The Last Mile's The Hardest

This girl's tenacity and determination never fail to awe me. She's a champion.

"How's it going with Oona?" I get asked this a lot. The answer is: "it's complicated."

I look back on the last 10 weeks with a mixture of pride and shock - "yeah, we did this!" And, "Oh my gosh, how are still we doing this?"

To be honest, we're having an especially hard week as I write this, which may be the reason I feel like I need to write, which conflicts me because I don't want to just write when things are bad. I don't want to give the impression that it's ALL been bad. There's been a lot of grace. There's been a lot of incredibly powerful, wonderful lessons learned. There's been some empowerment, and a lot of being broken and humbled.

But there is some bad. Lately, Oona's been suffering a lot, and it's hard to join her in that while not being able to do anything to really help. She can't sleep. We're woken up several times a night to screams of mighty frustration as an itch or cramp tortures her. Sometimes a little soothing gets her back to sleep. Other times it's so bad her body is rigid and tense, and she won't relax for hours. There's a constant wondering of "could we be doing something different to make it better?" To give her ibuprofen with her tylenol or not? Are we doing her pillows the best way? Should we give her the bottle she's demanding that she really doesn't need? Do we let her cry for an hour, or get her up so everyone else in the house can sleep? Matt and I are extremely exhausted, and it brings out the worst in us.

When I'm REALLY tired, I start getting irrational. I feel it creeping up on me, the way you start to feel icky when a cold or flu is coming on. I get jealous of people I love. I get bitter about how unfair things seem. I get snappy and impatient when I should be gentle and understanding. I get extremely anxious that everything important around me is going to fall apart, and it will all be my fault. I start irrationally feeling like everyone is counting on me to meet their needs, and I don't have enough of myself left to give to anyone, and all is hopeless.

We've got 18 days left with the cast. We're in the last stretch, yet these next two and a half weeks feel insurmountable to me in this moment. So I'm trying to be really intentional about inviting Jesus into this weakness, even as my sinfulness and anxiety rapidly try to erect walls of self-dependence in an attempt to keep Him out. Funny after all these years, and all that my brain knows about needing Jesus when we're weak - it's when I'm weak that I seem to continually shut Him out. "It's my problem. I can fix it myself if I do a,b and c..." My heart has a hard time trusting and believing that He'll walk beside me, that He is who He says He is.

18 days left, and I'm trying to embrace them with hope and faith in the promises of God, instead of wishing them away.

Christmas Cards With Tiny Prints

After Oona's diagnosis and surgery rocked our sense of normalcy, we have since found a new "normal" - it's a more exhausting, chaotic kind of schedule and we're all still adjusting. Because of this, I thought Christmas photos and cards would be impossible to pull off this holiday season.

We just so happened to luck out with the weather in October - 70F, sunny days for over a week straight in west Michigan at the end of fall is really rare! We rushed the kids to the beach on one of these nice evenings to grab some photos. It was all rushed and kind of chaotic, (hmm, kind of like life right now...) but I really love the pictures we got. I especially love how all the kids wore different shades of purple to match Oona's cast. These photos will always remind me of these crazy, grace-filled days with our kids.

I was thrilled when TinyPrints reached out to me this fall to try some of their fabulous personalized, holiday stationary options. We ordered our cards from them last year, and the quality is just fantastic. They seriously have so many beautiful designs and templates this year that trying to narrow down our choices was a real challenge!

We ended up going with the "Cheerful Holly" die cut snowflake card, in Hazlenut. Look at that gorgeous floral print! *Swoon.* I love it in all three of the colors TinyPrints offers it in! The best part is that it's the perfect ornament size, and is something family and friends can keep for years to come. (I hate throwing photo cards away every year, and love the idea of having the photos on an ornament!)

This year I also wanted to try out the matching envelope liners (an add-on when you purchase your cards,) and personalized postage stamps. These little details are such easy ways to make your Christmas cards look extra special! I think family and friends will get a kick out of seeing the small Freys on a postage stamp this year. ;-)

If you're in need of creative, high quality photo cards and accessories this year, I highly recommend checking out TinyPrints! I can personally vouch for their fantastic customer service, unique designs, and fantastic, quality photo printing! (They're running some great holiday promotional deals right now too - hop on it!)

