Hello!

I love this blog for tracking memories and processing my thoughts and experiences and sharing both struggles and triumphs. It’s a way to be real… both with myself and with friends about adoption and parenting and personal life and growth.

And I haven’t written in awhile, because life has been faster than I can process. And I wanted to write, but I keep getting bogged down by trying to think of how to “catch up.” But that’s not really possible, so I’m just going to dive in.

1. Daniel and I traveled back to Delaware to remove his surgical casts and get fitted for braces.
2. Daniel’s personal and physical growth and health triumphs and struggles
3. Anna and having an almost-teenager
4. Maggie and her interests
5. Jordan’s development and life
6. Carolyn’s six years old!
7. Home… the care and keeping of our property
8. Self care – my health, strength, and goals
9. Marriage and how to make life work with a family as we are now
10. Brian and hiking and on being a good husband

I definitely can’t talk about all that.

Let’s just summarize based on what has impacted me most deeply and by what is appropriate to share. (My girls don’t appreciate me sharing certain details of their lives and I respect that.)

This Delaware trip was really hard. It was short, but hard. Day 1, we traveled… waking at 3:45am and heading to the airport… two airplanes and a drive to the Ronald McDonald House. It’s exhausting. The hospital is half a mile from the Ronald McDonald house and Daniel screams (fairly predictably) in cars, so I walk the distance most of the time with Daniel in a wagon.

Day 2: We walk (ooooooh, east coast humidity is awful!) and get his casts off (yay!!!) and I get to see where his incisions were and what his feet look like now. We walk back and bathe and bathe and bathe those yucky legs and feet until six weeks of nastiness are soaked and scrubbed off and sensitivity is halved from “intense” to “touchy.” Walk back and get braces fitted…. and ajusted…. and changed again… and Daniel takes his first steps with his new feet. The walk back to the RMH was horrible… we were both tired and he was in so much pain he couldn’t move or speak and he avoids telling me where pain is, because he thinks it will make it worse. So dinner was with us both in tears and I took off the tall braces and went back to the little ones. And his foot didn’t stay in the braces properly, but that was okay, because we had another day for adjustments.

Day 3: Walk to hospital at 7am (4am home time) to start process to remake braces. Walk back. Walk to hospital again for a really great physical therapy appointment and doctor appointment where we all admire his feet and are proud of his strength and saw Daniel walk a good LONG distance on his new feet with just his short braces on. Also figured out why the other braces were hurting. Walked back. Walked back to hospital AGAIN to e fitted into new braces – took some time for adjustments and so forth. LIke the new braces much better. Pray they are gonna work out. Walk back again. So tired.

Day 4: Pack up, clean up, clean room (RMH, we do our own room cleaning), make everything fit into suitcases and head to airport. Flight is delayed. Cry. Flight is delayed more. Cry more. Flight is canceled. I’m stuck at the airport from breakfast until dinnertime… going nowhere. Finally get on a flight that will get me halfway home. Land. All flights home are canceled. We sleep in the airport and I cry. I was really quite fragile and struggled more than I was okay with. Does that make sense? This was all intense and my endurance was shot. A flight attendant took pity on us and overbooked a flight so that we could get home before lunch the next day instead of evening the next day. I had no more food and no more diapers for Daniel. People were very kind. But I was still stuck. Made it home. Never want to leave again.

Pictures

I hate the KAFOs. I mean, they make the nerdy part of me thrilled and they are incredibly practical from a functional standpoint. But I don’t like them. I haven’t taken time to analyze or articulate why. But after all that work (and i haven’t paid the bill yet!), we haven’t used them once since coming home. Daniel’s knees don’t hardly bend still, and maybe that’s why it’s worked out. He didn’t take long to gain the strength to hold himself vertically and supported for significant periods of time. His walking speed has gotten faster and more coordinated and more upright. Brian just built him a walker with wheels out of PVC so that he can walk more while we’re at camp next week (lots and lots of asphalt areas), but we felt we had to “hurry and build it before he walks without it.” That’s a pretty incredible feeling. I can’t believe that he’s so close to independent walking!!! Yesterday, he was walking while holding my fingers and he barely leaned on them. I’m stoked.

Daniel has dropped a lot of weight. He went from 30 pounds to 27. He couldn’t eat much during his treatment and after surgery and he apparently needs every calorie we feed him. That’s frustrating for me. He’s mostly back to normal now (what he can eat) but it still fluctuates with stress. Also, he has athletes foot and moisture isseus in his AFOs that I’m learning to manage.
I want to make his back look like this picture from last November….

Right after getting home, Brian packed up and got to spend a couple days enjoying time with my brother and his good friends for a sort of pseudo bachelor’s party weekend. SO GLAD he got to go. But I am physically and emotionally spent. Adrenal fatigue and all that. Brian and i work to take turns having periods of respite, but when we’re BOTH tired, it’s hard. Also – his time off of work is used up except for what we budgeted for two summer holidays, so I can’t call him home when I’m having a day where I struggle to get out of bed and care for the house and kids. Thankfully, things are going pretty well here, but whew, it’s a good thing!

Speaking of taking care of things, we hired my dad’s business to do some work around the property that will make tending sections of our property much less labor intensive. He and Austin did a really fantastic job and it feels GOOD to see some work done. Also, Brian and I have prioritized my personal health needs to the top of the stack and I’ve been digging in the last two weeks, pursuing a better diet and exercise. Intense physical exercise is really good for my mental and emotional health and it’s critically needed for everyday care of my boys as well, who need lots of physical support. Besides that, I’d like to make it to see and play with my grandchildren, and I wasn’t on track to do that. So sugar is mostly cut out of my diet and 3x/week, I’m participating in a bootcamp program at a Crossfit gym. Brian and i miss our evenings together those three days, but it had to be done.

Carrie had a tooth pulled, Anna is cooking a lot, all three girls rode on Grandpa’s truck for the 4th of July parade in Molalla, I’m going to the grocery weekly, Daniel is playing in the dirt a TON, and both Brian and the girls are taking an interest in learning how to backpack. Pediatrician and other appointments (dental, cardiology, nephrology, endocrinology, opthamology, phsychiatric) appointments are scheduled coming up in the next few months… mostly Daniel for those specialists. Brian and the girls went to his grandmother’s funeral. We’ve attended English Country Dances and I’ve been trying to prep for the next school year. My hands have been too swollen (or fat?) for my wedding bands in the evening, so Brian and I designed a ring that we ordered on etsy that I love. It’s symbolic for things he and I have been thinking through.

Faith. Hope Love. All other things will pass away, but those three will remain.
Today, those look like specific things to me.
Faith – Stand fast. I will not let this be taken from me.
Hope – Made whole. One day, all the broken things will be made whole.
Love – Poured out. Every day, I pour out love for my children, my husband, and myself. Every day, I pray God will give me love to pour.