Thanksgiving/ Five Years **Now with photos!**

The day before Thanksgiving marks the anniversary of Reuben's initial diagnosis of epilepsy. It would still be another year and a half before we would learn the root cause of his seizures (ring (20) chromosome syndrome), but at the moment, we knew 1) that our baby boy was not going to just die for no reason because 2) epilepsy is something you can LIVE with!

This year marks five years since that Thanksgiving that changed so much about our life. Five years seems like a lot longer — more of a "milestone" year than three or four.

It was also during that hospital stay five years ago (when I was 10 weeks pregnant with our fourth, Rinnah) that I was up in the night walking down the hall to the bathroom (because I was 10 weeks pregnant!) and was overcome with the realization that the fear of adopting a child with special needs had been completely and suddenly lifted from me. There's nothing like realizing you are already the mother of a child with special needs to help you realize that what we call "special needs" is not something to be frightened by.

What I remember most about that day five years ago was the intensity of the joy that both Matt and I were filled with when the doctor came soberly into Reuben's room to inform us that he had epilepsy. After both of us, individually at first, and then together as we realized the other was also feeling that way, over almost the whole of the previous year, were having a sense that we weren't going to get to keep this precious baby boy, and then to come off of a few days where he'd twice completely stopped breathing for a long enough duration of time to start turning blue in the lips, and to know that God in His mercy had been gently preparing us for months to lose our baby, to then hear that he *only* had epilepsy — a condition that is not incompatible with life — felt like we had gone from being certain we were losing our son to having him given back to us all in a moment.

Yet, at the same time, we *did* lose our son, at least the son we thought we had. Many of those losses have come slowly as we grieve for different things that Reuben will never have or do or be, and many come at unexpected times. I laugh now as I think of one of those milestones — when Reuben started kindergarten last fall. As a young mother, I often heard from people when my first-born was still in diapers as his third birthday was closing in, "Well, he'll get there — after all, you never see a kindergartener going off to school in diapers!" Well, turns out they were wrong. I sent a kindergartener to school in diapers. And this fall, a first grader, too, but sending him as a diaper-wearing first grader didn't cause the same catch-in-the-throat sensation that it did when he was a diaper-wearing kindergartener.

I hit another rough spot about two weeks ago when a rougher week culminated in an ordinary Saturday when our three biggest oldest most capable (how DO you categorize it? Owen, Leah and Rinnah. My first, second, and fourth. The second, third, and fifth oldest of our six...so far. Let me digress here. I've never written about it, but I laugh at all of the stereotypes on birth order when it comes to our family. Rinnah, as the fourth of what will soon be seven, is technically the middle child. But she's anything but the middle child. She's part of the upper half as far as the ones who are the most capable and are given the most freedom, responsibility, and independence. She's one of the lower half when it comes to size and age, but nowhere does she fall in the middle, except for the order in which she joined our family.) Anyway, those three went heading up to their friends' house up the road, and were back soon, informing me that their friends' mom and dad were out taking a walk together (their oldest is 14 and able to keep an eye on the younger three children who play with our kids) and afterward they were going somewhere all together. I felt a wince of emotional pain as I thought about how much *I* would like to go with a walk with *my* husband on a beautiful fall day like this, but brushed it off. However, a while later when I looked out the front window to the regional trail that runs in front of our house and actually saw them out walking together, I lost it. Tears at what I couldn't have, at what I wanted that just won't ever really be mine — the simple chance to spur of the moment say, "Matt, it's a beautiful day — let's go take a walk!"

Yes, I realize that we still have rather young children, and that in a few years Owen, too, will be old enough to stay home for a short period keeping an eye on the kids while Matt and I go out for a walk, but unlike some families where the phase where the kids are too young for some of those things is a temporary thing, the life that God had called us to is one where the phase where we have children who are able to stay home and care for the needier ones is the temporary phase. There will come a day when our last capable child will move out and it will be once again me and Matt and "little" ones who need someone's constant supervision.

[A note: I realize that there are many solutions to this situation — we have many friends who are willing and capable of coming over and watching our children, even our children with complex needs, so we can get some time alone together. We have PCA (personal care assistant) hours for both Reuben and Krassi from the county that we are not currently using in that form that we certainly could down the road which would allow us some regular flexibility. Not being able to go for a walk isn't the real issue. The real issue this raised for me was that I was letting myself be discontent with the good things that God has chosen to give me in the life he prepared for me — a life that includes Reuben and Krassi, not accidentally, but by his good design, and I can, and have already in a number of places, go into that in more detail.]

