Laughing, Weeping, Living

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

“No I’m Not Like a Hobbit”

Earlier this week: (L to R) Me, Jeremy, Jeremy's brother David, Stephen.

Earlier this week: (L to R) Me, Jeremy, Jeremy’s brother David, Stephen.

My precious little boy, Stephen, is really bringing it lately in the verbal department. His thoughts are complex. His pronunciation is good. His vocabulary is impressive.

Tonight I made Stephen a grilled cheese sandwich to eat at 5pm because I knew we would order a pizza later and avoiding toddler meltdown is my primary goal in life. So, Stephen ate a sandwich at 5pm. He also ate some pizza at 7pm when the adults sat down for dinner. My mom remarked, “Stephen, this is your second dinner. You’re like a hobbit!” Stephen became visibly upset and choked out in his crying/whining voice, “No, I’m not like a hobbit; I just had a sandwich!” The rest of us did what we could to refrain from very visibly laughing while I reassured Stephen that being like a hobbit was not a bad thing–no. That it was actually kind of a cute thing for grandma to say…

I don’t think he was convinced.

He has demonstrated some other impressive feats. Little dude can count to twenty. “1, 2, 3, …., 10, 11, 12, 13, 16, 11-teen, 19, 20.”

He can compare concepts such as big vs. little. “I’ll give you a little piece of pizza,” I might say (hypothetically). “Stephen can have big piece of pizza,” he may (hypothetically) counter.

He knows all the colors. He doesn’t understand the concept of favorite yet, though.

Stephen can hold a conversation. “Stephen,” I say. “Will you help eat the purple sauerkraut when it is ready?” He replies, “No [wimper]. I’m not eating sauerkraut…[wimper wimper].”

I say, “Stephen, it’s time to come upstairs and take a bath.” He replies (again, this is a hypothetical situation), “No! I’m not going upstairs [sob] I’m going downstairs in family room! [sob].” Or alternatively, on days like today, “Go to bed. I’m not taking a bath. Get animals and go to bed.”

He does use contractions, and for the most part they are correct. His grammar is really very good; he just struggles with some pronunciation. That is mostly just the cutest thing you ever heard. My favorite is “leaves” becomes “weebs.”

So, I’m done bragging about my genius child.

Water kefir. The "grains" are sitting at the bottom of the jar full of sugar water.

Water kefir. The “grains” are sitting at the bottom of the jar full of sugar water.

The other neat things right now are my fermentation projects. My cousin Karin sent me some water kefir starter and I’ve been working with that. These things are weird, let me just say. Apparently the kefir starter is a colony of yeast and bacteria that you can submerse in a jar of sugar water, the kefir grains (called “grains” because that’s what the look like) eat the sugar, leaving you with a fermented beverage. After the grains have done their thing, you strain them out and ferment the water again with a splash of juice or whatever you want. This second ferment can be an opportunity to build up carbonation, making the stuff taste like soda. My first batch was just okay and flat, my second batch failed for whatever reason, and my third batch looks promising. It is in the second fermentation stage right now. I put some fresh ginger in with the stuff so I’m hoping it turns into something like ginger ale flavored water kefir soda.


My virgin batch of sauerkraut. Red cabbage and carrot shreds.

I also started some fresh sauerkraut yesterday. So far it is looking good! All you need to do sauerkraut at home is some cabbage, salt, a large wide-mouth container, and time. You shred the cabbage and salt it, then use your hands or a handy kitchen utensil to bludgeon the cabbage until it releases moisture. You want to get it as wet as possible. Then you tamp it down in your container and weight it down with some rocks on a plate or a jar full of water. The goal is to press out all the brine so it covers the cabbage. I did end up adding about a cup of extra salt water brine just to get all my shreds submerged. My kraut is already burbling and starting to smell. I guess that’s good! Personally, I don’t even currently like sauerkraut but I know the fresh stuff is pretty close to the best food for healthy digestion because of all the probiotic cultures. I want to add that kind of thing to my diet, and I’m hoping the taste of kraut will grow on me! Honestly, it was one of the easiest kitchen projects I’ve ever done. I hope it works out!

That’s what is going on around here. Thanks for popping in!


7 Quick Takes: October 25

Hi everyone. This week the 7 Quick Takes linkup is being hosted at Clan Donaldson. So I’m joining in at that fun blog.

