Five Months Apart

Daphne passed away five months ago, today. On these monthly anniversaries, 11:00 p.m. is the hardest hour for me to face. It marks the time when part of my heart left the earth, and I became a different person. Over the last five months, I’ve tried to reclaim the woman I was before Daphne’s passing, but it’s impossible. It’s hard to explain how I’m different. I suppose I’m both better and worse.

I used to be a perfectionist, giving 110 percent to every aspect of my life, but I seem to have lost the focus and drive I once had. Most things just don’t seem important enough to warrant that kind of sacrifice or commitment. I can still give 110 percent, but I won’t give it to just anything. I’m more selective about how I spend my time, and I’m better at knowing when 90 percent is good enough. (I mean, is it really necessary to scrub the counters three times before declaring them clean?) Sometimes this makes me better at prioritizing and putting the most important things first, but sometimes it makes me stand in the middle of a room, feeling lost and unmotivated. I’m grateful that my priorities have shifted, but I miss being a little OCD. I miss feeling put together and on top of my life, and I miss the satisfaction of going the extra mile. You’d think I could just decide to go back to my old ways, but it’s not that simple. I’m not that person anymore.

I’ve always been a compassionate person, sensitive to others’ sorrows, but now I finally understand the difference between sympathy and empathy. Before I lost Daphne, I mourned with those who mourned and comforted those who stood in need of comfort, but I didn’t really know grief. I didn’t understand its complexity or its permanence. Now when I hear about other tragedies and trials, it opens the wound in my heart. I weep for the individuals who are suffering and for my own loss. I remember the darkest moments of my life, and I wish I could wrap my arms around the bereaved and shield them from the long road ahead. Healing and peace will come, and grief will become a soft whisper, but it will never leave, and their world will never be the same. Knowing that is as heart-rending for me as that first, fresh pain.

Losing Daphne has made me more empathetic and more charitable, but I’m ashamed to admit it has also made me more selfish. I want everyone to love and miss her as much as I do, but each new tragedy reminds me that isn’t possible. For me, the pain of losing Daphne is still fresh, but for everyone else, new sorrows have pushed her story into the world’s collective past. I know family and friends still love her and think of her—a dear friend visited her grave just last week—but it isn’t the same for them. Of course, it can’t be, just as my grief for others isn’t the same as my grief for Daphne. I guess I’ve been running from grief by trying to make Daphne’s life powerful and inspiring for others, as if that will make her death more bearable. But it won’t. My baby has left this world, and I feel her absence even though I know she is happy and safe.

I have to remember that Daphne’s life mattered to me and it mattered to God. And that is enough. Anything else I do with her story or her name must be done in the name of the Savior. I think Daphne would want it to be about His life, not just hers. Perhaps that is how I will recapture myself.

In Loving Memory: Bows for AL Babies

After Daphne passed away, I needed a way to think about her without focusing on my grief. I wanted to remember the blessings and miracles and ignore the unanswerable questions that made me feel weak, guilty, and ungrateful. I wanted to do something to honor her memory, thank the doctors and nurses who cared for her, and comfort other moms with sick babies.

The week after Daphne’s funeral, I began making small, handmade hair bows to send to UAB hospital in Alabama. With the help of several friends, I made 350 ribbon bows and 100 mini felt flowers (inspired by felt flowers I saw on the blog Make It and Love It), which I divided into 50 packages. Finishing this project took longer than expected, because we adopted Phoebe just one month after losing Daphne, but I finally shipped the bows to UAB with a lengthy thank you note and a request that they distribute the bows to other moms staying in the RNICU.

Working on the bows was therapeutic. It gave me an excuse to think of Daphne and a way to share her story—something I feel compelled to do. I hope those who receive the bows will feel a small measure of comfort from my simple offering.

58 Days

58 days. An entire lifetime for my little girl.

On Sunday, we passed day 58 again, and today is day 60.

I don’t count every day that Daphne is gone, but I have been anticipating this moment for a while: my daughter has been gone longer than she was here. And every 58 days, from now to eternity, I’ll live another lifetime without her.

Since Daphne’s passing, I’ve been trying to find ways to hold on to her, to keep her story alive:

·      I spent two weeks putting together a family photo collage for my living room, when I’ve never been one to put holes in my walls.

