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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I Suppose It Could Have Been Worse

In the grand scheme of travel days, there is a gradual continuum between smooth trouble-free airline travel, and frustration-fraught, delayed travel. Also on the continuum are accident-complicated and outright emergency situations, which of course, lurk on the horrible dark end of the travel continuum.

As some of you may know, my family embarked upon an airline trip to California to visit Jeremy’s parents. Our itinerary was moderately convenient, leaving at a very early 7 a.m. from Akron. A connection in Atlanta would lead us to Orange County, where we would arrive in time for lunch. We hustled our very sleepy toddler out the door and made it within a comfortable time frame to buy coffee at the terminal, find our gate, and enjoy some snacks we had preparedly packed in our carry-on bag. We were literally next in line to early board with a young child, when the word came down the jet bridge to hold up, there was a problem. The lady in a wheelchair who had already boarded even deplaned as well. Turns out there was a problem with a “non-critical” item of machinery, some small generator that powers the a/c and ventilation. The maintenance team would try a couple things and hopefully we would be on our way shortly.

Well, non of the ideas worked, so they decided to fly in a replacement part from Atlanta. They apologized for the delay, and began rebooking everyone’s connections from Atlanta. We got a later connection from Atlanta, but we had to switch our ultimate destination to LAX rather than Orange County. They sent Jeremy out to the check-in ticket counter to switch our luggage to arrive at LAX.

The replacement part arrived. Guess what? It didn’t work. So they decided to drive in yet another replacement part from Detroit. I could have told them that if two of the same part don’t work, the problem is probably somewhere else in the plane, but they didn’t ask me for my opinion. Meanwhile, the airline agents supplied drinks, snacks, and pizza in the gate area.

As the flight departure time continued to creep later and later, we decided to rebook again. This time we opted to abandon Akron and depart from Cleveland. We were able to book an itinerary with a different airline, departing from Cleveland to Chicago O’Hare departing at 5:20 p.m, and from there on to Orange County. It would be a late arrival time, but at least still a Sunday arrival. We went back to the ticket counter to retrieve our luggage, only to discover that it was already in Atlanta, on its way to Orange County. Despite Jeremy having switched it to LAX, but whatever. We also copped major ‘tude from the airline agent who was obviously very put out by all the changing travel plans. Still, she had no excuse. Silver lining, at least we could go on our way with carry-ons only, which would make things a bit more streamlined.

In the midst of all this toil and strife, and my increasing feeling that I no longer even desired to travel on this day, but rather go home and sleep instead, it is important to remember that it could have been worse. Maybe not a lot worse, but it could have been.

My parents graciously agreed to shepherd us to Cleveland, which meant we could leave our cars at home and avoid paying long term parking fees at the airport. We arrived in due time to board our flight to O’Hare. We ate some dinner(ish) and found our way to the gate. It began to rain while we walked through the concourse. No problem, airplanes can fly in the rain. Oh, and then we heard thunder. And saw lightning. And heard the announcement: the incoming flight that was to be our plane was diverted to Pittsburgh because of the weather. One hour delay. We needed to rebook our connection, which we were able to do, thank God, and back into Orange County! Plus the agent was even able to sit two of the seats together which meant a three-year-old didn’t need to sit alone. Hah. So we were ready.

After a couple more delays (the storm was heading east, so the plane was late leaving Pittsburgh), our plane arrived! We boarded, and miracle of miracles, we flew to Chicago. Whew. We had just enough time to change a diaper and get to the gate. The flight was on time, boarding on time, taking off on time. Big win. Things were looking up and we started to think that maybe our troubles were over.

And then this was my flight.

courtesy of twitter

Seriously, at this point I was so beaten down by the ordeal of my travel day, that this did very little to phase me. I just felt like, “I told you so,” when they announced that we were diverting to Wichita for an emergency landing. That was pretty dramatic, actually. We descended so quickly, my ears hurt. Luckily, Stephen slept through the entire thing. When we landed in Wichita, the fire trucks flanked both sides of the plane as we taxied toward the terminal. The plane stopped a few hundred feet from the end of the terminal, and we all waited to learn what was going on. The cabin pressure was fine, no one was injured, we were all just bemused. Many of us had had long travel days, so we were just trying to roll with the punches. When we landed, the flight attendant announced, “Welcome to Wichita.”