1. The great city of Cuyahoga Falls, OH–as well as many other cities in the area here–have a scheduled date and time for Trick Or Treat. Cuyahoga Falls is trick or treat-ing tomorrow from 6 to 8pm. I think it’s great there is a specific time and date. That means we don’t have to guess who is going to be ready when and hang out with our bowl of candy from 4pm to who-even-knows pm on Thursday night October 31. When we lived in Billings, there were trick or treaters really early in the afternoon. I remember specifically asking Jeremy, “when does trick or treat start?” and he looked at me like I was from a different planet. I guess I am from a different planet: the planet Northeast Ohio where the cities are kind and smart enough to schedule trick or treat. I know I would rather not take my kid out on a weeknight. Or conversely, show up at someone’s house at 5pm and they don’t even have their candy ready yet. That would be embarrassing!

2. On a similar note, Stephen’s adorable penguin costume is ready! I bought a black hoodie sweater, black sweat pants, some white flannel fabric, and a few sheets of orange craft foam. I sewed a white “tummy” to the front of the sweater, made feet from the foam that will tie around Stephen’s ankles with elastic, and I sewed eyes and a foam beak to the hood of the sweater. The “tummy” is pretty secure; I made sure it was quality stitched so he can wear a cute animal sweater after Halloween. I’m not sure about the eyes staying or not; I might add little ears so his sweater is too cute to even bear. Haha. “Bear.” Get it? Don’t worry, I’ll take pictures!

3. Speaking of Stephen, he has a fun new game to play in the bath. It’s called “monkey pack” and this is how you do it: 1. slap a washcloth on the inside wall of the tub. 2. layer on some foam bath toy monkeys. [optional 2b. count the monkeys]. 3. slap a second washcloth on top of the monkeys. 4. fold up the monkey pack and stuff it in a little bath toy bucket. 5. announce “monkey pack!” 6. Repeat.

4. Agnes is officially coming home on Monday! We are pretty excited. The home nursing agency was not able to coordinate our private duty nurses over the weekend, which is fine and pretty much what I was expecting. Agnes moved up from the PICU and now she is on the floor where all the trach kids go who don’t require intensive care. I will miss the PICU staff! I really like the nurse practitioners down there especially. The staff on the floor is great too, but it is a lot busier and the nurses all have more patients to care for. In the PICU, nurses only ever have two patients, so it’s a difference. Plus, our PICU room was nice and big with large windows. Sigh. At least it’s only for a couple days.

5. I just want to say a bit about the power of prayer. One week ago, Jeremy and I had a big meeting with the PICU doctor, the pulmonologist, some Palliative Care people, and a PICU social worker about Agnes’ long term care, and what the plan was for her treatment. No one could say whether she would depend on a ventilator or not. They had not yet started weaning the vent settings. Two weeks ago, Agnes was completely dependent on a ventilator, she was barely breathing on her own, she required regular doses of sedative because when she was awake, she fought the ventilator and became distressed. We were seriously talking about how we would deal with a baby on a ventilator, and planning our lives around a couple months of hospital time. Three weeks ago, Agnes was close to death. I mean it. They couldn’t give her enough oxygen; they couldn’t sedate her enough; they couldn’t feed her stomach food.

And today she was breathing totally on her own, with exactly the same equipment and oxygen and medicine (except for one med) she had when she was at home last month. She was alert, looking around her room, reacting to me and to Stephen, responding well to occupational therapy, tolerating her bolus feeds, maintaining a decent oxygen saturation.

Of course the doctors and nurses were working hard, but everyone praying for Agnes was working harder! Someone told me today that she honestly didn’t believe Agnes could kick the vent this time. Agnes did kick the vent, with the help of your intercession! Yesterday Jeremy and I prayed our rosary for the intention that Agnes would come home soon. That same afternoon the NP told us she wanted to discharge Agnes today. Prayer works. Miracles are real. Agnes is a miracle and a living example of the power of prayer.

6. Now to totally change the subject, my dad brought home the most enormous head of cabbage I have ever seen. ever. I have been intending to make Ukrainian style cabbage rolls with some of the cabbage, but I keep missing my opportunity. Jeremy offered to make some coleslaw, but there are still 4 more pounds of cabbage to deal with. Does anyone have any good ideas?

