’s name, still brought tears to her eyes. Our journey with Heather will not be finished until the day we meet her again at the gates of Heaven.

• I love all the cards so many amazing people have sent us. Words of affirmation is my personal love language.  Sending a card is my number one most cherished gift anyone can give me with writing true, raw, and heartfelt words. There is no other gift I cherish more than a compassionate and honest card. I have loved all the text messages, emails, and phone calls. Reaching out with kind words is the act that I love and need.

• Simply being available is so helpful. Being available and not trying to “fix” anything is the most helpful. There is an amazing video called, “Broken is only the beginning,” by Glennon Doyle Melton. She made so many valid points about grief, but this one is my favorite, “Grief is like JOY! No one tries to take away your joy, so do not try to take away someone’s grief.” This couldn’t be more true. The people that have had the strongest impact on my grieving process are those who sit in the grief with us and listen.

• Grief counseling. This has been a needed time for Thomas and me together. It’s a place we can go to and truly grieve. It’s exhausting and emotional, but it validates our feelings and emotions in a safe environment. I highly encourage grief counseling to any family suffering. 

• Future holidays and milestones are still to be celebrated. This is a tough one. The hardest one for me to think of right now is Mother’s Day & Father’s Day. What are we supposed to do? Being Heather’s Mommy made me realize how special these days truly are. It’s a day I could just hold Heather all day long and have no other obligation to do anything else. How am I supposed to enjoy this day without her? It seems literally unbearable to me. She was my little butterfly on Halloween, we had a great Thanksgiving, Christmas in the NICU, and most importantly, her very pink first birthday. These upcoming events give me anxiety, and it makes my heart hurt just a little bit more. I don’t know how we will celebrate these moments yet, but I know I do not want them ignored. 

• Please do not be afraid to ask us to dinner, or to go on a walk, or to do an activity. And guess what, we are probably going to say, “No”. Please ask again, and again, and again at a later date. Also, let us know that it is “ok” that we said “no”. It is so hard to say “Yes” to something that I know I am doing without Heather. There is a consuming form of guilt that has overcome my life in knowing that I can have fun, I will laugh, and I will be happy. I view me having fun is me accepting that Heather is really gone, and I am having fun without her. A part of me has died and I have to re-learn how to experience fun again as a new person. However, as difficult as this is, I have allowed a few people to have fun with me. It’s a slow process and it has to be with someone I am extremely close with. So, please be patient with me, it will take me some time. I do know that Heather would want me to have fun, so instead of feeling guilty, I am trying to “take her with me” everywhere I go. She’s in my heart, she is part of my soul, and she will never be absent from my being. She is my motivation and my inspiration to move forward, not move on, and to serve God and truly honor her life. 

• Read a book about grief or visit with a grief counselor for advice. When we don’t know how to cook something, we google a recipe. When we are unsure of how to fix something involving technology, we take it to the customer service center. However, when we don’t know what to say to someone who is grieving, many people walk away and do not say anything, which is the most painful thing someone can do. 

What does NOT help:

• Do not avoid calling us, texting us, or emailing us. That is the absolute worst thing someone can do. Even a voicemail with the expectation of no returned phone call is great. People tend to stay away because they don’t want to “intrude” or don’t know what to say. You are not intruding and there is nothing you can say. Frankly, feeling uncomfortable or at a loss for words is putting your own feelings first. It’s very obvious and it is hurtful. Even just saying something simple like, “I am thinking of you,” is so powerful and effective. If we don't return a message, please keep trying, again, be patient with us. 

• When you choose to be available to listen and help, do not try to relate if you cannot relate. In other words, with the loss of our daughter, try to avoid saying things like, “when my mother died.” Parents should never outlive their children, but we did. It’s as if you’re relating our daughter’s life and death to someone who had no to little health complications and lived a fairly long life. Your pain of your loss is still extremely valid and very important, but it is not the same as losing the child that grew inside of you. It is perfectly acceptable to ask a question like, “Is it ok to share this story with you? Or is it too soon?” People who are real and honest have the biggest impact in being truly helpful.

• Do not help because you want to help. This may sound strange. Help families in grief by asking what THEY need, not what you would like to do for them or what you think is best. If you would like to do something specific you have thought of, always ask first. Specific questions like, “Can I bring you dinner,” “Can we have a phone date/lunch date soon,” “Can I pray over you,” “I have an idea, what do you think?” etc. This is when specifics are so effective. My brain is very unfocused, and these specifics are extremely helpful.