·      I’ve been working on packages of baby bows to send to UAB hospital, where Daphne spent half of her lifetime.

·      I’ve been slowly working on an idea for a foundation inspired by our experience with Daphne.

·      On the very day we adopted Phoebe, I attended a luncheon for heart moms, hosted by Intermountain Healing Hearts. I just wanted to feel part of that community, even though I won’t experience a fraction of what many of those amazing moms have as they’ve cared for their sweet heart babies year after year. I have plans to get more involved with this organization in the future.

·      On Mother’s Day, I shared Daphne’s story with a room full of young women and their moms. A friend at our adoption agency invited me to visit her ward and share some of my spiritual experiences related to Daphne’s adoption and heart condition. To some people, this seemed like a cruel thing to have to do on my first Mother’s Day without Daphne, but for me, it was a blessing to have an excuse to focus on her. I love talking about her and sharing her story.

I think about my angel every day. But I try not to wonder what we would be doing if she were here, because that was never God’s plan. Instead, I try to imagine what she is doing on the other side—what she looks like, who she is with, the missionary work she is doing. I think about what she would want me to be doing here. Sometimes this helps; sometimes it doesn’t.

One of my deepest sorrows is that we haven’t been able to complete Daphne’s sealing yet. The final adoption paperwork is lost in the court system, and it seems to be taking forever. I had really hoped to be sealed before day 58. Please pray that everything will go through soon. I’m anxious to have our family bound together for eternity.

The Power of the Comforter

Daphne passed away exactly six weeks ago, today.

Some might call Daphne’s story a tragedy, because we worked so hard to find her and then we lost her long before we were ready to say goodbye. But I think of her story as a miracle, and I don’t want there to be any confusion about that.

In her premortal life, Daphne chose Heavenly Father’s plan. She wanted to come to earth, receive a body, and experience mortal life. She wanted to have a family. She knew that her mortal body would be imperfect and that she would enter this world alone. But she loved God, and she trusted Him.

God knew Daphne’s life would be brief, but because of her faith, He gave her a special calling to heal the broken heart of her mourning mother, to bring her family closer to God and to each other, and to show the world that no life, however short, is wasted in God’s eyes.

In just two months, Daphne experienced a lifetime of pain and joy. Living with just half a heart, she spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests. But she was always a mild, content baby, who never cried without just cause. When I held her or looked into her eyes, I couldn’t help but marvel at the radiance of her spirit. Although her body was small, her spirit was clearly much wiser and more mature than mine. When I held her, I felt calm and hopeful, and I knew that I could trust God.

When Will and I chose to heed the promptings of the Spirit and adopt Daphne, I thought to myself, “If the Lord went to all this trouble to bring us together, surely He means to preserve her life and let us keep her for many years. Surely, He won’t take her away too soon.” I was hopeful that the Lord would perform a miracle—that He would help Daphne overcome the odds and live an exceptionally long life. But in my heart, I knew that this was not the miracle God intended to perform. He meant to perform a much greater miracle—to create an eternal family, a family that would survive beyond this life, a family that would not be broken by death.

Our family was blessed to have Daphne here on earth for two incredible months, and during that time, we felt an outpouring of the Spirit stronger than we had ever known. When Daphne passed away, our hearts ached and our arms felt empty. We mourned for the time we would have to spend apart. We grieved because we would not see her face for a while. For us, the separation would be long, but for her, the separation would be brief.

Even in our grief, we felt the peaceful reassurance of the Spirit carrying us from one moment to the next. I expected to be a miserable mess, unable to get on with my life, but the Spirit buoyed me up, and I found that I felt calm, peaceful, and comforted. I still trusted God, and I still knew He loved me. I had been taught that the Spirit was also called the Comforter, but I had never understood how powerful that comfort could be. The Spirit did not take away my sorrow or stop my tears—I would not have wanted that—but it gave me courage and hope. It reminded me not to give up and whispered that the best way to honor Daphne’s life would be to live well, serve others, trust in my testimony of the gospel, and find ways to share Daphne’s story.