7. Stephen has thrown fewer tantrums this week, or at least, I have paid attention to fewer tantrums. I’m also trying something new: I ask him what he wants to eat for dinner/breakfast. So far he hasn’t requested anything objectionable. Yesterday he wanted “cereal” so I asked, “oatmeal or cheerios?” and you can guess what he wanted. This morning he wanted “jelly. peanut butter and jelly.” but he asked for it in a cute toddler voice that I can not transliterate. I am still so thankful he likes eggs again, and we have started giving him a gummy vitamin each day. He always requests “more” vitamin. I’m totally jealous of his vitamins.

Okay, so not very quick takes, but still, I hope interesting takes. Head over to Clan Donaldson for more!

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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.


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.


What I Wore Sunday September 22

Linking up with Fine Linen and Purple, a bit on the late side, but hey the link-up is still live until tomorrow morning so why not slip in just ahead of the deadline?

100_1807Quick run down of the fam’s duds:

Me: dress from a thrift store in Billings, MT. Sweater from Target years ago. Boots are my new Clarks; ain’t they purty?

Stephen: the finest that thrift stores have to offer.

Agnes: sleeper second-hand from Cheering on Charlie. Puppy toy and car seat second-hand from Stephen.

Jeremy: I don’t know, but he always looks super sharp for church.

We got my dad to take a group photo. Agnes is openly crying. Stephen looks angry as all get-out, and Jeremy prodded me in the shoulder and commanded me to smile an instant before my dad snapped the picture. That’s because Liturgy was kind of horribly for us this week. Agnes was mad and she needed suctioning during Liturgy so Jeremy took two trips to get her and all her stuff into the cry room, and he was gone for a long time. While he was gone Stephen decided to make an icky diaper so I had to leave too. The rest of the time Stephen was a pill and kept trying to get us to leave the sanctuary and “go downstairs.” He got whiny and cried a little and refused any sort of distraction. So I have no idea what the readings were about and I couldn’t tell you anything about the priest’s homily. We didn’t stay for coffee afterwards because the last thing I wanted to do was “go downstairs” and reward Stephen’s begging, plus we were worried about Agnes. She didn’t look that great.

Turns out that was because she’s a bit sick. Yep, baby has a minor infection in her trach or airway or something. She is coughing a lot, producing lots of thick white secretions that need suctioned, and she requires more O2. I was convinced she would go back to the hospital since she’s been home for two weeks today and that was her previous record. Well, she’s still at home at least. We’re giving an additional antibiotic and cranking up the O2. Last night we couldn’t turn the O2 high enough for Agnes to wear the mist collar, so we had to put the HME back on, which for some reason, she seems to tolerate better. The mist collar is important, though, because it helps to thin out those thick secretions that can clog up the trach if you don’t keep up with suctioning! We did actually change her trach tube this morning to see if that would help, and it did. She still is struggling with the oxygen, and she is working to breathe a little more, and being little miss cranky-pants. But the pediatrician didn’t see anything urgently concerning yesterday when we took Agnes in, so hopefully this is something that Agnes can recover from at home.

The past few days have been really bad for me. I am soclose to the end of my rope, and I feel really overwhelmed. Jeremy has been working every night and my dad was away on a business trip, so the troops have been thin around here. Not to mention our nurse didn’t come on Sunday night so we took turns covering the time. It’s good for you, my dear readers, that I did not have time to write any blog posts. You don’t need an earful of my fatalistic depressive crazy rants. Hopefully things start looking brighter in the next couple days. Because my weariness is interfering with my ability to care for my children.


Treasure Every Moment

Today we had to eat lunch and we served spaghetti with meatballs, and a glass of milk, and this was just totally unacceptable to Stephen. I think the underlying issue was that he wanted to keep watching “Yo Gabba Gabba” videos, but he came upstairs willingly enough when I told him it was time for lunch. Anyway, when we tried to sit him down to eat, he pitched a fit to end all fits. Jeremy and I ate our delicious lunch while Stephen rolled and screamed and cried on the floor, and we got to talking about how this was probably one of those moments we are supposed to cherish. “Cherish each moment; they grow up so fast.” Yadda yadda. Then I decided I should take a picture of Stephen throwing a tantrum so I could post it online and be like, “treasure every moment, ha ha. Even this one? ha ha.” So I got out the camera and Stephen was like:

I noticed you were trying to capture an action shot.

I noticed you were trying to capture an action shot.

Then I told him to lay down on the floor and cry some more because I was trying to put together a really good, snarky type of blog post. So then he was like:

Actually, I think this is funny.

Actually, I think this is funny.

At this point I realized that the take-a-picture thing might actually be able to snap him out of his fit, so I was like:

Now mommy wants to take a picture of you eating. Come sit on your chair.