We waited and waited while the fire fighters and maintenance people assessed the problem, then we were told we much overnight in Wichita. The airline was kind enough to comp everyone a hotel room for the night, including vouchers to pay for breakfast. Good on them. See, even though we were venturing dangerously close to dark, horrible “it can’t be worse” end of the travel continuum, it really could have been worse. Really. Perspective must be maintained in all situations.

So we booked in to a hotel at midnight local time Wichita, KS. The “do-over” flight would be accomplished in the morning, TBA, using a plane that would be flown to Wichita empty for the sole purpose of taking us all to Orange County. We set an early alarm to check the flight status: 9:15 a.m. Score another 90 minutes of sleep. We enjoyed a lovely mostly-comped breakfast in the hotel restaurant and made our way back to the airport. Check in. Piece of cake. Kill some time purchasing “Wichita” t-shirt memorial souvenir. Done. Find our gate.

Flight delayed. Man oh man. Weather delay.

And folks, here is the true cherry on the top of our travel day banana split. Guess where the special plane was flying in from?

Cleveland. Man oh man.

So, to wrap up this chapter book of a travel tale, we did make it onto our special plane where the airline comped us snacks and drinks and in-flight entertainment. The flight this morning was totally uneventful, we enjoyed free and delicious airline snack boxes and movies, we managed to track down our luggage at the Orange County airport, and we are now comfortably ensconced in Jeremy’s parent’s living room. Even though the whole experience averages out to be IT SUCKED!!!, I have to say the airline agents and flight crews were all very accommodating and helpful, except for that one girl at the ticket counter. The airlines were very generous in comping materials to help make up for the inconvenience of interrupted travel.

Our day should have been, “we checked in, we flew, we arrived,” but instead we got an experience and a story. I hope you enjoyed reading about it.

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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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Happy Anniversary!

Today marks one year of blogging for me. One year ago I was living in Rio Rancho, NM and struggling to find satisfaction in my life as a housewife and mother. I started keeping this blog as a way to be mindful of the little blessings in my life, and as a way to process disappointments with some detachment. I’ve always been somewhat volatile as far as elation/sorrow are concerned, so a place where I could take a step back was helpful. I think this blog was a very important factor in my life this past year, with all the ups and downs of carrying a baby with an uncertain medical future, moving across country, giving birth to Agnes who turned out to have enormously complicated medical requirements, then ultimately becoming the mother of a deceased child. I wrote a post a while back about my family’s struggles during the past couple years, with the closing remark that hopefully the next year would prove to be less trying. I don’t know if that has happened, but I’m certain this blog has helped me to bear up under strains and trials that most people would consider to be unbearable. I’ve had my moments of weakness, as you know if you have read my blog, and my moments of strength and clarity. I won’t say I’m grateful for what this past year has brought me, but I will say this past year has shaped me into a different sort of person and taught me about what I value in my life. There have been many many blessings that came about because of the suffering my family has endured; blessings enough to make the suffering worth the pain.

At this point in my life, I am nowhere close to what I expected my life to be even four or five years ago. I never imagined I would have two out of three of my children in heaven. I never imagined that I would be living in Ohio under my parents’ roof. I never imagined that I would find fulfillment as a homemaker. But this is my life, and it does nobody any good for me to regret past choices. In fact, I do find fulfillment in my work at home, and the journey I have taken so far has made a person I can respect.

Thank you for taking this journey with me.100_2019

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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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7 Quick Takes: October 18

Linking up with Jen at Conversion Diary. Like every Friday.

1. Stephen is on a dinner-time hunger strike where he won’t eat the meal I serve. Then he won’t eat the other meal I serve him, trying to get him to eat. Then he won’t eat the meal I serve him again because I wrapped up the plate and put it in the fridge. All he wants is “cheeros” and nothing else will do. It’s frustrating, especially when others in the house opt for “cheeros” for their own dinner on leftover night. How will I ever get Stephen to eat the dinner I prepare for him if other people get to eat breakfast cereal for dinner? It’s a struggle. I’m hoping it’s a phase for Stephen. He used to be such a good eater…he ate anything I put down for him. Except kale. He’s never been a fan of kale. I try to model good eating habits and a variety of foods for him, but he does not look only to me to learn behaviors. There are three other adults in the house he observes as well.

2. We’ve had some response to our support page for Agnes. There have been a lot of people looking at the page, and so far 6 donations. We are almost 4 percent to our goal! We are so thankful and appreciative for those who have offered a gift to help us take care of Agnes and all her needs.

