Laughing, Weeping, Living

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

The Time is Ripe

Well.

It looks like my last post on this blog was almost two years ago. That’s an eternity on the internet. The truth is, I started this blog while pregnant with Agnes, and I wrote about life as a young, pregnant mother. Then I wrote about Agnes, and after she passed away, I lost my voice. What was I supposed to write about? I wanted to write about how life continues in a family after a child dies, how we learn to grieve and live with the loss, and find graces and meaning, and yadda yadda yadda. But I couldn’t write about any of that, because it was a struggle to process all the feelings for myself, much less for an audience. I made it about six or eight months after Agnes passed away before I gave up. I didn’t really decide to give up, but. You know.

So, two years passed. And here I am again. Jeremy and I did a huge thing earlier tonight. We stood up in front of a room full of 120 people and told our very personal story about Agnes. I admit, I cried during our talk. It was a scary talk to present. I’m really glad I wrote out my notes in complete, coherent sentences because I needed those things while I was speaking. We stood up and spoke from the heart about Agnes and how she changed our lives. I think this marks a turning point for us, and for me. It has only been two years, but we put in the work. We grieved hard core. We processed hard core. Those scars will always be marks in our souls, but we have a Saint Baby Agnes to pray for us, to help us continue healing, an ongoing event.

If anyone from that talk earlier tonight is here now, welcome. You can scroll down the page to the “tag cloud” and click whatever you want to read about.

I think the time is ripe now. I can start to find things to share again. I would like to find things to share. Thank you for visiting my blog, and I hope to speak with you again shortly.

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Close to a Turning Point

Today marks six months since Agnes joined the heavenly choirs. It is difficult to think about that time passing. On the one hand, it feels like we had her only last week, and on the other hand, it feels as if she has been gone for much longer. We think about her every day, and Stephen too. We recently uncovered a few blurry snapshots from Agnes’ time in the NICU at the bottom of a stack of papers in our desk. Stephen saw the pictures and said, “Ooooh! It’s Baby Ang-is!” We are trying to let Agnes show us how to live out her legacy.

It is on my mind that we are near to a turning point in our journey of life after Agnes. Next month she will have been gone for as long as she was alive. In September she will have been gone for longer than she was alive.

That is difficult to accept. We have become accustomed to coping as a family that recently lost a child. After she has been gone for longer than she has been alive, we will become a family that once lost a child. It will be a change we have to navigate, a change I am not looking forward to.

Our grief counseling has been going well up to now, and we plan to continue. We will be meeting our new counselor next week as our current one is leaving the facility to pursue another area of her field. We are learning to cope with trigger moments and redirect our attentions to help manage overwhelming emotions. We are making progress on the road to healing, but the road is not straight. Sometimes there are back tracks or loops, but we are on the way. The next few months will be telling, but hopefully we will be able to find our way through with the help of our support network, and the grace of God.

Baby Agnes, pray for us!

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Happy Earthly Birthday

Today is Agnes’ first birthday. She would be one year old. I remember the day of her birth vividly, the anxiety, the fear of the unknown, the discomfort, and the excitement at the end of the labor when Agnes decided she had to be born Right Now. The pain. The anger that I couldn’t see her right away. Asking again and again when would I get to see my baby.

This past year has been a roller coaster of extreme highs and extreme lows. Caring for Agnes at home was fraught with high pressure need for attention to detail. Caring for Agnes in the hospital often became our routine. The hospital was our second home. The medical and social work staffs became like family for us.

The past week leading up to this date have been difficult for us; we have been sad and dreading today. Now that it’s here, I’m not sure how I feel. Maybe I’m relieved that the day is actually here and I don’t have to anticipate it any more. We made a loose plan to have a party to commemorate this day. We are buying an ice cream cake and my parents will come over. Today is a day to be simply endured; I can not hope to enjoy it. But I’m sure this first one will be the most difficult to endure. I know it will get easier with time.

In remembrance of Agnes, here is a link to her birth story.

Agnes will always be a huge part of our lives, and we will continue to mark her anniversaries of birth, on earth and into the heavenly kingdom. Agnes changed our lives, and her legacy continues to flourish through us and through all the people whose lives were affected by our little saint.

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Merry Christmas from Agnes in her cute booties.

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Other People’s Babies

You know it’s spring time when all the ladies you know start having their babies. Several of my facebook acquaintances recently gave birth to their beautiful new babies, and the newborn photos are adorable. The kiddos are so cute, and sleepy, and they have sweet little hands, and I could just eat them up. The little boys wear hats with an owl face and the little girls are in cute pink ruffles. I really like seeing these children of my friends. I am happy for the families who welcome these babies.

