Category Archives: Daniel

What I Wore On Sunday: June 30, 2013

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What I Wore On Sunday

I actually made it to church today. *waits for applause*

But Jen, you’re the pastor’s wife.

Yes, I’m the pastor’s wife but I have a sick kid, have my own health issues and have been gone at least 2 weekends this month.

So anyway…

I woke up with enough time to have some personal devotional time before going and getting the little blond boy up and having a tickle fight with him before getting dressed. We made it to church with a little bit of time to spare and one of my church women did the most gracious and wonderful thing ever: she offered to take Daniel outside during the service if he got grumpy so I could focus on worship. I felt really bad turning her down but it was about 85F outside around the time church started at 9:30 and is going to hit at least 104F before the day is through — I didn’t feel like I could ask her to do that if it was going to be that hot. The little monster and I lasted until after the sermon hymn before he hit the point of no return with his grumpiness so we headed back to the parsonage, grabbed my purse, and went out to take care of a couple errands before the day got too hot. (It was 90F by that point.) When Jon got home, he communed me. (The deal we have is that if I’m not present at the altar rail to receive, he brings the Eucharist to me at home.)

So… onto the pictures!

Do you know how heavy that laundry basket is???

I hate just posing by myself and Edda (my beautiful house panther) was off skulking somewhere so I decided to hoist the bear child in a laundry basket. If I look a little grim, consider that Daniel is almost 35 lbs so that laundry basket was heavy!!!

I've got 33.4 lbs of boy in there!!!

My clothes
Shirt: Kohl’s.
Skirt: Kohl’s.
Flip flops: Old Navy.

The skirt is one that I got a year ago and forgot about. The nice thing is that I’ve lost some weight so I can actually pull it up over my hips without unzipping it. I love the length because it works for chasing Daniel and taking him around the block during worship on days when the temperature doesn’t approach the surface of the sun.

It's a good thing he's cute because he's breaking my arms!!!!

The bear child’s clothes
Shirt: True Fan. Go Giants!
Shorts: Circo.

Go check out the better dressed people in the link-up!

The Strength to Carry On

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For those not familiar with what’s been happening lately, Daniel underwent a sedated ABR on Thursday that showed mild hearing loss. This is not a surprise and while it seems like horrible news, it’s actually a blessing to find this out. Daniel is like a jigsaw puzzle of sorts and this is a puzzle piece that we’ve received as to why he hasn’t developed language yet. The next step is hearing aids and the fabulous audiologist is working on getting that in motion.

I truthfully exist in a state with a stress level of 7 or 8 being calm and normal. My FNP jokes that if I come in and my stress level is that low, things are going well because it’s routinely an 11 out of 10. I don’t whine a lot on this blog about how hard it is to be Daniel’s mom because so many other people deal with harder things regarding their kids and do it so gracefully. I will say though: it is incredibly hard some days to be the mom of an autistic kid with so many health problems and I don’t know how I do it, save for the grace of God who gives me the strength I need to persevere.

There are some thank-yous in order however.

Thank you to my wonderful husband Jon who kept the house quiet today and took care of Daniel (even cuddling him this morning while Daniel napped on his lap) so I could spend the day sleeping and trying to get some strength back. It’s been a tough few weeks and I’ve appreciated the chance to recuperate after beating myself to a bloody pulp as I’ve tried to push through.

Thank you to my wonderful mom and dad who hosted us last weekend for the Promise Walk for Preeclampsia, especially my mom who pushed me to finish the three mile walk and watched Daniel so I could take a hot shower and try to avoid my muscles spasming. She also walked Daniel around so I could attend the program portions of the walk. 4 years ago, she caught the first flight she could get to be with me for a week while I tried to heal from my c-section and dealt with the trauma of everything, holding me as I sobbed every time I left the NICU and ripping the neonatalogist a new one after he made me cry.

Thank you to my friend Mary Kathryn of Crochet Chiq who posted a prayer request to Facebook on *my* behalf, asking for prayers for strength for me to continue being the mom I need to be. I don’t think there are enough words to say thank-you for that and it made me cry tears of gratitude.

Thank you to Jeanne, Mandi, and everyone who emailed me to let me know they were praying for us. You give me strength as you reaffirm that I’m not alone and there aren’t enough words to express how much that means to me.

Thank you to my wonderful #Cathsorority sisters who bless me with prayers for myself and for Daniel despite the fact that I’m not Catholic. I appreciate all of you so much and wish I could tell you how much you bless my life.

Thank you to Thomas of Strong Catholic for letting me babble to you on Facebook as I was sitting in the Recovery Area waiting for Daniel to wake up. I appreciate you listening to me when I’m sure I wasn’t making a huge amount of sense.

Thank you to Audrey Bracchi Au.D of UC Davis for working so well with Daniel and I, helping me formulate blog entries to enlighten people as to the findings, for explaining all of this to Jon over the phone, and for taking care of figuring out the next steps so I don’t have to. I really look forward to working with you.