3. I want to start a small cookie baking project to help support my family. I will probably start an Etsy page since this looks like the easiest and most legitimate way to sell homemade goods on a small scale. I have one major question about this venture, though: how do I ship the goods? Should I freeze the cookies and ship them frozen so they arrive frozen? Should I ship them fresh with ample padding? Should I freeze them and ship them frozen so they arrive thawed? I do not know. I fear I may have to purchase some cookies from a number of Etsy vendors in the name of Research. Yes.

4. Agnes continues to be stable. They turned down the rate of the ventilator from 20 to 15 and she apparently did not notice, which is good. The plan is to reduce the rate by five each day, until all Agnes has is CPAP with pressure support, then take away the pressure support and leave Agnes with CPAP, then take away the CPAP. We’ll see how it goes.

5. I’ve been hearing a number of negative comments about people who rely on government assistance programs like EBT and Medicaid. I would just like to remind everyone that while there are of course many who abuse these programs, there are also many who genuinely need the support to make ends meet. I myself use EBT and I am so grateful. If I did not have EBT, we would spend half our monthly income on food, easily, which does not leave much left over for gasoline, bills, incidental expenses, clothing, church donations, and “emergency.” Because, you know if you only have $600 to divvy up after food, there are going to be emergencies. That’s the rules. Anyway, things like this are mildly offensive to me, and also pathetically funny that there are people who believe this kind of stuff, which it is becoming more and more clear to me: there are. lots. If such a thing can be judged by quantifying the related Facebook memes.

And my family is on Medicaid. Oh my gosh, if we did not have this, we would probably spend 1000% (one thousand percent) or more of our monthly income on medical bills.

6. It’s starting to look and feel like Fall around here! The leaves are turning colors, it’s been chilly and crisp. I love it. The heat has been on in the house, and I’ve had to wipe off the windshield in the morning.

7. I’ve got a cough that just won’t quit, and I wasn’t too worried because I have no other symptoms besides a cough that is sometimes dry, sometimes productive. Except now I’ve had it for more than a week, and the coughs really take a lot out of me. I hope I’m not infectious because my daughter has Chronic Respiratory Failure…And I don’t want to go to the doctor because I’m not sure my Medicaid is working right now since Agnes just got transferred off the MCO and back to straight Medicaid, and apparently county employees are so overworked that they accidentally transfer around whole families when one member moves, even though it seems like it would be more work to transfer multiple people…whatever. I have a dreaded phone call to make, I can see. And I’m not encouraged because apparently this happens all the time, and some ladies I’ve talked to have trouble convincing the office that the problem even exists. Sigh. Wish me luck.

Read more takes at Jen’s blog.

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GoFundMe Support Page for Agnes

People come to me almost every day asking if there is anything we need, or if there is anything they can do to help. Agnes is a very needy child, and she demands a lot of attention and care, which makes life pretty stressful sometimes as we try to balance our time with Agnes, at the hospital, paying attention to Stephen, caring for ourselves, and keeping up around the house. We decided to make this fundraising page as a way for people to lend support from a distance. It’s difficult for us to ask for help like this because we are proud and we want to be independent and self-sufficient. But the truth is, Jeremy is already working flat-out with nursing school plus shifts as a delivery driver, and I am at home with the kids so I don’t have a lot of freedom to get a job. I’m thinking of projects I can start that will allow me to contribute at a pace I can sustain while also keeping house and caring for babies. In the meantime, this website is launched. You can also find the web address in the right hand column of my blog page, under the heading “Help Our Family.” Sorry, I couldn’t figure out how to hyperlink the site in that text box!

Thank you for all the prayer and thoughtful support you have given my family so far. We are blessed to have so many kind people thinking of us and praying for a good outcome for Agnes. Prayer is very powerful and I do believe Agnes has done so well so far because of all the prayers you have offered for her. If you have been wanting to do more, here is your opportunity!

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7 Quick Takes: October 11 “Look at this cool stuff” edition

Linking up with Jen at Conversion Diary. In the interest of sparing you my complaining, here are seven cool things that are totally non-important.

1. DIY tumblr, which I have never seen before today when a page I “like” on Facebook made a link. The lady made a giant squid pillow! I could totally do that.

