Laughing, Weeping, Living

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

Baby Alice

Next week we were going to happily announce that a new baby Schwager is on the way. Instead, today I announce with sadness that our new baby Schwager has miscarried. We have named her Alice. She was very, very little when she died, so we decided to endow her with a female name since her actual gender was unknown. Alice is a family name on my father’s side, and I have always thought it was a very pretty name. Perfect for our new little baby saint.

We are very sad to lose yet another child; just to recap our baby survival rate right now is 25 percent. I don’t really want to be that family who is such an example, bearing trials with such grace. I don’t want to need all this grace we get from having three little baby saints in heaven praying for our particular needs and intentions. Why do we have to be purified so thoroughly here on earth? I would be happy to do it in purgatory if it meant I could keep my babies.

Since I have now had two miscarriages, my doctors and I will do some investigation to see if there is something medical that is causing me to lose pregnancies. On the one hand, I hope there is a medical reason, because it might be treatable and then I can have a successful pregnancy with a healthy baby. On the other hand, a medical reason for repeated miscarriages can potentially be serious. I don’t really want to come away from this investigation with a newly diagnosed disease.

So while we continue grieving our children, and investigating medical possibilities, we rely on their prayers.

Baby Joseph Mary, pray for us. Baby Agnes, pray for us. Baby Alice, 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┬áthe 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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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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Sleeping Sideways

As the night nurse says, “she has butter in her drawers!” I don’t even know how she manages to slip sideways like this, but she does quite frequently.

And before you start counseling me about all the blankets and things in Agnes’ bed, I know that’s not generally allowed, but Agnes is constantly monitored by a machine that beeps in a most annoying fashion if her blood-oxygen level dips below 92%. So, no SIDS for my baby girl. Plus, she almost always has someone sitting right in the room with her.

Now, for the cute baby pictures!

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She likes to stick a foot through the bars.

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One little hand pokes out.

Who you lookin' at? I'm not doin' nuffin' wrong.

Who you lookin’ at? I’m not doin’ nuffin’ wrong.

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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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Nose Dispenser

brrrrrrrrrrrrrrrrrrr [that’s a drumroll, btw]

Agnes is coming home tomorrow!

Unless, of course, something goes horribly wrong. But that is not likely. Jeremy and I have fulfilled our caregiver trials, and my parents, too. The home care nursing has been totally lined up for all seven days of the week, and all Agnes’ equipment and supplies are in the house. Supplies that include…nose dispensers. The thing about tracheostomies is, they are essentially an open tube that leads directly into a person’s airway. People with normally functioning airways breathe through the nose and mouth, which serves to humidify and warm the air before it gets to the lungs. People with trachs bypass the nose and mouth, so the air that goes through the trach tube is chilly, dry room air. That is, unless there is an HME on the end of the trach tube. That is a Humidity and Moisture Exchanger, also known as an artificial nose. The HME traps moisture from a person’s own exhalations, then the new air passes through the humidified filter, thus supplying moisture to the new inhalation. It’s a pretty neat invention, and the noses come packaged in a box with a tear-away flap like you see on a box of tissues or on a box of pop cans. The HME’s come packaged in a nose dispenser. Hee. Hee hee.

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100_1766It will be a relief to have Agnes at home, though I confess I feel kind of numb about the news. It’s hard for me to feel strongly about Agnes news anymore, whether the appropriate reaction is excited, angry, sad, or whatever. There is just so much thrown at us, and so quickly, that I’ve become exhausted by extreme emotions. Plus, Agnes’ condition changes literally from hour to hour some days, so there is no point in investing in an emotion. Anyway, I guess what I’m trying to say is I am cautious and reservedly excited about Agnes’ homecoming tomorrow. And, I’ll believe it when I see her in bed at home. And, I’m well aware that it’s not impossible that something will come up to delay her homecoming. And, I’m afraid to feel excited because that will open up a place for me to also feel extremely nervousscaredterrified-paralyzedsaaaaaaaaaagh.

So tonight I will be organizing Agnes’ equipment and gear, and making sure I know where all her stuff is stored, and putting sheets on her bed, and cleaning house a little. Part of my task will be to weed through Agnes’ clothes and pull out the suits that are now too small, and the suits with zippers. Since I need access to Agnes’ g-tube every three hours, zippers are not practical unless I feel like leaving Agnes half-undressed for each feeding. I do want to give a shout out to Cheering on Charlie. I just got your package today. Thank you again for sending Agnes some snappy baby clothes!

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Recap The Awful Year

Okay, I’m only going to do this once and get it off my chest. But geez louise could something good happen around here? We are due for something positive without even the slightest hint of double-edged swordiness.

