Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

One Month in Heaven

Today marks one month since Agnes passed from this earth into the eternal kingdom. It’s hard to believe one month has passed already; it feels like we lost her only yesterday. On the other hand, we have kept ourselves busy with guests, and home buying, and projects, and it’s hard to believe only one month has passed; it feels like a longer interval has passed.

I still miss Agnes every day. Sometimes a random little thing will remind me of her. Like yesterday at church while I was singing in the choir, I looked at one of the other singers while we were chanting and I remembered a conversation I had with that singer on the day of Agnes’ funeral. Bam. Sad about Agnes. Or walking around a department store I may happen down the aisle where baby clothes are displayed. Bam. Or driving towards downtown Akron on the road we always took to get to the hospital. Bam. Or scanning the obituary page of the newspaper and I see the name of the funeral home that handled our arrangements. Bam.

The other hard thing is not unexpected: now that I have recently lost a baby, every lady everywhere has a baby, or is about to have a baby. Many of my friends are expecting new babies. Many of my friends currently have adorable infants. Babies are everywhere, and my arms feel empty without my baby. I go back and forth between desperately wanting a replacement baby, and being terrified to ever have another baby ever again. And of course, once in a while, I am actually at peace with the current status of my children.

This is actually a "dry sink" but the plastic changing pad fits perfectly!

This is actually a “dry sink” but the plastic changing pad fits perfectly!

Jeremy and I are trying different ways to keep Agnes’ memory alive, especially for Stephen. We have photos of Agnes displayed in the house, and of course Stephen has his own little photo in his room. Plus we always mention Agnes at bedtime for him, saying that she’s with Mary and Jesus watching over Stephen and protecting him. Plus I wear my cool necklace with my three kids’ names, and I show it to Stephen when he notices it. We also felt inspired to make a donation to our church in Agnes’ memory, so we purchased a diaper changing table for the bathroom at the church. There was no convenient space for baby diaper-changing except on the floor, plus the parish is trying to find ways to attract more parishioners. Jeremy and I thought some family-friendly additions might help along those lines. So, now we can remember Agnes every time we use the bathroom! And she can help bring new young families into the parish!

It’s a daily struggle to find peace and joy, but we are doing okay. We will always be marked by this process of losing a child, but I don’t think it will take us out completely. We are carrying on with life and finding ways to fill our days.

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Charity and Entitlement After a Family Tragedy

There are a million things to worry about after the death of your child, and you have to deal with all of them through a fog of grief possibly mixed with anger and guilt. Your family becomes quite an easy target for sympathy, and honestly, it is welcomed. If someone wants to cook you casseroles so you don’t have to make dinner, great! If someone offers to play with your other kids so you can lie abed and be sad for another hour or two, awesome! Someone offers to help pay for your deceased child’s funeral expenses. Someone offers to buy you a load of groceries or some gasoline. All these people are very nice and trying to express their support and how much they care for your family.

It is not easy to become someone who can graciously accept charity. No one likes to admit that they need help, and when folks offer to do something for your family–and it fulfills a requirement that you actually couldn’t have filled on your own–it is a little embarrassing to be so frankly grateful.

And after a point, so many people are doing nice things for you, that you stop expressing gratitude every time. How can you possibly be verbally grateful each and every time a person does something for you? It’s exhausting! And then, it becomes almost expected. “My baby just died, so it is only natural that someone would offer to bake a pan of lasagna for my family.” But you have to keep being grateful, and all the people who do nice things need to hear you say, “thank you,” even if it’s the 249th time you said “thank you” this week.

It is really nice to see so many warm hearts and people moved to be charitable and helpful, and to support a family in need. It is nice that what could be a tragic event has also served to give many people an opportunity to perform works of mercy and find grace through giving of themselves. But this is also an opportunity for my family to find grace through humility, receiving gifts and giving thanks, every single time.

We have been extremely blessed by the generosity shown to our family and the outpouring of support after Agnes died. Several people have given to us enormously and a meager “thank you” isn’t even enough to express our gratitude. We can give gifts back as a way to express gratitude, but the whole point of charity is that you don’t expect a gift in return. On the other hand, it is good for generosity of heart to go back and forth, back and forth. What is the right thing to do? We are finding our way and trying to do the right thing and sometimes we make a mistake. Just know that we feel so overwhelmingly blessed by everyone who has supported us so far. And we hope to repay the kindness over time, and again and again.

