This post is kinda raw. It’s where I’m at.

After two weeks halfway around the world trying to keep my new son out of the hospital, one week on at home in the hospital away from my family and then a week at home trying to figure out how to feed Daniel through a tube, I am struggling. The energy has crashed, the stress made its mark, and my other children haven’t miraculously become angels who are always kind, hard-working, and obedient.

I’m having trouble putting thoughts together. I’m fighting under a blanket of depression that tells me I’ve already failed. (Doesn’t seem to matter that I argue with that) I’m discouraged. I’m hurting. I’m angry. I’m grieving. I’m tired.

Daniel is obsessed with his cords and has little use for me in his heart. He tantrums if I put him in a chair, so he has not joined us for dinner (or any other meal), won’t try his wheelchair and flips out in a stroller. He doesn’t have language of any kind and that he will probably learn is only cold comfort to my grief as I see his tiny four year old body and know what should have been. I’m keeping track of his foods on a chart that I made… it’d look good in a doctor’s office. I don’t feel joy in having to chart his foods. And I’m constantly worried about him becoming dehydrated or constipated again. His tube leaks at the port where I put food in, so he smelled like vomit all day yesterday until I taped one port shut and rubber banded the rest to clinch it. It looks horrible.

Jordan is bored. I try to teach Anna lessons in school and she cries that I’m chastising her and runs crying to her room. I try to help Maggie through her chores and she cries because she’s hungry because it’s taking her hours to do a 20 minute chore list. Carolyn doesn’t hear anything I say and is constantly asking me questions about what I just said. I’m tired. I’m just so tired and I don’t have the peppy, positive solution to all this. It feels like everybody becomes unhappy whenever I touch their lives.

I’m fighting through this. I am believing that it’s going to get better. I know that thoughts coming from a depressed place are not thoughts to listen to. This is just a difficult season and I’m having a hard time finding a way through it. But I will. We will. I am not sharing this for a response. I’m sharing it for me. Because I need to put it down. And maybe my daughters will read it sometime years from now and understand that everybody struggles, but not to give up.

My view earlier.


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Just popping in to say that things are going well and this little guy is relaxing a bit and sleeping well at night.

Here’s the cute little chatterbox this morning:

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First Meetings

This is the bulk of an email I sent to a sweet friend after she visited us. It was one of the first times I’ve seen Daniel through another’s eyes and it stung my heart in both good and hard ways, because my friend’s eyes are eyes full of love and acceptance. Anyway – with many introductions in the future, I thought I’d just go ahead and share this email here too:

When you came to bring me the baby carrier and a hug, I had been looking forward to seeing you. I wanted to introduce to you and show you my treasure, my newly adopted Bulgarian boy, the little boy for whom I’ve crossed oceans. I’m proud of him. He’s beautiful. He’s easy to love. He’s full of potential. You’ve loved him and supported him from a distance and I was looking forward to that introduction.

But then the brokenness of adoption and his first years pushed themselves into the front. I walked into the room where he was with you and saw his tiny pale body and I was shocked again by his smallness and clear lack of health. I thought to introduce him, but remembered that he is not ready for introductions. I watched him knock things on his teeth and lay on his back and wished I could show you the other parts of him, but those sweet insides of his heart are protected and will bloom when they’re ready, not on command.

So it was a meeting of love and a meeting of grief when you came. Thank you for loving us through both. Daniel is a very loved tiny boy and I’m lucky to be forefront to watching him learn and heal.

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On the Mend

Just wanted to say that we’re doing well and it is SO GOOD to be home. So good.

Carolyn and Daniel are taking turns tapping the cord on their teeth.

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First Day Home

We’re to lunchtime on our first day home and it feels GOOD. Daniel is really keeping us on our toes, though! Last night Daniel was really fussy and cranky and none of us were too surprised since he has never seen our house before except that jet-lagged night before we headed to the hospital. He is telling us what he wants (it’s impressive what he can communicate without words) and quickly protests or tantrums if we don’t comply quickly. It’s a dance to be there and show him that all his needs will be met while still teaching him about boundaries. Without language, things are tricky.

Daniel is not accepting any food by mouth yet. He is having to drag a backpack around 24/7 which has also proven to be challenging as immediately after leaving his hospital bed, he’s been constantly on the move. I anticipate some sore knuckles and a sore bottom from scooting and I hope for a calming down in a few more days.

I can imagine my way ahead to parenting this new crew of five children if I don’t add in the many medical appointments in the future. Add those in and my expectations are quite reasonably, “I have no idea.”

Gut health update: Daniel has not had a bowel movement since Wednesday despite repeated doses of Senna (a laxative), miralax (stool softener), and glycerin suppositories. I think it’s going to take some time for him to learn how to have a BM without enemas. Not sure how to walk him through that without getting constipated. It’s a bit of trial and error, I think. We’re to call GI on Monday if he hasn’t gone (according to one doctor) or just do an enema (according to another doctor) and the plan for when to do these things was frustratingly vague with them saying they don’t want him dependent on enemas. Umm… but what if he already is!? Anyway, this one is going to sort out slowly over months or years, I think. Low gut motility is not unusual for some people with AMC.

Just one photo, a short video, and an intro video on AMC:

The little black and yellow and orange backpack holds Daniel’s feeding pump and formula – we also fixed a rope from the backpack to his waist so that he when he drags it himself, he’s pulling the rope instead of his feeding tube. He’s not strong enough to wear the backpack, unfortunately.
He’s getting continuous feeds, because that is easier on his body. We’re to expect continuous (or near continuous) feeds for a few weeks at least.

True to form, he’s spent all of today finding all the cords in the whole house.

Grr – can’t get the video of Daniel scooting through the hall to work and don’t have the energy to work on it. I’m trying to catch up on deskwork, insurance stuff, bills, cooking and everything all at once… so you’ll have to wait til later for more.

Try this: https://photos.app.goo.gl/GOIhaSYbMZ5PDaqH2

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