Blessings and Mercies

Jordan’s symptoms have drastically reduced and we all slept well last night.
My mom was available and able to come and spell me yesterday.
Jordan was totally calm midday and I was able to nap.
My friend Julie was both available and willing to take the girls all day long yesterday.
I shared the vulnerable and painful times here and on facebook and received encouragement and affirmation and been prayed for.

Blast from the past – Photos from 2014 cuties


Filed under Everyday Stuff

Year of Medicals

I need to list out all the stuff that I’m managing right now. Two reasons: for myself and to tell my parents, who care.

Trying for a family photo when the family came over for my Dad’s 60th birthday last week.

Anna: For privacy sake, I won’t share her mild things here. But on a parenting front, she is social and fashionable and working through the many moral and social and physical developments of an almost 11 year old. She is 10 going on 20 and is navigating the mood swings and “blahs” of a preteen with as much grace as possible.

Jordan: Jordan has been struggling more than ever. We started treating something called PANDAS or PANS, which I don’t understand well yet. I need to continue reading and researching. It’s more challenging and also more important than college. I’m trading emails with the psychiatrist coordinating his care, making trips to the pharmacy, getting blood draws done, administering meds…. but mostly sitting with a frequently distraught child who is self harming and in crisis. It’s exhausting. He’s taking an anti-viral called Amantadine, which is supposedly acting as an anti-inflammatory for his brain. He’s just started on a 30-day course of Amoxicillin, which will hopefully, but not for sure, cause the PANDAS flare to go down so he can feel better. Some of the potential treatment involves extended IV treatment that is often not covered by insurance. That concerns me…. one, because Jordan is likely to yank an IV out, two, because the bill is often around $15K. Surely it is cheaper in a non-USA country. Our medical system’s flaws are centered around $$.

Margaret: Maggie has always had a sensitive stomach, had severe food pickiness, and been small for her age. I took her into the pediatrician again yesterday to try and do a little more digging into how to help her be able to eat more of what she wants when she wants. I brought a list of potential root or umbrella diagnoses in to discuss and between a smart pediatrician and Maggie’s descriptions of what she experiences, we have a few things to try. For probable reflux/heartburn, we’re going to try antacids to see if that helps. If it does, we’ll discuss root causes and long term treatment. For possible H. Pylori overgrowth, we’re doing stool testing. For possible IBS (Irritable Bowel Syndrome), we’re going to get some probiotics. If we don’t find relief with any of these, we’ll go to a GI doctor and scope/biopsy her upper GI areas to look for EOE, ulcers, or…. something else. I’ll have to find my notes. On a personal/parenting note, Maggie expressed frustration with her interpersonal relationships outside of the family and struggled with fears and depression, so we have been seeing a counselor together for a couple months and that has been a really positive input to her and us. She is so incredibly bright and articulate and with a great counselor, we’ve identified and corrected some thought patterns. She’s doing really well in that department now, but I still want to schedule some more appointments to keep the momentum going.

Carolyn: Carolyn is doing really well right now. She’s 5 and learning about normal things kids learn at that age – like effective sneaking and hiding cookies under her blankets. (laughs) She is in danger of being a “glass child” – a child that is not seen, because everything is going well for them. However, with her ability to talk over just about anyone or anything, I am pretty confident that she will remain in view. She loves, LOVES to snuggle and she and Maggie play in extended and elaborate make-believe worlds.

Daniel: Daniel is very stable right now. His health is good, his weight is up, and he is learning language at an incredible pace. He is a bit slower to catch onto those more challenging things, like patience and waiting, melting down rapidly when he thinks his needs will not be met. But that is all as expected. His therapy evaluation appointments (PT, OT, SLP) to pursue state supplementary insurance are behind us, thankfully, but I don’t have all the documentation yet, so I cannot submit it yet. His PT appointments for determining the wheelchair we want to order are still ongoing, but hopefully we’ll have that order placed soon…. and hopefully it will make it through the gamut of insurance rejections and resubmissions before 6 months is up. We will see. At that point, we’ll pay our 15% coinsurance to the tune of over $1K. We are also wanting to get him a stander and then a gait trainer. But this has proved more complex, as his legs are untreated and his feet crooked. So…. how do we want him standing on those feet? Coordination of care emails are being sent by me to his orthopedist in Philidelphia, where we are on the wait list to be treated in the next 12ish months. This equipment will also have a big bill attached, so we need to do it right… also, insurance will only cover one anyway.