Now mommy wants to take a picture of you eating. Come sit on your chair.

So he did. And he ate.

Isn't it fun to eat your lunch?

Isn’t it fun to eat your lunch?

Then we tried another one:

Now mommy wants to take a picture of you drinking your milk like a big boy.

Now mommy wants to take a picture of you drinking your milk like a big boy.

And all this time, Agnes was over in her crib, not wanting to be left out of the fit-pitching fun:

Waa. It's my three-month birthday and no one is serving me cake! Waa.

Waa. It’s my three-month birthday and no one is serving me cake! Waa.

Happy three-month birthday to Agnes! She is doing well at home and we are all getting used to her being here. The night nursing is going well and Jeremy and I are thinking all our future kids should be trach babies so we can sleep through the night.




What I Wore Sunday: September 8

Linking up with Fine Linen and Purple.

We’ll do this “quick and dirty” as my Ear Training teacher in college used to say. Only she was referring to the sight-singing quizzes, and I’m referring to a blog post. Whatever, apples and oranges.

Stephen and me, in front of the iconostasis at Holy Ghost.

Stephen and me, in front of the iconostasis at Holy Ghost.

Liturgy was fine this morning, except the lady who leads the choir was out sick, so another lady started us on the troparion. But she sings alto so of course she started out with her own part, and all us sopranos were like “…..” so we sang the alto part too because we couldn’t find our way up to the soprano. For me, at first I didn’t realize we were all singing alto because I don’t know the music yet, and when I did realize it, I was stuck in the alto range with the alto notes in my ear and I couldn’t get out. Oh well. Now I know that when Anna leads, I should find my way up to the soprano part ASAP! Today was kind of interesting because in the Eastern Catholic calendar, we celebrate two events today: The Nativity of the Mother of God, and the┬ápre-feast for the Exultation of the Cross which occurs on September 14. I don’t fully understand the pre-feast thing yet, but I’m getting there. Anyway, we sang double stuff today to cover all the feasts. There were even two Epistle readings instead of one! Only one Gospel reading, though.

I finally managed to snag a photo of the interior of Holy Ghost. In the picture you can see the iconostasis, which is the gold screen across the front of the sanctuary. There are icons of major saints on the screen. As you face the screen, Jesus is to the right of the main doors, and Mary is on the left. I believe it is St. Stephen on the little door on the right, and St. Gabriel the Archangel on the little door on the left. The rest of the saints pictured are church fathers such as St. John Chrysostom. Across the top of the screen are scenes from Gospels. The painting on the dome above the sanctuary is an icon of Pentecost, when the Holy Spirit rested as a tongue of flame over each apostle and Mary the BVM. The altar is not in view; it is behind the doors of the screen. The little table directly behind me is called the tetrapod, and it holds an icon for the feast day or liturgical season, and a cross. So there’s a little about Eastern Catholicism for you!

After liturgy we went to the hospital to visit Agnes. My parents were there already, in the midst of their twelve-hours of care. So Jeremy, Stephen, and I just hung out for awhile before coming home. It was at that point that Stephen decided to turn on all his annoying. He did take a brief nap, but he was ornery before, and he was ornery after, and he’s in bed for the night right at this moment and he’s still ornery. I’m choosing to ignore. As soon as I’m done here I plan to grab me an adult beverage and a snacky-snack and chill with some “Storage Wars” or something of that ilk.

I do just want to point out one thing about my church outfit: I’m wearing shoes that are not black Minnetonka Moccasins.

The rest of my gear: Top from Old Navy. Green skirt from an Albuquerque thrift store. Veil I made myself!

Stephen picked out his own duds for church. I was flipping through his (four) nice shirts in his closet and he told me, “red shirt, red shirt.” Then I offered him blue jeans or navy slacks and he chose the navy slacks. Kid’s got style.

Finally before I sign off, the latest on Agnes is she continues to need a bit of oxygen. They did wean her off briefly a couple days ago, but when she gets made, her sats drop and she needs a bit of an oxygen boost. I don’t know if she will come off of oxygen before we bring her home this week. She needs less than she did at the beginning of the week, so it’s already an improvement from where she was. We’ll see. She will hopefully be coming home Tuesday; if not Tuesday, then certainly by the weekend. We’re just waiting on the home care nursing. Praying it all gets sorted out!

Head over to FLAP for more link-ups.