When Agnes was born, I joined a couple online networking groups for support. Mommies of Miracles and Moms of Trach Babies are the two main groups that I joined. I am still linked to these groups since they encourage the moms whose children have passed away to stay in touch with the community. I have been able to comment on a couple questions that have come to the discussion board, and it does help me feel connected to a community. The members of these groups submit charming photos of their “miracle” children with complex and often debilitating medical needs. Children in wheelchairs, children who can’t talk or see or hear, children who are dependent on feeding tubes, trachs, regular I.V. treatments, children who require multiply surgeries and hospital stays. Beautiful children who are always the light of mommy’s eye, and she loves this child so much, and she would do whatever and anything to help this child have a better life.

I love to see pictures of these children, too, the children who are alive despite grim diagnoses and shortened life expectancies. I love reading about how these children have overcome difficult circumstances in order to thrive in their own special way.

It does get really hard for me, though, to read about these miracle children. Harder than reading about healthy babies. My friends’ healthy babies are beautiful but it’s the stories of the medically complex babies that break my heart.

Earlier this week I saw some absolutely gorgeous photos of a little boy in the Mommies of Miracles group, and he has a very similar genetic condition to Agnes. Not the same, but very similar. His story was full of uncertainty, but he now appears to be thriving with the help of a feeding tube, and that’s it. His eyes were so big and blue, and he looked so alert, and he looked like Agnes would have looked if she ever opened her eyes. And he’s still alive. And doing well. With a condition so similar to what Agnes had. And it’s stories like his that are so hard for me to see. I am happy for that little boy and his family; he is a beautiful child. But I am also intensely sad and a little bit jealous.

This experience makes me wonder if I should still stay connected to these groups. Is the connection helpful for me or does it simply bring heartache? I don’t know. I love seeing the photos of miracle babies, but each one is a reminder that my miracle baby is not here anymore. I can cheer on these children and pray that they continue to beat the odds, but at the same time I am painfully aware that my child did not beat the odds.

Baby Agnes, pray for me.

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Cookies and Kittens and Other Cute Stuff

Hi all. We’ve been busy around here the past week or so.

First before I do anything else, here is Agnes’ grave marker! It was installed in time for us to visit on Memorial Day. It is so pretty. We are very happy with it.

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Octopus and shark cookies, with interested facial features.

Octopus and shark cookies, with interested facial features.

Okay. Since I made those cute lamb cookies for the Holy Ghost parish Easter dinner, I’ve been waiting for an excuse to make more cute cutout cookies. Finally this week I found an excuse: the celebration of Stephen’s baptism day! He was baptized on May 28, 2011 when he was just barely three weeks old. We want to celebrate these sacramental anniversaries in our family, so we took the opportunity to throw a little party, complete with cute animal cutout cookies. I wanted to do octopuses and sharks because those cutters appealed to me this time. If you are interested, the set of cutters I bought is this one from Wilton. It has any animal you could ever want. Any. Animal. The cookie recipe I use now for these cutouts is the “Glazed Butter Cookie” recipe from The New Best Recipe Cookbook by America’s Test Kitchen. I haven’t talked about those guys for a while, but I want you all to know that they are still a big part of my life. Especially now that I can’t live without these cookies. I like this recipe because the dough is easy to work with, you don’t have to chill it for hours before you roll it out for cutting, plus the directions say to roll the dough between two sheets of parchment which is pure genius. Nothing sticks to anything and the dough rolls out perfectly even with very few tears. That’s “tears” rhymes with “pears” not rhymes with “beers,” though this recipe certainly cuts down on that kind of “tears” as well.

Nap time

Nap time

Also this past weekend we went to visit my Aunt and the new kittens one of her cats recently birthed. There were four kittens in the litter and we wanted to adopt one of them! It was a fun trip. Stephen enjoyed playing with all four kittens, who were all energetic and very adorable. We decided relatively quickly that we wanted to take the fluffy one, the only kitten that has long fur. We had been discussing potential kitten names for a while so it was pretty easy to decide on a name. At this point in the story I would like to stop the narrative in order to fill you in on a bit of history. As you know, we already have a cat named Sashimi. We adopted Sashimi a few years ago when we lived in Billings, MT, and we thought it was funny to name him after the Japanese raw-fish appetizer “sashimi.” Ha ha. Aren’t we funny and so witty. Anyway so. We wanted to continue the ethnic food theme with our new cat as well. We tossed around some ideas like Pakora, which is a chickpea flour fritter from the East Indian culinary tradition. We considered Cannoli. Taquito. Nori. Ramen. As you can imagine it gets ridiculous very quickly. Frijoles Refritos, “Frito” for short. Combo Plate #2. Gravlax. Wonton. I refer you back a few lines [ha ha aren’t we funny and so witty]. We named the fluffy kitten Pakora and vowed to bring her home with us.