Thank you to everyone at the UCD Children’s Surgery Center for being so awesome and making this process so painless. From Child Life meeting us at the desk to awesome nurses, a wonderful anesthesiology resident, and everyone else, you made my life bearable on Thursday morning, This is why I love working with UCD Health Services — y’all are just so awesome and patient-focused.

There are many other people (like Mrs. H, Daniel’s teacher) who deserve my undying gratitude but I felt the need to give some massive thanks to all the people who have gotten me through the last couple weeks.

7 Quick Takes: An Update on Daniel, Hot Weather, and Interesting Posts This Week

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7 Quick Takes

— 1 —

Update on Daniel. Everything went as well as things could go today. We had to be at UCD Medical Center at 6:15 am and though we were a bit late (the main hospital is a maze), it worked out fine. The Child Life therapists met us at the the desk while we were checking in and took us back. They entertained Daniel while we got him measured and weighed and then while they were taking blood pressure/pulse ox/hooking him up to monitors. He got to pick out two toys to play with and that kept him entertained until the Versed (which he took by syringe with no problem) kicked in. Our anesthesiology resident was lovely (and a former autism therapist before she went to medical school) and our audiologist (who I had met the day before) was great. I had a 2 hour wait while he was in the test and then we got the news that they did find something: mild hearing loss in Daniel. (More later.) They let Daniel sleep the anesthesia off instead of rousing him and while we were waiting, I talked to his nurse about his knitting/crocheting/quilting projects. (The conversation got started because the nurse was telling me about the pillows one of the nurses and her daughter make for all the kids to take home. Daniel’s has Sesame Street characters on it.) Daniel woke up and had some juice while we waited for anesthesiology to clear him to go home. He is now (Thursday night) his normal bearish self. As far as these things go, this was an absolutely painless experience.

— 2 —

So, about that hearing loss… I was suspecting that he wasn’t hearing things totally and this was actually a relief because it means that my suspicions were correct. Yeah, it’s not ideal that he has the mild hearing loss (something that was probably present at birth and missed on his newborn hearing screening) but he qualifies for hearing aids and between insurance, Medi-Cal, and California Childrens’ Services, we can get them paid for. It’s also one more puzzle piece in place for the medical mystery that is Daniel. It isn’t ideal but very little in my life is at the moment and I’ll settle for “we know what’s going on” rather than all of the “we have no freaking clue why this is the case” that I usually get. This will probably also affect his speech therapy because he’ll probably be able to understand the things his teachers and speech therapist are trying to do with him.

— 3 —

The next steps. The next step is an ENT appointment to look at this from a medical perspective and then we’ll meet with her for a hearing aid appointment where they’ll give us a boatload of information and do ear molds (so we can mold the hearing aids to his ears). I also really like this particular audiologist — she’s a warmer person than the other one we’ve had through UCD and she’s got other autistic patients who have hearing aids so it’s not like this is new for her.

— 4 —

All is well again. Wipeout is back this week. All is well with the world. At least they just pre-empted ABC shows for the NBA Finals instead of CBS ones — that would have been just brutal.

— 5 —

Orphans. Do you see these three cherubs?

First row: Brett and Iris.
Second row: Kaia.

BrettIrisKaia

Brett still needs a mama. Iris finally has a family committed to her. Kaia has a family committed to her who will be traveling to her country to meet her on July 26th! Click on their names to see their Reece’s Rainbow pages.

— 6 —

Blog posts of note. This week, I wrote about my experience with the Promise Walk this year, 10 things I live for, and five of my favorite passages of Scripture.

— 7 —

Hot hot hot! It was 97F today and will be 100F or higher for the next 5-6 days. This would be lovely if I didn’t have to be out in it. However, we’ve got the parish picnic tomorrow so I’ve got to deal with at least an hour of it in addition to whatever time I spend out doing errands and at Daniel’s WIC appointment tomorrow. I’m thinking that it would be great if Jon were called to a church in Alaska…

For more Quick Takes, visit Jen at ConversionDiary.Com.

Blogging with a Purpose: 10 Things I Live For

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The topic this week: 10 things I live for.

God. The name of this blog comes from Luther’s Bible study method, the tagline is from The Magician’s Nephew, and the name of this domain comes from a prayer. It should not be a surprise to anyone that I live for God.

Daniel. I’m a proud mama. You don’t cross me when it comes to my bear child. His laugh has the power to make me forget every bad thing in the world and he is an incredible snuggler.

My cats. They’ve been with me since Jon’s internship and my first year of marriage. They are my “fur children” and I get testy with people who don’t get that.

Making good music. I don’t have a lot of opportunities to sing or play piano these days but I love singing with a good community or church choir and playing good classical music on piano. It moves me in ways that defy words.