* Thanks TinyPrints for partnering on today's post! Opinions are my own.*

Water On Fire

We had an incredibly powerful low pressure system roll in last week. It brought a ton of wind, rain, (and a headache for me! Am I the only person who gets storm headaches?) It was a couple of really dark, stormy days in Holland. I saw some pictures of the massive waves on Lake Michigan from friends on Facebook and decided to take a quick trip to the state park last Friday evening with Olive, to try to get some pictures myself.

We picked the perfect time to visit. We caught the most dramatic, amazing sunset I have ever seen since living here (or elsewhere, for that matter!) There was this incredible panorama of storm clouds leaving, and a fiery bright ribbon on the horizon over the lake where the sky was clearing, (it gave the illusion that the lake was on fire, it was that bright,) and in between the two were massive, low hanging orange, pink, red and violet clouds. The wind was incredibly strong still, (and cold!) and sand was pelting our skin. The waves were huge! I had never seen the water so high on the lake. Lake Michigan, man...it has such a personality. One day it can be as still and glossy as a sheet of glass, another day you might see 20 foot waves, and in the winter the whole landscape freezes over into an alien looking place. It's never boring, and it's always beautiful.

Today we take Oona back to the children's hospital for her 6 week cast change! While it's awesome to have reached this half-way point in her Spica cast treatment, it's daunting to have another 6 weeks to go. Praying for an easy procedure and comfort for our Oonie today and the rest of this week as she adjusts to the new cast.

Oona 2.0 (2 Weeks In.)

Hello again, after another long absence! Everyone's just fine, it's just been a long (still ongoing) adjustment and between exhaustion and numerous distractions I've become horrible about updating on any platform besides Instagram! (If you don't follow me already over there, my username is @jacquelinef - I'm a huge fan of Instagram and try to post at least once a day!)

I've been calling Oona "2.0" because in some ways she seems like a totally new kid now, though in the most important, intrinsic ways she's still our same old Oonie.

I've had several people ask me what's been the hardest part of this journey, and without a doubt the worst of it was the anxious waiting period before the surgery. Not knowing what to expect always makes me anticipate the worst, and then I become a nervous, emotional wreck. Olive was also a nervous wreck as we waited for the surgery, having occasional nightmares and emotional breakdowns as she worried about the impending surgery. By the time the surgery date arrived we were more than ready to just get it over with!

Oona's last walk, going across the skybridge to Helen Devos Children's Hospital.

Oona with her lucky mustache, playing before surgery.

Oona's surgery was at the Helen Devos Children's Hospital, in Grand Rapids. We were blown away with the quality care she received there. All the staff, from nurses to anesthesiologists were great with Oona and with explaining every step to Matt and I. They allowed our pastors (all three came!) to sit with us up until she was rolled into the operating room. They had the most fun play room right next to the operating room that Oona could play in while we waited.

The second worst part of this journey was kissing Oona goodbye as she went into surgery. I almost couldn't post this picture because it makes me cry whenever I look at it. I found out for the first time how indescribably awful it is to watch your baby rolled into a room for surgery, knowing you can't go too. I know I'm incredibly lucky and blessed to have had such healthy kids, and that there are so many brave parents who have to go through this numerous times. My heart breaks for them, as well as applauds them for the huge amount of courage it takes!

Compounding my feelings as I watched Oona roll into the O.R. was knowing that when she came out, she'd be in the Spica.

We were told to expect Oona to be in surgery between 3-4 hours. Her surgeon was expecting to have to make three separate incisions and scrape around the ball of her hip and the socket in order to get it back in the right place. He also prepared us for the possibility of having to shave off the top of her femur if re-setting her hip proved extra difficult.

So imagine our shock, when not fully 2 hours into her surgery her doctor came out to the waiting room where we were sitting to tell us that he had been able to easily set her hip with just one small incision to loosen the muscles and ligaments around her hip! He told us it was extremely rare to be able to set a walking toddler's dislocated hip so easily, and that in the last 18 years he's been practicing, he had seen only one other case like Oona's 18 years ago! It felt like a miracle to Matt and I. While Oona would still have to be in the Spica for 3 months, her recovery pain would be extremely minimal and the actual cast would not be quite as extreme as we had been prepared for.