2. This Russian guy does amazing makeup/beauty work. Most of the models don’t even look like themselves anymore.

3. I’m really excited about this.

4. One of the days I was sitting with Agnes at the hospital during her last stay, I watched PBS on a Sunday afternoon. I watched Joanne Weir Cooking Confidence and she made this soup, Butternut Squash with Carrot Soup. I have made it two times at home in the intervening weeks, and I give it high marks. It is very delicious and not complicated, though it does take a long time start-to-finish. The time is mostly waiting for things to cook, but you do have to plan ahead. It is worth the time, and Stephen likes the soup too!

5. Speaking of soup, I am discovering that I love this option for dinner. I have made several kinds of soup in the past few weeks, and I like that it is fairly difficult to do something catastrophic. I made the squash soup, and a soup with chicken and barley, and a cheesy potato soup with broccoli. I followed recipes for all, but I made some adaptations and they still tasted great. How easy is soup, with crackers and cheese, or bread, or a toasted sandwich?

6. Apparently I’m obsessed with the Dragonriders of Pern books by Anne McCaffery. I read them when I was in high school and I come back to them time and again. I have recently read all of them again except the few that I reread not too long ago already. It is a fascinating world with many compelling characters. There are a couple things I find especially interesting, but I guess not interesting enough to talk about them in detail: 1) there is no religion on Pern and no apparent belief in a Higher Power. 2) there are very few cases of cancers, mental or physical disability, or other genetically inherited conditions. 3) the society is culturally liberal from a sociologic standpoint (no stigma for homosexuality or infidelity), yet “drudges” abound in every dwelling. They do menial, dirty work and are often people with more limited intelligence and aptitude. There is also a very strong caste system, though it is possible to move among the classes.

7. I like this song on the radio right now.

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7 Quick Takes: September 27

As usual, linking up with Jen Fulwiler at Conversion Diary.

1. I apologize for having an exceptionally quiet week around here at the blog, but seriously, if I had tried to write posts they would have looked like this:

or this:

2. Boo hoo. Did someone say Terrible Twos, because that’s exactly what I’ve got. “Time to eat lunch.” Tantrum. “Time to go upstairs.” Tantrum. “Time to go to bed.” Hoo boy. Biggest tantrum ever. Last night was definitely not my finest hour when it was time for Stephen to go to bed. I lost my temper and I’m ashamed. And scared of what will happen tonight. Can he just magically already be in bed without me having to put him there?

3. Speaking of Stephen, he’s currently obsessed with this movie.

It’s pretty cute, beautifully animated, and about penguins which seems to be the main draw for my kid. He loves penguins, for some reason. I haven’t pushed that animal on him, but he does have one story book about penguins and as far as know that is the root of his penguin exposure. Now he loves them, and he requests this film by asking, “watch penguins? dee bee dee bee dee penguins?”

4. A physical therapist came to see Agnes today to get her signed up for in-home physical therapy. She seemed pleased about Agnes’ development so far, telling us that Agnes is pretty much in line with where she should be for a 3 month old baby. That was thrilling for us given all the talk about developmental delays and physical limitations. We aren’t expecting that Agnes will grow up to be normal, but we are happy to hear that she is not currently far behind. Hopefully she will be able to continue exceeding expectations! The therapist also said that Agnes demonstrates great alertness and eye contact. We told her how Agnes seems to anticipate negative experiences like car rides, diaper changes, and suctioning, and the therapist said that is really wonderful evidence of advanced cognitive skill. She said young babies can’t usually anticipate. So, we’ll take that news at face value and not put any additional weight behind it, but we are very happy to have heard this news.

5. I’m planning to dress Stephen as a penguin for Halloween. I think it will be cute! I think he will love it! I haven’t decided for Agnes yet, because she is most likely not going trick-or-treat. I was thinking an alien, but no would see the costume except us. And everyone on the internet who looks at the inevitable picture.

6. Tonight for dinner I followed a recipe and made Tilapia Curry with Basil. I realized as I was putting the dish in the oven that I forgot to add the curry paste. Fail. I guess I actually made Garlicky Tilapia with Basil. Because that’s about all you can taste. It actually tasted okay, but it would have been better with curry paste.

7. I did manage to get Stephen to eat his dinner. He did not want to when I set the food on the table (“no. no. no.”) but I ignored his objections and ignored him. I ate my dinner and eventually he came over and sat down. I had to leave to attend to Agnes’ demands, and while I was gone, Stephen ate up his plate. Win one for mommy. Hopefully I can manage bath time with as much grace.

For some quick takes that are not about whiny toddlers or whiny mommies, go see Jen.

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