Oh, but all the other kittens are so cute and look at that one, he really gets along well with Pakora and my Aunt says he’s even more snuggly and I really wanted to get another snuggly kitty. But then, if we get another kitten, what should we name it? Gravlax? Jeremy said no way. I quote directly from Jeremy’s mouth: “That is the worst name for a cat ever.”

Gravlax (left) and Pakora (right)

Gravlax (left) and Pakora (right)

Guess what we ended up naming the kitten? Gravlax! I’m so happy we did because every time anyone says the name Gravlax everyone in the room kind of titters. It’s hilarious. Also, it’s very much in keeping with Sashimi’s name, since Gravlax is a fermented fish that is also eaten raw. I think the name is awesome. Pakora and Gravlax. It rolls off the tongue so well. And they really do get along well with each other. Sashimi did take a few days to get used to the idea of two new kittens, but I think they have already worked out their differences. They have all played together a few times, and they can all eat in the same room without a throw-down occurring.

stephen and iconsFinally, we hung up our icons in our new house. It took awhile to get around to it, but I’m so happy we finally did it. It looks great! There is plenty of room to continue adding icons as our collection grows. So long as add to it symmetrically! We plan to have icons for each of our children’s patron saints, as many as that may be, plus whatever else we decide to add. I’m excited for the possibilities.Gravlax likes Mary!

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Face to Face

I realized today that one of the main reasons I’ve been quiet on the blog recently is not because my life is so busy. No. It’s not because nothing meaningful is happening around here, that’s not it either. I think the big reason I’m not posting on the blog is because Jeremy and I are participating in grief counseling. I am able to take the inner conversations that I used to hash out on the interwebs, and I hash them out with our counselor. This activity is exceedingly important and beneficial, and I didn’t fully realize how beneficial the counseling is until I made the connection to my silence on the blog.

We’ve been meeting with the grief counselor for about six weeks, and that pretty much lines up with blog silence. It’s really funny to me that I find myself appreciating the experience so much, since Jeremy all but dragged my the hair into the first meeting. *Sighhhhh* “Okay, honey, if it’s that important to you, we can go…”

The first few weeks of meetings, we just got to know our counselor (we have the same lady every time), and we told her the background of us and Agnes’ story, and what happened when she died. Then we worked on a list of goals so we know what we are working on, and so we can know when we are done. That was hard. How will we be able to know when we are healed enough that we don’t need grief counseling anymore? We had to list specific, concrete markers like: right now I cry at trigger moments twice a day; I’ll know I am “done” when I cry at trigger moments only once a week. For example. We have to learn how to recognize a trigger moment is about to happen so we can redirect ourselves or prepare, and thus manage our emotions. That is a big one. For me, trigger moments happen all the freaking time. If you ever see me weeping in the grocery store parking lot or sniffling during choir practice, now you know why. Trigger moment. I keep saying that like you already know what it means. You can probably guess, but the trigger moment is something that makes me think of Agnes, or something that makes me feel sad, or something that pushes me close to the edge of tears. So basically, anything.

The other thing we’ve been doing with our counselor is, she wanted a list of names of all the people whose lives were enriched or touched by Agnes in any way. That would be a completely separate post. I think I will do it; the list is very impressive. And our counselor wants us to think about all the positive things that are coming of our experience. She told us that even though we feel like it is impossible to even get up in the morning and do our stuff, people look at us and are filled with hope because, if we can overcome the monumental loss of our baby enough so that we are even able to drag our butts out of the house, then they can surely overcome whatever trials they have in their lives. So, we’re supposed to think about things like that. Hope. Inspiration. Are we inspiring? I don’t know. I don’t feel that inspiring.

Anyway, it’s very good that we are meeting with a grief counselor and having these conversations face to face. She is trained to ask the right questions and draw out what we really need to say. She is encouraging and receptive, affirms our feelings and tells us we are totally and completely normal for feeling the way we do. She helps us to see all the sides and she helps us draw comfort from our memories rather than pain. Face to face. A living, feeling person is far superior for this sort of thing than a glowing screen bearing a vague promise that someone might connect.