Thank you, facebook.

I am going to recap this past year, and I’ll be totally honest with all y’all, it’s going to be a bit of a pity party. I know the people who are in my life already know the extent to which this year has totally sucked ass monkeys, but I’m hoping this exercise will be cathartic and help me to move forward.

May 2012: Our “year” started more than a year ago. We found out we were expecting a baby! A week after that news, we found out Jeremy’s job was being eliminated and we would have to leave Billings, MT. At least his boss gave him plenty of head’s up.

June 2012: Our baby miscarried. We named him Joseph Mary. The worst part was we had just made the Big Announcement that we were expecting so we had to be all like “just kidding.” It was bad.

July 2012: Despite numerous resumes sent all over the nation, no job offers yet. Around this time I started a good habit of walking approximately 2 miles every morning around the scenic neighborhoods of Billings, with Stephen tagging along in the stroller. That was nice.

August 2012: We sold our better car to help finance our upcoming move to a Place that was Yet to be Revealed to us.

September 2012: We put our perfect house on the market and moved away from Billings to Rio Rancho, NM for the sole reason that Rio Rancho was the only place to offer Jeremy a job. I wouldn’t recommend that strategy to anyone. Also in September we found out we were expecting a baby! Because of this, it becomes impossible for me to secure health insurance in New Mexico because insurance companies will not accept new clients with a “preexisting condition.” Such as pregnancy. We resorted to Medicaid and thank God we did. It was one of the better choices we made this past year.

October 2012: Our house wasn’t sold yet, so we were paying a mortgage payment plus rent on an apartment that turned out being more expensive than we had thought it would be. We made some great friends through our church, and that was really nice.

November 2012: Jeremy stoped receiving new assignments in the mail from Magnificat. It was clear that after 5 years as a solid employee, they were terminating his contract without offering any notice or reason. He supposed it must be related to internal company politics. At least they continued to send complimentary subscriptions to our home.

December 2012: We discover that for some reason, it is not possible for us to run the heat in our apartment if we also want to take a hot shower. We may have started noticing this in November, but now it’s really starting to get old. Also in December, we get a solid offer on our house in Billings! Things keep getting slowed down for one reason or another so we don’t actually close the sale.

January 2013: We sold the house in Billings! Whew, now it will slip onto 2013 tax year filings which is actually extremely fortunate. Also in January, Jeremy has a meeting with his boss during which his boss pretty much tells him he is doing a horrible job at work. Without offering any positive feedback or ways Jeremy can improve his performance. I think the complaint boiled down to Jeremy wasn’t kicking enough kids out of the church religious education program. Or something. Sorry folks, it’s the truth. Around this time we realize that we are deeply unhappy and we start seriously considering moving away from New Mexico, but we resolve to give it at least a full year before we decide. Also in January, Jeremy and I join a class at church that will walk us through the process to renew our consecration to Mary.

February 2013: We find out there is Something Wrong with our baby. The perinatologist outlines some stark possibilities and recommends for us to move before baby is born if moving is what we want to do. We reconsecrate our family to Mary. “To Jesus, through Mary!” We need all the graces we can get.

March 2013: Every time we go for a prenatal appointment there is more hard news. We also get all our papers together for filing taxes. At least we don’t have to file a house sale. We also decide definitively to move. Jeremy gives 30 days notice at work and his boss tells him to clear out immediately. I’m paraphrasing. Jeremy’s car needs an expensive repair to make it road trip worthy. We have to sell our piano because we can’t afford to move it again.

April 2013: Taxes are a bitch and a half. We have to break our lease contract to move out now, so we also get hit hard by the management company. They don’t consider losing your job and a medical hardship grounds for waiving fees. At least they agree to let us pay over 4 months and they don’t charge interest. Moving cleans out our bank account. Goodbye savings. Goodbye house sale profits. Goodbye all the generous gifts our amazing family and friends bestowed upon us. Thank God for our amazing family and friends who helped us in our need. We road tripped to Ohio and that was really nice.

May 2013: We moved in with my parents thanks to their generosity. Lots of prenatal appointments for Agnes, with bad news becoming the norm. U-haul over charges for our “u-boxes,” you know, like we can afford extra expenses. We place both our student loans in forbearance and I transfer the last $20 from savings into checking so our check to Costco doesn’t bounce. Thank God I did it in time. At least it wasn’t too difficult to get set up on Ohio Medicaid and they even gave us food assistance. Without those government programs, we would be done for. I don’t care what you think about “hand outs” but I am extremely grateful for those programs. I’m sorry I’m stealing your hard-earned paychecks. Also in May, Jeremy picks up a part time gig as a pizza delivery driver.