When Oona came out of the anesthesia, she was freaked out and emotional, but as soon as we were able to hold her on our laps she calmed down and eventually was her same old self. Matt and I were a little overwhelmed with how awkward and heavy the Spica was (it added about 8-10 pounds to Oona,) and I did have a moment or two where I felt panicked "how are we going to do this?!" We just kept going back to what we had seen the Lord do for Oona through surgery, and trusted that He would work this out for His good in His time.

Oona in her special, loaner car seat that allows her to ride in the car with her cast. 

Waiting for XRays and CT scan.

The last two weeks with the Spica cast have had their ups and downs. I'll start with the positives:

-Diaper changing, which requires a very different method than normal diapering, (Google "Spica cast diaper changes" for more info,) has gone way smoother than I ever expected. We are lucky that Oona's cast is lined with plastic, which is easy to clean up whenever we have the occasional leak. We have been vigilant (meaning, slightly obsessive) with keeping her changed often and dry. After every change, we spend time blowing everything dry with a hair dryer. Yes, it looks ridiculous! But so far, no odor at all, and Oona has not had any sores or rashes, (thank You, Lord!) 

-Sleep has mostly been better than expected! This was a huge answer to our prayers, as going into the surgery we were already sleep deprived (Oona would wake up at least twice a night) and we were expecting sleep to be worse with the Spica cast. Believe it or not, sleep has overall been a little better with the cast. We've had a few really horrible nights where Oona was having leg spasms, which is normal coming out of surgery with such a big cast, but most nights she sleeps comfortably from 8 to 6:30 with one short nap during the day. The trick here was getting the right pillows in the right positions to keep her cool and comfortable. The first week, we had her on a bean bag which could be molded around her head and hips in a way that she was very supported, but last week we moved her to a wedge pillow under her head and back with two regular pillows supporting her legs. This has kept her cooler and allowed her more room to shift around a bit during the night.

-Matt built Oona an amazing wooden rocking chair with a tray, that has changed our lives! The way Oona's cast is positioned she can not sit up straight in a regular chair, which meant she is either reclined on a bean bag or sat on our knees. Meals were a nightmare, as you can imagine, and Matt and I were sore from supporting her most of the time. The special chair allows her to sit up at her own table top, as well as rock! She spends most of her time in her chair. If you are reading this and have a child going into or already in a Spica cast, I highly recommend looking at Ivy Rose Spica chairs. They are very similar to what Matt built for Oona, and will make this whole experience SO MUCH BETTER. Pinky promise!

-We were able to get Oona in her stroller, with the help and support of a couple of pillows, which has meant we can go out for walks! This cheers her up more than anything else. She loves being outside and when we figured out we could still go on family walks, I took a deep breath and sighed "alright - we can do this thing!"

-While I don't know for sure if this is attributed to the Spica cast treatment, we've noticed Oona's vocabulary has exploded in the last two weeks! She's speaking in simple sentences now, and communicates much more than she ever did before.

While the positives have been numerous and definitely outweigh the negatives, here have been our challenges:

-Boredom. Oona gets bored so easily. She's never cared a whole lot for TV (she has been paying more attention since getting into the cast, but not more than 20 minutes or so at a time.) She's received so many wonderful blocks and legos and small toys, but she gets tired of them quickly. That period of time between 4pm and 8pm is awful as she just wants to do the things she can't and the only consolation is having Matt or I carry her. Which leads me to...

-Time management. I feel like if my attention and time equals 100%, the kids are requiring 120% and I constantly feel like I'm failing one of them (or Matt.) Trying to get dinner on the table, homework done, and keeping Oona content is hopeless battle. There's a lot of evenings where I have to tell myself "ok, we're in survival mode right now, and it's not going to last forever, so pizza delivery isn't going to ruin the children!" ;-)

-Trying not to spoil Oona. I wouldn't care so much about this, except three months is a long time to be in a cast, and I want to keep our standards as normal as possible, for all of our sakes! It's harder on Matt and I than it is on her. Often this looks like walking away from her while she's throwing an epic tantrum. I feel sorry for her limitations, so it makes me feel like crap, but I know my feeling sorry for her is the worst thing for her. She doesn't need that! There's been so many hard lessons during this process! I'm choosing to be thankful for them.