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Grieving Agnes

Grieving for Agnes is a tricky business. For one thing, it is always tragic when a baby dies. We grieve her life but also the life she never got to live. For the second thing, we should be joyful because she is now in heaven in the arms of Mary and Jesus, and that is where we all desire to be and boy, isn’t Agnes lucky to have got there so soon. And for a final thing, now my family has a little saint whose main goal for all eternity is to intercede for us, her family, and help us to be peaceful and holy and ultimately she will help us get to heaven too so we can all be together. And that’s awesome.

But of course, I am still sad. Very sad. Not all the time, and don’t think I just walk around the house crying all the time, because I don’t. It’s more like all I want to do is lay on my bed and stare at the light on the ceiling. I don’t even want to sleep, I’m not sleepy. I certainly don’t want to do anything difficult like take a shower or reheat food for lunch. But I do these things because I have to. I don’t even really want to play with Stephen or give him a bath or sit and eat with him. I do play with him because he brings me joy, but I’m doing it only because I know that if I do, I will probably feel better. I have no drive to do these normal things, but I do them anyway out of obligation. So maybe that means I’m doing okay. I feel like I am doing okay, all things considered.

But I miss Agnes a lot. I regret that I didn’t make more of the time we had with her. I regret not holding her more. I regret that I left her in her crib when she was asleep because I didn’t want to disturb her. I regret cheerfully turning over her care to the night nurse every night she was home. I think about holding her in my arms, especially while she was dying and those are the times I cry.

It is true that Agnes is now in heaven, and she is already being venerated as Saint Baby Agnes by a few people. Isn’t that sweet? When I think about her spirit being with me and helping me to find peace, I do feel peaceful. She was definitely helping me and Jeremy on Wednesday and Thursday while we were at the calling hours and the funeral liturgy. I felt peaceful, and even a little joyful that Agnes is happy with Mary and Jesus and all the saints, hanging out with angels and enjoying a pain free existence. Her life on earth was so hard and I can’t imagine her discomfort every moment. Now she doesn’t have to endure that anymore, and I am happy about that and relieved for her sake.

So I know all these things and I can get through it pretty well when I talk with someone now about Agnes being a saint in heaven and she is “healthy” now, whatever that means for spiritual beings. But it will take a concentrated effort to keep on doing normal stuff. I can guarantee that I will still cry at apparently random times throughout the day for a while. My family can still use all your prayers, and now you can pray to Saint Baby Agnes to intercede on our behalf and to come to our aid.

Now Jeremy and I have two out of three children in heaven as our particular saints. [Most of you may not know that we had a miscarriage early in a pregnancy a few years ago. The baby between Stephen and Agnes]. We don’t know why we have to be so lucky; we wish we weren’t so lucky, but there it is.

Saint Baby Agnes, pray for us. Saint Baby Joseph Mary, pray for us. All you Angels and Saints, pray for us.

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All the Doctors and Nurses

And Nurse Practitioners and Social Workers and assorted Therapists.

Sydney knitted a beautiful prayer shawl, which we kept in Agnes' bed.

Sydney knitted a beautiful prayer shawl, which we kept in Agnes’ bed.

Agnes had a huge impact on many departments at Akron Children’s Hospital. I think there were only a couple units that had no dealings with her. On Friday as we were reflecting on Agnes’ life and preparing for her end of life, I began a list of all the people who have cared for Agnes throughout her life. I only wish I could remember everyone; there are many faces I can see in my memory, but I don’t know the names anymore. My family was so blessed by the sensitivity and concern of the PICU staff during Agnes’ final days. We are especially thankful for the nurses who spent shift after shift caring for Agnes during her final admission, particularly Eric and Kathy.