Don’t misunderstand: my grief is profound. I am a 27-year-old woman who sleeps with her absent daughter’s blanket. I think about her every day, and I imagine what it would be like to have her with me at this very moment. Since the funeral, there have been many difficult moments: the moment I stumbled on her formula cooler in my mother’s refrigerator, the moment I realized our fish would outlive my daughter, the moment I realized I would never get to make Daphne a birthday cake. But the worst moment was when I could no longer imagine Daphne’s exact weight in my arms. I could see myself holding her and remember what it felt like emotionally, but I couldn’t remember the physical sensation. And I knew that I would never get that feeling back. I could hold an object or a baby that was exactly her weight, but it would never be the same.

There are so many memories of Daphne that I haven’t shared yet, and there are also new stories about our family that need to be told. For some reason, I don’t feel comfortable going forward with new stories on this blog without finishing Daphne’s story. But Daphne’s story will be a work in progress for a long time to come, so I’ve decided to start a separate blog where I can reflect on Daphne’s life, share my grief, bear my testimony, and reminisce about my bright-eyed heart baby. The new blog will give me a place to collect random thoughts about Daphne. This blog will continue to focus on my entire family, including Daphne. Separating these two parts of my life will allow me to keep Daphne’s story alive, while also allowing me to press forward, as I know Daphne and my Heavenly Father want me to do.

If you're interested in keeping up with Daphne's story, you can visit daphnejanegainer.blogspot.com. There’s nothing there right now, but there will be soon.

Thanks for all your love and support. We could not have made it through the last six weeks without our wonderful family and friends.

A Brief, Beautiful Life

Daphne Jane Gainer, my bright-eyed beauty, returned to her Heavenly Father at 11:00 p.m. last night after undergoing a 7.5-hour open-heart surgery. I miss her desperately, and my heart feels heavy with grief. But I believe she is safe in the arms of loved ones on the other side, and her heart is whole now. She filled her earthly mission, and now she is with our Savior. Pray for our family. Right now, we need courage.

Daphne's Funeral Services

Funeral services for Daphne Jane Gainer will be held on Tuesday, March 22, 2011, at 11:00 a.m. at the HH8 Ward chapel (2101 N Providence Dr., Saratoga Springs, UT 84045). A public viewing will be held before the service from 9:30 to 10:45 a.m. Following the service, Daphne will be interred at Larkin Sunset Gardens Cemetery (1950 E 10600 S, Sandy, UT 84092). All who wish to help us say goodbye to our sweet girl are welcome to attend.

Should I Panic?

I think every new mother asks this question a lot during her baby’s first weeks of life. I know I did with Shelby. I remember taking her temperature five times a day because she always seemed too warm, and I recall squeezing her gently during the night to make her squeak and breathe a little louder. But after a couple of weeks, I became familiar with her natural body temperature, behaviors, and sounds, and I didn’t worry quite as much.

With Daphne, my fears never seem to fade. I ask myself if I should panic at least a dozen times a day. If my typically mild baby fusses or grunts, I wonder if she’s struggling for oxygen. If she’s squirmy and restless, I wonder if her body is stressed or overworked. If she’s extra sleepy, I worry that she’s getting sick. If she’s a lazy eater, I worry that she won’t grow fast enough to move on to her second surgery. If she looks perfect, I worry that I’m missing something. I’ve done nothing but watch her and her monitors for 6 weeks, and I still don’t know when to worry and when to relax.

Now, in reality, Daphne and I have spent less than 2 weeks of her life at home, so maybe I’m still getting used to her rhythm. But since she’s still hooked up to a pulse oximeter (which measures her heart rate and oxygen levels), being home isn’t a whole lot different from being in the hospital (at least not in terms of monitoring her condition).

The biggest difference between the hospital and home is that now I’m the one responsible for deciding when to up Daphne’s oxygen. When she was discharged from Primary Children’s Medical Center (PCMC) last Thursday, she was completely off supplemental oxygen. But at her follow-up appointment on Monday, her oxygen levels were low, so Dr. Everitt (Daphne’s official cardiologist) instructed me to put her on the smallest amount of oxygen required to maintain her sats above 75 percent and asked me to call if Daphne needed over 3/4 LPM.

I started Daphne on just 1/32 LPM, but by Wednesday night, she was up to 1 LPM. By that time, it was after office hours, so Will and I spent 30 minutes debating whether we should contact the on-call doctor or wait until morning. Ultimately, I did what I always do: I called. I don’t like sounding like a hypochondriac, but I’d much rather be the mother who called when it wasn’t important than the mother who didn’t when it would have made a difference. I worried that calling would result in another trip to PCMC and another hospital stay. But after some debate, the on-call doctor told us just to observe Daphne overnight and call Dr. Everitt in the morning. By the time I got a hold of Dr. Everitt on Thursday, Daphne’s oxygen requirement was down to just 1/4 LPM.