Spending time with family. For once in Jon’s ministerial career, we’re within 2 hours of my family and I make the most of it, seeing my parents at least monthly if I can and my evil twin maybe every 6 weeks. We try to go down to be with my in-laws as much as possible as well.

Writing. It provides me with a way of sorting out my brain and exercising creativity. Occasionally, it provides some money here and there. Mostly, it just gives me an outlet that I wouldn’t have otherwise.

Helping people to treat life as sacred. I’m not the right personality type to participate in the March for Life, 40 Days for Life, or attend rallies against the death penalty at the state capitol building. (There’s also that whole “lack of time” thing.) I do my part by advocating for orphans.

Helping people find their gifts and use them effectively. My policy as a pastor’s wife is not to take any any leadership position in the church if a parishioner can do it better or has a huge interest in it. It’s why I’m not in charge of the women’s ministries, on church council (not to mention that being a huge conflict of interest), or organizing major events for the church. Luckily, we’re blessed with some seriously talented people and some who come up with the most creative things imaginable.

Preeclampsia awareness. Just finished my 3rd Promise Walk for Preeclampsia on Sunday. They had someone doing trivia there who had never heard of HELLP Syndrome and a lot of the statistics before she put together the cards. (She was the sister-in-law of the organizer.) When she asked my mom the question, I told her that I’d had HELLP Syndrome and her jaw dropped. It was a reminder that we have so much to learn about the causes and we have so many medical professionals to educate about it so that their patients might be safer and keep their babies in longer. (Up to 1/5 of women affected by preeclampsia lose their babies as a result of it.)

Showing grace in all things. It’s probably obvious from recent posts and exchanges online that I still have much work to accomplish in this area of my life but it’s my ultimate aim. Grace is an amazing gift from God and I want to share it with the world.

Now go see Becky and everyone else who is linking up.

The Simple Woman’s Daybook: June 24, 2013

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Simple Woman's Daybook

FOR TODAY June 24, 2013

Outside my window… cloudy. It apparently rained this morning and I’m hoping for more.

I am thinking… about Daniel’s one-on-one ABA therapy which will be starting in 15 minutes.

I am thankful… for a wonderful weekend with my parents, getting to have coffee with my friend (as well as maid-of-honor and Daniel’s godmother) Rebecca, and a wonderful time at the Promise Walk for Preeclampsia yesterday.

In the kitchen… marinating some turkey breast for my dinner tonight.

I am wearing… a blue t-shirt and black sweats.

I am creating… blog posts.

I am going… to enjoy any quiet mornings I have this week.

I am wondering… what time Daniel’s pre-op is on Wednesday — I need to call and find out.

I am reading… Between Heaven and Mirth by Fr. James Martin, S.J. I finished Maphead this past Friday and read Killer Honeymoon by G.A. McKevvett on the drive to and from San Jose.

I am hoping… I don’t have to participate too much in Daniel’s therapy today.

I am looking forward to… seeing what a couple “creative” parishioners come up with for the church picnic on Friday. Last year, they built a fully-functional fountain in our church parking lot out of a recirculating pump, PVC pipe, some Rubbermaid containers, and pool toys. They also transformed our fellowship hall into a four-star restaurant every Valentine’s Day for the last two years.

I am learning various ABA techniques.

Around the house… next question!

I am pondering… too many things. It’s why I blog — to clean out my brain.

A favorite quote for today… “I believe in looking reality straight in the eye and denying it. ” — Garrison Keillor

One of my favorite things… Lipton Pure Leaf Raspberry Tea.

A few plans for the rest of the week: Morning Prayer tomorrow, ABA therapy every afternoon this week, Daniel’s pre-op on Wednesday, Daniel’s sedated ABR on Thursday, WIC appointment on Friday, and church picnic on Friday night.

Hosted by The Simple Woman’s Daybook

Promise Walk 2013: The Good, the Bad, and the Hopeful

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I’m home from the Promise Walk. I want to get all my thoughts down now so I can do something on it during the announcements in church next week so I guess I’ll do my normal method of post-mortem on this event.

The Good
[+] A good weekend with my parents.
[+] Getting to have coffee with Rebecca.
[+] Perfect weather — it was cloudy which meant that the morning was cool.
[+] Excellent speakers. The mission family was one who had lost a baby at 35 weeks. The doctor who came to speak was excellent. He referenced the Downton Abbey episode where Sybil dies of eclampsia and talked about the changes in the last 100 years.
[+] A chance to go walk on the creek trail where we used to walk in high school and where my parents found their Maine Coon cat.
[+] A decent shirt this year.

The Bad
[+] Being woefully out of shape due to being sick for so long.
[+] Blisters from my shoes.
[+] My legs and back are killing me.
[+] Poison oak along the trail.
[+] The kid who crashed his bike into the back of my leg… and didn’t apologize. (His mom did but he didn’t.)

The Hopeful
[+] Raising almost $20,000 which can fund a study on preeclampsia.