100_2019All 173 names I can remember before memory fails:

Katie, Maria, Nicole, Colleen, Lori, Kristen, Missy, Molly, Sarah, Susan, Linda, Allison, Kristi, Denise, Helena, Marlene, Denise, Hannah, Heather, Katy, Eric, John, Betsy, Matthew, Earline, Jackie, Betty, Susan, Reyhanna, Chris, Mary, Ashley, Jessica, Anna, Josh, Carrie, Laura, Kathy, Melissa, Karen, Tracey, Megan, Kristen, Vicki, Joanna, Megan, Dawn, Chelsea, Leanne, Amy, Lisa, Taryn, Elizabeth, Kari, Christian, Tara, Laurie, Ashley, Kayla, Julie, Kaylee, Chris, Nate, Rebecca, Julia, Christian, Wade, Brenda, Angela, Melissa, Zach, Jennifer, Angie, Ralph, Leah, Jennifer, Penny, Darla, Linda, Alyssa, Karli, Bridget, Amber, Lois, Christine, Amber, Cathy, Hannah, Carrieann, Amy, Karah, Melissa, Tammy, Kelly, Melissa, Joe, Beth, Melissa, Ann-Marie, Julie, Lisa, Sofya, Cathy, Tatiana, Kelly, Heather, Samantha, Joanne, Karen, Kevin, Tracey, Holly, Jenna, Caroline, Nancy, Leslie, Usha, Michael, Cathy, Dave, Mona, Mike, Emily, Jennifer, Marc, John, Tsulee, Kim, Cortney, Ryan, Chris, Urmila, Maria, Jim, Heather, Roger, Debbie, Vivek, Cassandra, Mark, Alison, Rajeev, Starla, John, Robert, Tim, Todd, John, Christine, Ted, Melissa, Gregory, Todd, Haynes, Scott, Becky, C.R., Vivek, John, Samantha, Wassim, Jaime, Elizabeth, Cooper, Jessica, Danielle, Stephen, Ibrahim, Andrew, Leslie, Patrick, Diana, Lauren…

Agnes' final footie sleeper. So perfect.

Agnes gets dressed to meet Jesus in a perfect footie sleeper.

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Up in the Air

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

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Terminal

Yesterday Agnes took a turn for the worse. Her overall condition has been described to us as “critical stable.” And, “fragile.” And, “terminal.”

We have heard the words, “there is nothing more we can do except help her to be comfortable.”

Agnes is comfortable right now, and she is stable within her very fragile balance, but it is also clear that her body is failing.

After all this runaround about her shunt, it turned out not to be the deciding factor. Her ongoing trouble with pulmonary hypertension is what now her “terminal” condition.

In a nutshell what is happening is the pressure in the blood vessels going to her lungs is so high, that the right side of the heart has to work extra hard to move blood. The right side is enlarged, to the point where the left side is being compressed. Agnes’ heart isn’t able to keep up and so blood is backing up in her veins, unable to get to the heart to be re-oxygenated and sent through the arteries to her her body. Blood is backing up and with nowhere to go, fluid from her vascular system is seeping out into her tissues. The slowdown in circulation is affecting her organ functions. There is not enough blood flow to her liver, kidneys, and intestines. She is not absorbing nutrition from food, or her medicines. Her lungs are very stiff because of the inadequate blood flow so her ventilation needs a lot of support.

They could try to fix her shunt, but with organs in the process of failing what good would an operational shunt do for long term? The shunt is small potatoes. The biggest issue now is that the problems are affecting nearly every system in Agnes’ body.

She is dying.

There is always time for a miracle, and we haven’t given up hope for one. We are also talking with palliative care about Agnes’ end of life options and what we feel like we could or should do. We are always striving to make the best choices for Agnes. Right now she is behaving so we have some time to think and pray. There really is no telling how much longer Agnes will hang on. She is the boss lady. In any case it does not appear at this time that Agnes’ death is imminent–at least not in the next day or two. So that’s a relief.

Fr. Sal did allow her to receive Eucharist last night, in her own way. She got to lick the Body of Christ and I consumed the rest of it. I know she doesn’t need that sacrament because she is a baby and pure and sinless, but I wanted her to have it.

I do plan to write a beautiful post about what I’ve learned from Agnes, about the meaning of suffering and the power of prayer and all that stuff. When I feel like I can get through it! Hopefully I will be able to manage that soon.

Thank you all for your continued prayers.

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