No one can explain Daphne’s strange cycle of decline and recovery. We’re just grateful she always seems to rebound.

Will I ever stop overreacting to small changes in Daphne’s behavior or monitor results? I’m a natural worrier, so I doubt it. Even when everything is going great, I’m hyperaware of her heart condition. I’m sure this hyperawareness will diminish over time, but I bet I’ll think about her health and check her for signs of decline every day for the rest of her life. Here’s hoping that’s a very long time!

Miracles Have Not Ceased

Since I wasn’t able to attend fast and testimony meeting on Sunday, I’d like to take this opportunity to share my testimony with my family and friends.

Today my heart is filled with gratitude to my Heavenly Father. The events of this past week have reminded me, once again, that He is intimately involved in my life. He knows me, He knows my family, and He knows my new daughter. He loves us, and He has big plans for our family. He wants more from us and for us, and He has sent us a special child to nudge us down a new path.

Over the last weeks, He has granted Will and me peace in difficult moments and offered us hope through the power of the priesthood. We have already been abundantly blessed for welcoming Daphne into our home, and I know that many more blessings are in store.

Heavenly Father is a God of miracles, and our family has witnessed His marvelous power firsthand. A week ago, we were told that Daphne’s first surgery would need to be repeated. But last Wednesday, she surprised everyone by achieving post-surgery results without medical intervention. I’m sure acclimation to Utah’s altitude and her blood transfusion played a role, but I credit this miraculous recovery to a merciful and loving Heavenly Father. He has shown us His power, and we cannot doubt.

I’ve often heard people say, “God will never try us above that which we are able to bear.” But I think it would be more accurate to say that God will never ask us to bear a burden that He cannot help us endure. Over the last 5 weeks, I’ve come to more fully understand the scripture in Psalms 55:22 that says, “Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved.”

During our mortal experience, we are asked to bear many heavy burdens—burdens that have no earthly end, that leave us feeling helpless and broken, that we cannot imagine surviving. We cannot bear these burdens alone, but when we turn them over to the Lord, He can bless us with the courage and spiritual stamina to press on.

The past has taught me that trials often lead me down a better path—a path I could not see, a path I would not have followed on my own, a path filled with more joy and more spiritual growth. Before I was married, I imagined that the worst trial I could face would be the inability to bear children. But when this fear became a reality, it also became one of my greatest blessings. Without that trial, I would not have searched elsewhere for my two beautiful girls, who have filled my world with hope and happiness and who have taught me more about the nature and love of God than I could ever have learned on my own. God knew me well when He sent me down the adoption path.

Of course, I haven’t always endured my trials well. Before we found Daphne, we had another adoption fall through. We had been matched with the birth mom for 5 months, over half her pregnancy, so when she disappeared unexpectedly, I was devastated. For months, the grief was so overwhelming that I felt like two people living inside a single body: the dependable half went about her normal routines like an automaton; but the other half—the more loving, joyful half—curled up in the fetal position, unable to process the pain. I still had a testimony and knew that God loved me, but my sorrow separated me from God. I was afraid to let the Spirit heal my heart, because I didn’t want to let go of the little girl we lost. But over time, as I continued to read my scriptures and exercise faith bit by bit, I began to feel whole again. And that’s when God sent me Daphne.

Daphne’s medical condition comes with many new fears, and every day, I wonder how long she will be with us. The answer is beyond my control, but it is not beyond God’s. He will preserve her until she completes her earthly mission, and that is all I can ask. Our failed adoption taught me the loneliness of despair, so this time I choose hope and faith.

I feel honored that my Heavenly Father would believe me capable of handling the uncertainty, the fear, and the grief that will undoubtedly come with caring for Daphne. He has entrusted me with two very special spirits, and I feel a sacred obligation to live up to His expectations. Despite my shortcomings, I hope that I will become the mother my girls deserve and that I will make my Heavenly Father proud. I know that if I do my part, we will all be together in the eternities.

In the name of Jesus Christ, amen.