June 2013: Still paying off the apartment management company in Rio Rancho. Still banking frequent-visitor points at the hospital. Still trying to find things that are boxed up from the move. More bad news about Agnes. Whatevs, bring it. Agnes is born! Let the fun begin. We practically live at the hospital as Agnes endures surgeries and the complicated recovery. She is “chromosomally enhanced.” I like to think about it that way. I miss Stephen because I don’t get to spend much quality time with him right after Agnes’ birth.

July 2013: I’ve talked about all this stuff in depth elsewhere on the blog. We’re also still paying the Rio Rancho apartment managers $320.12 a month for 4 months. At least Agnes’ care is covered under Medicaid. Thank God for Medicaid. Agnes does start improving which is really nice. It must be because of all the wonderful prayers everyone sends up for her!

August 2013: Our year is still rolling. At least this month was our last payment to the Rio Rancho apartment. Now maybe we can start saving again. Jeremy’s car is broken again–the same thing that was supposedly fixed in March. Agnes just gets more and more complicated. Now she is getting a tracheostomy and a g-tube. The trach is going to necessitate around-the-clock vigilance which means a home health care professional will be spending the night here every night. For some reason, that upsets me more than the trach part. Jeremy has decided to go to nursing school himself, an idea that was maybe kicking around for a little while but finally decided when Agnes was in the NICU and we witnessed those nurses up-close.

I don’t know what the year will bring, but I’m hoping things will turn around. I’m also going to take real actions to make myself feel HAPPY again. Seriously, it’s been since May 2012 when I would say, “yes, I am generally a happy person and I like my life.” I’m going to join a gym, start following a household budget that includes savings again, try to make better eating choices, and join the church choir. Hopefully when I look back at this post in 3 or 4 months, I will wonder why I sounded so down.

Okay. I’m done. I got the complaining out of the way, now I’m going to go be positive. I’m positive. I’m positive.

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Baby’s First Bath Time Photo Shoot

It’s really hard to give Agnes a bath. I remember Stephen being hard too, maybe requiring four hands at first when we were inexperienced. He really hated baths at first, and he would flail his arms around and cry and cry. Agnes is difficult for a different reason. She is so floppy and doesn’t resist enough with her legs and arms when she is in the tub. We are still using that tiny pink tub they gave us from the hospital which is useful because if forces Agnes’ butt to stop sliding away from me when I’m trying to wash her head and torso. She is really slippery! She doesn’t fight much during the bath, and she doesn’t cry; she just looks around with a shocked expression and flops and slides all over the tub. I almost want to hook her arms over the edges of the tub to keep her from sliding around so much. I wonder if she would tolerate that?

I managed to get a few decent photos after the bath.

See her pretty eyes?

See her pretty eyes?

She's staring, bewildered, at the overhead lamp.

She’s staring, bewildered, at the overhead lamp.

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Now to hide some news down at the bottom of post, we had a follow-up with the neurosurgeon today. He is monitoring Agnes’ enlarged ventricles to see if/when they start to grow at an alarming rate. Well, I guess things in Agnes’ head are starting to show signs of pressure. Her head circumference has made a little jump, and so have the ventricles. She has another follow-up in a month to see what’s going on, but if the ventricles keep swelling, she will need a shunt. This is not surprising to me but of course I hope she doesn’t end up needing a shunt! She has defied expectations before, but my personal feeling is, she will need a shunt at some point. I learned that shunts are a more or less permanent installation totally inside the body. The shunt drains fluid from the brain into the “belly” which I forgot to ask if that means her stomach, her intestines, or just into tissue that is not an organ. She would need periodic check-ups to make sure the shunt continues to operate normally, but it sounds like a one-time surgery unless the shunt fails for some reason. The neurosurgeon did say that some babies who need shunts do outgrow the need, but that’s mostly premature babies. I think because Agnes’ ventriculomegaly is part of her special chromosomes, she will probably need to keep her shunt should she end up getting one. Only time will tell if she will need it.

Also in other news that is more positive, Jeremy and I did the same blood test as Agnes to determine if other children we may have will be at an increased risk for abnormal genetics. The results say: No! Agnes’ dealio was a totally random occurrence, and any future children we may have will not bear an elevated risk of Something Strange.

So…I’ve been thinking–and this clinches it for me–Agnes must have a really important reason for being here and for being the way she is. Her God-given mission must be super important. I don’t know if she has already done it, or if she’s waiting to impress us, but I plan to watch out for something amazing!

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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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