Brian and me: This Friday is the anniversary of Brian’s mom dying unexpectedly last year. It’s also the day that we are going to attempt our first date together since before Daniel got home in October. It’s been a grueling last five months. I have a broken toe and am wearing a boot and unable to exercise much. I bought a membership to the YMCA in town (30 minutes away) and Brian and I have been taking turns going there to exercise… the one thing I was given permission to do is swim, so I’ve gone swimming 3-4 times and it felt great. Brian’s blood pressure is up a bit… hopefully that’s just due to life and not because his kidney condition is approaching critical phase.

I had somebody tell me recently that they have a friend who adopted too many times and took on too much and that it had been unwise and their marriage was struggling.

That hurt. And I don’t even quite have the words to express why.

We are doing our best to follow God’s will for our lives. We knew it was going to be hard. And we knew that these decisions were “on us.” But we had hoped that we wouldn’t feel so alone. Those friends who have continued to reach out, those neighbors who have extended practical support…. they are like jewels to us. My parents don’t live nearby but they’ve made continued efforts to reach out a couple times a month to us. I don’t even know what I’m typing any more. I slept next to Jordan last night (mattress on the floor) listening to the same children’s CD over and over and over, because that’s the one that pulls him from his screaming most likely. He cried off and on (even in his sleep) ALL NIGHT last night. I’m tired.

No homeschool today.


Filed under Everyday Stuff

Winter 2018

Doing schoolwork and posting blog photos this morning. Just a few more subjects left and it’s only 9am. That’s a snow day for you! Kids can’t wait to get ouside!

Daniel loves to go alllllllll over the house.

Carolyn coming into my bedroom one morning while I was sitting at my desk.

Anna at ballet

Barre time

Center work

Papa time in the morning

View from my bed.

I got excited and ordered most of NEXT YEAR’s schoolwork already.

This girl keeps us all laughing. She LOVES this pink, stretchy bag thingy. Sometimes she climbs inside. Sometimes she stuffs half the household items inside and drags it around.

Sweetly sleeping…. he does nap some days!

Physical therapy evaluation…. discovered this and I wish I could have captured his glee. He called it a “bath” and splashed and played with remarkable enthusiasm for almost an hour!

My dancer:

Daniel and Papa on a weekend morning:

Leave a Comment

Filed under Everyday Stuff

Thoughts from Rachel

Here I am with lots of random thoughts.

When disability gets to me and a soapbox rant
What my kids ages are

So I have a few things on my mind. One has to do with a failed outing the other day as it relates to disability. You see, I decided to pack up the kids and go to the local YMCA to tour it. I prepared a snack and a meal for each of the boys, changed their diapers, took Jordan to the bathroom, had the girls go to the bathroom and find their shoes, dressed the boys in something besides pajamas, had the girls grab a snack from the cupboard, planned to buy fast food for the girls’ and my lunch, packed a diaper bag, grabbed a water bottle and…. left.

The YMCA offers 2 hours of free child care each day so parents can exercise and socialize. I figured I could keep Jordan with me, maybe in his wheelchair, since I don’t think Jordan would stay settled for anybody else. (Besides – crying, autism meltdowns, physical aggression, and stripping naked probably are well beyond their ability to handle) I figure Daniel will absorb into a 2-4 year old class alright and Carolyn would be with him.

Then things started falling apart. First, Jordan started crying in the car. A lot crying. Autism meltdown crying and I couldn’t figure out what was wrong. Holding his hand didn’t help. Asking him to be quiet didn’t help. Playing his favorite music didn’t help. He was red in the face, screaming and ramming his head against the window. The girls are stressed by this, but did pretty good. Daniel did not. He kept yelling, “Jordan. Nooo!!” and crying. Any few minutes of Jordan not crying, Daniel was demanding toys that weren’t even in the car and raging (you know a good little toddler stomping, screaming fit) when we didn’t have it. Yeah. The boys were clearly experiencing really high stress. And I couldn’t fix it. And I was trying to drive.

We got there. Jordan continued to melt down even in his stroller. So I guess it wasn’t the car causing the problem.

It’s so emotionally hard to see the child you love in such emotional pain.

Jordan was in the wheelchair and Daniel was in my front carrier, sitting sideways in my oversized ergo. The girls took turns pushing Jordan with me and we trooped in, for better or worse. Daniel started fussing and asking for things he couldn’t have and Jordan eventually melted down. I fed Jordan lunch on the floor in the hall while the director told me that it’s against policy to go to exercise classes with children with you and she didn’t know if an exception could be made for us. We cut the tour short and I dug into my backup-feeding-tube-supplies and fed Daniel lunch while a wide-eyed employee handed me the YMCA booklet.