• Big groups.....are not my cup of tea right now. For those of you who know me, know I’m a social butterfly. I am just currently having a difficult time with being around a large group, especially if I do not know you well or at all. It’s just too much at this time. 

• This is a big one. Please seek our permission when sharing public matters in our daughter’s name. Thomas and I are private people, (kind of hard to believe, huh?) As many people on Facebook have made fan pages to share their child’s miraculous story with the public, that is not us. I have loved those fan pages to learn about other children’s stories, but with the amazing awareness it brings, it also brings hurtful questions from outside emotionally detached people. It’s too much for us, but I honor those who have taken this approach. Facebook is the amazing avenue we have been able to use for family and friends to be close to us while being far away. This information is for our family and close friends. We have loved that people have shared my status updates on their own personal walls, or started some of their own awareness for Heather and Complete Trisomy 22. However, we are extremely specific on what we do and do not share on Facebook and with the public. With so much love to share, we honor ALL of YOU sharing, but we do kindly ask that if you share any information about our daughter, no matter how simple it is, we ask that you tag Thomas or me in your update or post or get our permission first. We want to know what information is going out to the public about our child, while also making sure that all the information is 100% accurate. We want Heather’s story to be known, but not solicited. I must mention this, because we have already had this experience occur by several people, (all with great intention). We kindly ask that you approach us as Heather’s parents before you make a decision on our family’s behalf. Please do not let this discourage anyone from sharing Heather's miraculous story.

• I am still fragile in many areas. Everyone’s life has gone back to normal, and mine will never be the same. I must move forward as a new person with Heather living in my heart and mind, but not in my arms. This new normal was not something I wanted or chose. Some days are ok, and some days are far from it. My body has physically hurt from being immobile for almost a month after Heather went to heaven. The physical pain of emotions are overwhelming and exhausting beyond description. I used to do all these Mommy things for my baby; change her diaper, rock her to sleep, pumped milk, make baby food. My baby was my world. She needed our care 24/7 and I stopped everything in my life to cater to the needs she had. My every single moment of every single day is no longer normal. I loved every moment of our joyous and fulfilling life with her and there is not one thing I would ever change. However, since I dropped everything, I have to find myself again. A new self. I AM a mother, but I’m a mother without her baby. That is who I became. Whether my daughter is here or in Heaven, my title does not change. I was pregnant, went into labor, delivered a beautiful baby girl, had an amazing life with her, and it came to an end. Just because she is not physically here, does not mean that my pregnancy was taken away, that I didn’t experience the touch of her skin, or that I didn’t have this unconditional love. That doesn’t go away, and neither does the title of being a Mom and Dad. She was a part of me and I only felt whole when she was with me. Now, that piece of me will always be missing until I reunite with Heather in Heaven. 

• My relationship with God......is so hard to have for a little while. He has taken the most precious thing in my life away. It is difficult to talk to Him, to ask for help, to pray, and to lean on Him. I know He is there, He always is. I do have faith in what I cannot see and have so much hope for the future. Sometimes the future for me is in the next hour, or the next day. Not the next week, or month, or year. The phrase one day at a time is so true and so taxing. That is what my life is at the moment, one day at a time. What is comforting to me, is that my one day at a time mentality, is spent with God and the amazing man I love, the man I am lucky to call my best friend, the man that is the love of my life, and this man is my husband. My biggest comfort for the future is this: God has everything already planned out until the day we die. He has it all worked out and knows how many hairs we have on our head. THAT is why I do not worry. God has given me today and tomorrow is His. 

• Sometimes what helps for a little while, doesn’t help forever. This awful grieving process is a mean, nasty, spiral, (as most books and counselors describe). You go up and down and up and down constantly, where it literally seems never-ending. Sometimes we just need a mindless break: a movie, dinner, a walk, etc. It’s impossible to think of Heather all the time, (which makes me feel so guilty), because although there is so much joy, there is also so much pain in missing her. 

Thank you for taking the time to read this about my personal journey. Again, this is not a perfectly, organized layout of my heart or my mind, but it’s what I can currently give in the place that I am. Thomas and I have lots of movie nights, times of being together and to ourselves, while allowing certain people in very slowly. While we miss our Heather everyday, we still have HOPE. “Hope is the expectation of a good that is yet to be. You create hope on yourself by actively mourning the death and setting your intention to heal.” -Alan D. Wolfelt PhD