On a slightly related note, I just want to mention that we are pretty excited because the monument company called us this week to say Agnes’ burial marker is finished; the cemetery will install it soon. This is huge because every time we go visit Agnes’ grave site we’re like, “….I think this is it…maybe…or over here?…This looks right with that tree there….I think I remember these other names being near her…” It’s a nightmare! When I say a prayer over the place where Agnes is buried, I want to be darn sure she is where I think she is! Plus, we’re excited because her stone is really pretty. We’ll definitely take a picture once it’s installed and I’ll put it up here. No worries.

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An old picture of Agnes I wanted to share again. Because she’s cute!

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The Lies We Tell Ourselves

This past week has been crazy and busy. We have been on the run, which is nice because there were a couple days in a row that I didn’t cry about Agnes even once. So I guess I’m doing okay.

Ha.

On Thursday we took some time out to go up to Cornerstone of Hope, a non-profit faith-based grief counseling organization in Independence. This organization was founded by a Catholic couple in 2000 after the death of their little boy. They looked for something that would help them process their grief after the death of their child, but there were very few options. No one wanted to help grieving families acknowledge death. So they started their own gig. Jeremy and I found out about Cornerstone of Hope a few weeks ago when we went to the Marriages of Grace retreat. Cornerstone of Hope was a program sponsor with an ad in the retreat booklet. We would have missed it there, if one of the other couples on retreat hadn’t pointed it out to us and told us what the organization was about. The ad focused on some summer camps for boys and girls, so we had no idea it was also a grief counseling organization.

After the retreat, Jeremy spent some time looking up information about Cornerstone of Hope. I let him because I’m a supportive wife, and even though I don’t need any help processing my grief, I knew Jeremy had been feeling kind of down and maybe it would be good for him.

Ha.

We went together to an intake meeting on Thursday and the therapist asked us to tell a bit about Agnes’ story and why we were at Cornerstone of Hope looking for help, and what we thought we might benefit from as far as types of therapy or services they might provide. The therapist also took us each through a 15 to 20 point grief symptoms checklist, I don’t know…I guess to see how much in grief we are.

Are you experiencing any of the following:
Appetite changes?
Lack of energy?
Changes in sleep patterns (too little of not enough)?
Headaches or general achiness?
Inability to make decisions?
Lack of motivation?
Loss of interest in hobbies?
Forgetfulness?
Urge to cry unexpectedly or intense crying?
Change in social habits?
Feelings of loneliness?
Isolation?
Feelings of worthlessness?
Feelings of helplessness?
Anxiety or panic?
Anger or irritation?
Disorganization?
Lack of focus or concentration?
Recurring thoughts or ideas?

I think I answered “yes” to all but four or five of the items. The moral of the story is I thought I was doing well, but a professional assessment has revealed that I am a wreck. I was living in a lie that I had crafted for myself. It is true that I had a lot of time to pre-grieve while Agnes was sick in the hospital, but that was grieving for something different. We have been grieving different things ever since we had that first ultrasound of Agnes back in February of 2013. We grieved the loss of an uneventful pregnancy, the loss of a totally natural birth, the loss of our joyous homecoming with a healthy baby, the loss of all Agnes’ milestones, the loss of her cry. She never cried. You might think a baby crying is just loud and irritating, but I would give anything to have heard Agnes cry even once.

Anyway, Jeremy and I are going to start grief counseling because we both would benefit from it. I was too proud to admit that I needed help; going to this meeting was very close to the last item on my “want-to-do” list but it is good that Jeremy dragged me up to Independence. I’m not really in a position to give advice, but I would say that if you think your mood or behavior is at all different from how you remember yourself, get a professional assessment because if you do need help, you are probably not in a position to recognize it for yourself.

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Reflection: Moving On

I’ve always been pretty good about moving from one phase of my life to another. I am easily able to tidy up, say goodbye, and close the door on one phase, then quickly turn my attention and energy to getting settled in the new phase. Graduating from high school was easy. A few parties, exchange email addresses, pack for college, great new phase of my life. Finishing college was not as easy, but still manageable. More sadness was involved with parting from stronger friendships. But in the end it was not too difficult to look ahead and turn my attention to the new phase of grad school. Finishing grad school and moving to Montana was hard. I had to part with more great friends and leave a place I liked quite a lot. But here again, it was pretty easy to move on. Moving from Montana to New Mexico. Really hard. Less manageable and I’m still processing that. Moving from New Mexico to Ohio. Hard but because there was so much involved in that decision, there was not really time for anything but a quick transition.