-Physical exhaustion for Matt and I. I don't know why, but even though the kids are sleeping ok (knock on wood,) we always feel so tired. My body is sore from lifting and carrying Oona around (she weights close to 40 pounds right now,) and I can feel the strain in my back, chest and shoulders. Matt is exhausted mentally with work and heavy responsibilt

-Getting out of the house. Yes, we can take Oona out in the car and stroller, but she can't do normal things like sit in a cart at the food store. This means that either Matt or I stay home with her while the other does errands, unless it's the weekend and we can go together. I hate this, because I know Oona loves to get out, but I just can't manage her and the other kids out of the house by myself right now. We also really miss doing things like going to church on Sunday mornings, or the morning women's Bible study I usually attend, but I can't leave Oona in the nursery with her cast. It's another trial that requires me to keep focusing on the big picture - yes, this is a long time, but there is an end in sight. We can make it.

-Marriage. Ha, this one is uncomfortably personal, but Oona's surgery and treatment and all the changes have definitely given our relationship some challenges. Our fuses have been shorter than normal. We don't get any time alone. I am very guilty of feeling bitter at times that his life continues fairly normally with work and outside-the-house activities/responsibilities while I've had to give up pretty much everything to give Oona the round-the-clock care she needs. I hate that I fall into that, but I'm a sinful human who needs a lot of grace.

Sorry to anyone still reading for how lengthy this has become! I guess to sum everything up - it's been a bumpy road, but the Lord has used everything about this process to show us in incredibly personal ways how much He loves us. We are learning so much, and we feel humbled. Oona's going to be ok, and Matt, Olive, Silas and I will be too. I'm thankful that He chose for us to go through this as a family, because I can see His goodness through it all. Thanks for reading!

Well, That Changes Everything

We went into the doctor's appointment without a bit of anxiety or foreboding. Sure, Oona had taken a lot longer than her siblings to learn to walk, and she still struggled a bit with keeping up with the kids due to a little limp, but she was walking - and running and jumping and all the other things 18 month old girls can do.  Her pediatrician told us it might be a "hip issue" and referred us to an orthopedic doctor with Devos Children's Hospital in Grand Rapids. I was born with hip dysplasia, which was easily corrected with 9 months in a harness, so I assumed if Oona had a hip issue, she also would be put in a harness or a brace, or perhaps since she was already so mobile she would just undergo physical therapy...

Therefore, when the doctor brought her x-rays in for us to look at and told us Oona would need immediate hip surgery, including a possible a femoral osteotomy, followed by three months in a full body cast, followed by up to a year in a restrictive brace, well...perhaps you can imagine how Matt and I felt. It was like someone had kicked the air out of us.

I walked around in shocked kind of stupor for a week. How were we going to do this? How was Oona going to get through this? My mind couldn't stop racing ahead, imagining prematurely the awfulness of what surely lies ahead - saying goodbye to my baby as she's rolled back to a 3 hour surgery with strangers, watching her wake up to the shock and horror of not being able to move, watching her deal with post-op pain and drugs, watching her come home and deal with the frustration of being bound to a heavy, fully encompassing cast, and worst of all - watching her grieve not being able to do what she loves best: running, climbing, dancing and jumping. Googling other people's stories about toddlers in Spica casts hasn't helped the dread very much - lots of stories of depressed babies, sleepless nights due to painful muscle spasms, and lots of horror stories about the difficulty of keeping the casts dry and clean due to difficulty of diaper changes with the cast.

I'll be honest - this whole thing, it's a nightmare, and we're still in a weird state of grieving while simultaneously trying to be positive. Three months is a long time, but it will come and go. There's comfort in knowing there's a definite start and end to the treatment, if that makes any sense. We can plan around it, and make adjustments for it. And we're so thankful that the dysplasia was caught NOW and not when she was older and at higher risk of needing more surgeries and intervention. I'm thankful that when Oona is ready for school, she'll be able to run and jump with her friends without a limp. I'm thankful that she's healthy and strong and feisty. I don't know how we're going to do the next three months but I know we will do it, and it will all work out for the best.