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This is Really Hard

I’m sure everyone who brings a newborn home can agree that it is not an easy thing to parent an infant, especially if you also have at least one toddler to care for too. Thank God Jeremy is able to be around a lot during the day because otherwise I don’t think it would be possible.

I definitely remember having a lot of trouble when we first brought Stephen home. We didn’t know what we were doing, I had a hard time getting breastfeeding off the ground, we were both exhausted, etc. When we were getting ready to bring Agnes home, we were kind of prepared with what to expect. We even had a plan worked out for covering her nighttime feedings (Jeremy does the late night one, I do the butt-crack of dawn one, we take turns doing the one in the middle of the night). Agnes is even a fairly easy newborn to care for. She sleeps a lot. However, I still find myself on the edge of holding myself together quite often. I’m sure lack of decent sleep is a contributing factor, but there are many things about parenting Agnes that I didn’t realize would be so hard on me.

1. It actually really bothers me when she doesn’t take a lot of milk from a bottle and I have to hang most of it in the tube for a gravity feeding through her n/g tube. I knew this would be happening. Jeremy and I trained for n/g care and tube feedings. I knew Agnes would be weak and tired easily and that she would probably have a transition period coming home. But every time she dribbles milk out of her mouth instead of swallowing, or coughs a little while trying to suck on the bottle, or simply refuses to eat, I flash forward in my mind to Agnes needing a surgically installed g-tube to her stomach and she can’t eat by mouth at all and she will always be like a helpless newborn no matter how old she gets because no one knows how much her development will be delayed and then she will die. It’s kind of rough. I know it’s irrational. It makes me cry.

2. Agnes is the busiest baby on the planet. The first full day home we had six or seven phone calls about Agnes’ follow up appointments, and we spent two full days trying to finish an online form for applying for Social Security Disability benefits for Agnes. Plus it takes almost an hour for her to finish each feeding. Plus we’ve already had two visits from the home care nurse. Plus she’s already been to her pediatrician’s office for a “getting to know Agnes” appointment. We had to start using a new wall calendar so we can keep track of all her stuff. It’s really stressful trying to keep all her stuff organized. When I think about the stacks of paperwork and binders of information we have already, and all the appointments we already have scheduled that we have to remember, it makes me cry.

3. The other thing I didn’t realize would be so hard is Stephen. He is actually doing really well with having Agnes in the house. He doesn’t appear to be jealous of her and he absolutely does not act out at her in any way. Mostly he just comes over to her and points and says, “Baby Agnes. Baby Agnes.” Except it sounds like he is saying “baby ass” but he’s two so we give him a break. Even before we brought Agnes home he had started to pitch more fits, just because he is two and starting to assert his independence. But since we’ve all been home, I guess the stressors building upon each other have made it really difficult for me to handle Whiny Toddler. When I open the fridge to get something or scan the contents in preparation for making a meal, I just can’t handle how Stephen magically materializes and starts whining for “milk! milk! apple juice! apple ju-u-u-uice!” and then he tries to grab the bottle as I close the fridge door and then he’s even more crazed because now his hand got shut in a door. And that’s just one example of his new trick of throwing tantrums in the kitchen. He is being unreasonable. It is because he is two. It makes me cry.

4. Being tired all the time is not something that is unfamiliar to me. I do have another child after all, and I have recently been pregnant, and I have recently been “nursing” a breast pump around the clock, and I have recently been a frequent visitor to the NICU late at night. So I know how to deal. Bigger cup of coffee, please. I think this is another case of the multiple stressors building on each other. When I’m sitting with Agnes as her crack-of-dawn feeding is running down the tube, I feel so sleepy and I start to nod off a little. I think about how I probably won’t get to take a nap, and how it’s my turn to do the mid-night feeding later. I think about how tired I am and how it’s going to be a long time before I can sleep well again and it makes me cry.

God bless Jeremy when he comes in to a room and finds me sobbing over a stupid thing and he says, “You don’t have to be upset; it’s only a [fill in the blank].” I know it’s a stupid thing not worthy of a few tears, but my capacity for dealing with even the tiniest bit of conflict is completely gone. I do try to stay positive as much as I can, and I am pleased with how Agnes is doing, overall. I know things will become easier as we get the routine established and find what our new family “normal” will be. In the meantime, it’s a matter of getting from one minute to the next.

Here is a nice image to end the post on a positive note:

Stephen wanted to hold "Baby ass"

Stephen wanted to hold “Baby ass”

Aren't they so sweet?

Aren’t they so sweet?



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