I will be the first person in a long line of people to say that I am horrible at maintaining friendships over these “phase breaks.” It’s wrapped up in my strategy to move beyond a sad situation and focus on the future. I was able to overcome sadness with each transition because I could mentally and emotionally pack up everything associated with the former life and put it away. I miss the people I’ve left behind and I wish I was better at keeping in touch, but on the other hand I’m glad I am able to put away the past and not let it get in the way of my current life. The people I have managed to keep up with, I truly enjoy our friendships! So I don’t know why I can’t do that with everyone. As an aside, if I’ve lost track of you it’s not because I don’t like you! I’m sure I would love to catch up. I will work on improving my nature. I’m not describing anything unhealthy here, at least I don’t think so. I have just learned that it’s pointless to dwell on the past and feel sad  or regretful about events that have already happened.

Anyway, so, all those transitions I’ve described above are about moving from place to place and shifting life stages. Moving on after the death of Agnes has been both similar and different for me. On the one hand, I feel like it’s been pretty easy to do things and live life normally and give my attention to other people and tasks. On the other hand, weird triggers still reduce me to tears. I’m not surprised and before anyone says it, I’m not being too hard on myself. I’m not upset or frustrated with myself that I cry, I’m only surprised that it doesn’t happen more. Why aren’t I a perpetually tear-damp wreck barely two months after the death of my baby? Because that’s not how I process transitions, that’s why. I take care of all the feelings then set the whole business aside so I can focus on what’s next. If there are any lingering emotions, they are usually not debilitating and I can deal with them while I carry on. My lingering feelings about Agnes are debilitating. They knock me out no matter when or where they strike. It’s different for me. I don’t necessarily mind one way or another.

I think the most helpful thing someone has said to me is, “you don’t get over it, you get used to it.” Sometimes I feel like I am becoming used to Agnes being gone, but then suddenly it is a fresh wound again. I can laugh with friends over coffee in the church basement after liturgy, and a mere two hours later I will be sobbing in the car because I drove past an ambulance. I can be totally focused on the symphony chorus rehearsal, and suddenly the director will tell an anecdote with the name “Agnes” in it and I can’t sing for ten minutes.

My grief process and “moving on” is uneven which is a new experience for me, but I expect someday I will get used to it.

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Reflection: I Don’t Feel Like It

Every day this week I have come in to the office several times a day and said to myself, “I really should write a blog post today.” It would be good to get back in the groove of regular blogging. It would be good to write about how I’m doing. Lot’s of people care about me and they might like to know what I’m up to.

But you know what, I don’t feel like it. Specifically, I don’t feel like reflecting. It’s hard, it makes me cry, and I would much rather be devoting my energy and time to less difficult activities that make me cry less.

Well yesterday I spent my whole morning helping at church with the pyrohy business they do, and it was really fun. Then I came home and life was suddenly horrible. I don’t know what happened to me but all of a sudden I was trying to throw together a pot of soup and even that was too difficult. Tears. What the hell? And today we went to Divine Liturgy and everything was fine; but this afternoon I put together our monthly budget which I’ve done many times before, but this time it was extremely difficult and nearly panic-inducing. I wondered aloud when might I start to feel capable and effective again.

So with all that being said, I don’t really feel like I want to spend my evening writing a reflection on how I’m feeling, because it’s really a downer. I know I shouldn’t expect to be “over” my grief yet, and I don’t resent myself for feeling sad and weeping for Agnes from time to time. However, I do wish I was more with-it around the home. There are tasks to be done and I am the one who has to do them, if I want them to get done. When I go around feeling incapable and sad, the simple tasks are overwhelming. Then I feel even more down because how could I let such a simple thing upset me so much? Then all of a sudden, I’m shedding bitter tears over a pan of splattering onions, and someone walks in and says, “Okay, so what’s wrong?” as if I have any idea what the answer may be. I could diagram it for you:

I am upset because:

  • The onions are splattering and the grease burned my hand.

Due to/because of:

  • Poor sleeping and possible hormone imbalance

Due to/because of:

  • Stress and possible mild depression

Due to/because of:

  • Unresolved feelings of grief about my deceased child.

 

So, long story short, I can get along quite well as long as nothing demanding is going on. I can act normal in company at a public location, and it seems as if I am handling my grief quite well. As soon as something demanding happens, all bets are off.

We’ll get through it, and I know you are going to say I need to be easier on myself. I will try. In the meantime, maybe don’t expect frequent posts. I’ll still try to buzz in a few times a week. Hopefully once our house deal gets closer to closing I’ll be bubbling with all that kind of news. Thanks for stopping in to read, thanks for “listening” to me vent.

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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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