Y’all. I have practiced acceptance of limitations for years. I’ve been Jordan’s mommy for over six years. But this one kicked my butt for some reason. Maybe it’s because it’s new for me to not be able to take my kids somewhere on my own. Maybe it’s because I had gotten my hopes up too high for something that I knew ahead of time was outside our family’s natural sphere. But this I know: It is okay for me to grieve. It is okay for me to be sad about the things I have lost along with what my sons have lost. I don’t have to be a superhuman and just be rainbows and unicorns about everything. Because some things in life hurt.

The rest of that day were a deep, painful depression. The next day was fatigue and recovery. And as time goes on, I’m getting back to happy.

Happy’s a funny thing. Because life is full of suffering as well as pleasure. I don’t resent suffering, nor do I pursue pleasure to the exclusion of everything else.

I listened to a program on NPR some months ago, where a family was being interviewed. The family had three children, including a child with mild autism and a son more severely affected by autism. One of the peculiarities of this family is that they cannot close the bathroom door when the go to the bathroom or the brother freaks out. The man doing the interview kept angling his questions towards drawing out negative feelings and negative attitudes about living together with an autistic person. I could just slap the guy! NPR likes to put a lot of value on humanitarian ideals. I appreciate that. So since when does your brother experiencing a disability become something we should complain about? Aren’t all people intrinsically individual? Isn’t it our deep desire to be loved and accepted just as we are? How would we want to be thought of if we were the one “born that way?”

A better goal than the pursuit of happiness is the pursuit of loving others as we love ourselves. That means we need to love and care for ourselves. And it means being willing to be together with our fellow humans in their suffering/weirdness/peculiarities/struggles/aspirations/success. It’s that empathy thing.

Okay – that’s all the soapbox for today.

I realized that I am running a home with a preteen, an 8-year-old, a 5-year-old, a toddler with trust issues, and an infant. Jordan is really like an infant right now… his emotions are unpredictable and there is crying for no reason and I have to drop things and go sit with him at any given time. Daniel has crises of identity on regular intervals and I have to drop everything and go sit with him for a bit. I give myself permission to consider myself awesome.

1 Comment

Filed under Everyday Stuff

For this Child I have Prayed

Two years ago, my heart loved this girl as her mother. Because of her, Daniel is my son. I recently learned that she was never adopted and my heart hurts. Will you pray for her and share this post in hopes her family sees her?

When I think of “orphans,” I think of her.

She didn’t ask to be left in an orphanage, but there she is. There she exists. She was born just two months before Daniel was, almost to the day. And Daniel is home and she was left behind.

And so I will share about her with great longing that she becomes part of a family. If it makes a difference, we will financially support her adoption process, though we are still recovering from Daniel’s adoption expenses. She is THAT valuable. What greater investment is there, than to invest in the life of a child?

I can guarantee you that she is not remotely meeting her potential or experiencing life as a little girl should.

Let me introduce to you, a gem of great price… “Kimmy.”

Two years ago, at age 3, she weighed just under 15 pounds and was 31″ tall…. the weight of an average 5-month-old and the height of a 16 month old. I have asked after her growth since, but do not know yet.

She has been diagnosed with cerebral palsy. She clearly interacts with people when they make the attempt to interact with her and when she smiles, my heart swells. She also sits staring, in her own silent world a fair amount of the video. Poor baby.

I cannot name her location or share her name in a public location. But you can know that she is in a country dear to my heart and that she was born in 2013.

I do not intend to mislead you. Adoption is not an easy process, nor is parenting a child long neglected. But there is beauty in love.

Please share my beautiful love, Kimmy, and pray for her to find a family!

Total adoption cost with one person traveling from the west coast is about $25K.
MSRP on a new Ford F250 is about $33K.

I’d rather take out a loan to redeem a life than to drive a fancy new car.

Adoption details:
There is a tax credit that will get you up to $13K back if you have loans to pay off. (We traveled with 3 people each trip and the cost was about $31K.)
The entire process will likely take 10-15 months.
There are two trips required, one for about a week and one for 1-2 weeks.
Only one parent need travel and there are very few limitations to adopting from this country.
Minimum USCIS income is required (125% of US poverty level).

Please feel free to email me with more questions at

Leave a Comment

Filed under Everyday Stuff