That very night, the next Psalm on my "read-through-the-Bible-in-a-year" bookmark was Psalm 16.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance. (v.6)

Oof. Coming after that day, that was kind of a tough one to read. But it's not alone.

I say to the Lord, “You are my Lord;
    I have no good apart from you.” (v.2)

"No good," apart from Him. Not walks, not the freedom to do what I want to do, not having all of my children out of diapers. None of those things are good apart from him, and apart from Him, he who is my only good.

I have set the Lord always before me;
    because he is at my right hand, I shall not be shaken. (v.8)

And if he is NOT at my right hand, that promise does not stand - it's a conditional promise, conditional on my choosing to stay near him.

The Lord is my chosen portion and my cup;
    you hold my lot. (v.5)

"My chosen portion." It's a choice - choosing to walk with him, choosing to look to him to be everything I need.

You make known to me the path of life;
    in your presence there is fullness of joy;
    at your right hand are pleasures forevermore. (v.11)

Therefore my heart is glad, and my whole being rejoices;
    my flesh also dwells secure. (v.9)

When HE is put in the right spot, then I can have fullness of joy — my whole being, not just some spiritual corner while the rest of me is miserable. And one thing I love about my God is that he doesn't leave me to figure this out on my own, but rather, he makes known what the path of life is. Life worth living, full of joy, gladness, security, is life lived wholly for him and in his presence.

There's a beautiful ending to the story of this weekend, too. And I'm taking the time to record it, even though as I'm finishing this post up it's almost eight months after I started writing it, because *I* want to remember.

The next day was Sunday. A beautiful Sunday in November - warm enough that we were able to get outside. And if any of you know me and Matt, one thing we really enjoy doing together is working outside in the yard.

On this particular Sunday we had the added bonus of having been given two flowering crab apple trees by our neighbor/2nd cousin who works at a garden center that was clearing out stock they didn't want to winter over. It was late in the season to be planting, and the trees were quite root-bound, but there's nothing to lose, right? Our kids' friends (you know, the ones whose parents got to take a walk together the day before) were over - the girls were playing "house" with things gathered from around the yard. We put the boys to work digging a hole (Owen's always wanting to dig holes) and Matt built a fire with Reuben. Krassi spent some time in the wagon watching while Matt and I got to (together, mind you!) settle that tree into its new home in the ground.

How could anyone not want to give their life fully into the hands of a God like our God? Yes, absolutely the pleasures that he offers are not the pleasures that this world offers, but as I live this life, I know that it is true when the Bible says that he knows our weakness and is tender and kind. Giving your life over to this Master is such a worthwhile decision! He requires everything of me - more than I am capable of giving many times - but he offers so much, and a beautiful afternoon to plant a tree with my husband, besides. Coming after that week, and what he was showing me in Psalm 16 the night before, I know this day was a deliberate gift from him.

This photo was taken in July 2016 because the photos we had of us actually planting the tree have gone AWOL. Gone. Done for. Without a trace!!! That's only one small reason that this post was long in coming, but since a post, especially one this long, isn't as nice without pictures, I thought it would be worth ending with a photo for those of you who found this obscure post AND took the time to read it through to the end.

***And now, nearly a year later, I have finally found the photos we took on that lovely November day!

Boys (Owen in the center) digging the hole for the tree.

Girls playing "cooking" with random yard items.

Me and Matt planting the tree!

Reuben with his fire.

Krassi in his wagon.

Weight gain

Krassi had an appointment at the specialty health care clinic today, so we got another "official" weight on him, annnnnd......he's up to 42 pounds, 5 ounces!!!

I *knew* he was getting beefier. ;) (If you can call an 11.5 year old "beefy" at 42+ pounds!)

Small details

With the colder weather outside, we're turning again to indoor tasks. It's been nice that it's been a milder fall because that means that we can use messy tools like the table saw outside!

Last week we started working on finishing the stairs down to the entry landing. Please note the wood on the top tread (the riser is also in for that one) and the stringer along the north side.

That was it for that night, but then last night we were able to get the stringer on the other side of the stair put in, and somehow in between days, Matt managed to put the nosing on that first tread, too!

Putting the south stringer in place meant that we could finally add base trim around the tiny bit of wall between the stair runs, so we went from this...

 ...to this...

...which looks a whole lot more finished.

And that was that for that night, so maybe in a week or so we'll get another stab at it. The nice thing is that now that the stringers are both in place, risers and treads are something Matt can do single-handedly, so he doesn't have to wait for a time when I'm available to help.