The Davis Family

Daniel steals the show again…

Daniel pretending he doesn’t know the letters… then reading numbers and letters in Carolyn’s handwriting book. This was the first time we’ve opened this book. He didn’t know how to read a line and then start back at the beginning of a new line, so Brian helped with his finger too. The last page they did had letters out of order and Daniel still knew them!:

Before – trying a few letters he didn’t know. Then starting to read the alphabet in order….. and not wanting to continue down the page. haha

Daniel and Brian singing Old Mc-Daniel:

Daniel and Anna singing silly together earlier that day:

Daniel getting onto the couch… I need to do a new video – he has learned how to do a LOT more in just the last couple weeks… getting to standing and onto furniture really well!

My sons were born with special needs… their bodies and brains limited and challenged, the roads of their lives difficult and needy. And beautiful.

And my sons were born to rejection, by their families, their friends, their communities and their medical providers. They were born to cruelty and neglect by their government and their caretakers. They were born to pain and abandonment.

And I weep. I weep for the brokenness in their spirits. I weep for the children who died before redemption on earth. I weep for the children suffering this very moment. Being hurt. Being left. It hurts. And I have been begging God to explain why He has permitted it. Permitted the mistreatment of babies and children. The families broken. And not just in orphanages, but for the abused, the refugee, the war-torn, the abducted.

Two answers He has given me, though the grief is not less. First is that there is redemption, though not usually in this life. Second is that He also weeps. I am not done asking God for understanding. But I’m here to share what He laid on my heart this morning:

He Weeps
A lament

The baby sleeps in his mother’s womb
And he breathes out life and the baby stirs
Life grows and it’s beautiful.

His dreams for the child include beauty and truth
Life long, bone deep joy and content
Passion and creating and building and LIFE.

But the life he breathes, he knows the future
He know that we’re broken and the word fallen
Evil lives here and He hasn’t yet cured it.

So that life he breathes, so beautiful and strong
Is touched by pain before it is born
There is brokenness here, still in the womb.

The Lord sees beauty in the most broken of creation
Seeing the potential, the sweetness of spirit
He loves every child, no matter… no matter.

He sees the children after their birth
Watches for mothers and fathers with love
Calls on the Church to support the struggling.

And He begins to weep.
He weeps for the cruelty
He weeps for the pain
He weeps for the children
Left in the rain
He weeps for the loss
Of the dreams so perfect
He weeps for the children.

Lord, please come again
Because it hurts
And I cannot fix it
I am too small
Too broken.
We weep.

When we got Daniel home, we got him into an orthopedist within a couple months to discuss treatment. At that point, we decided that it was best to get his weight up, have time to get settled and learn some language. So this January we went back for a second evaluation and to discuss the treatment plan. The treatment plan hadn’t changed much, so I know roughly what to expect for this stage one of Daniel’s lifelong orthopedic care.

So what’s the plan and what’s this about lifelong care?

In reverse order: Daniel’s orthopedic consition (arthrogryposis) is not something that can be cured, but we can get his legs and feet in a more functional position than they are now. However, as he grows and uses his body, he will “relapse” and the club foot will curl under again and so forth. The more often he has surgery, the more stiff his joints will be for the rest of his life. Deciding what to do and when to do it is a flexible process and takes lots of factors into account. Everything from leave the foot curled under to muscle transfers, to joint restructuring, to serial casting and minor surgeries all the way to amputation and prosthetics.

So that means that I only kind of know the treatment plan. I know what the most likely current plan is and it’s 6 or more weeks of casting from above the knees to his toes with weekly cast changes. These won’t be comfortable casts, because each time, the foot and knee are stretched a little further towards the nominal position and held there by the cast. After we see how far we can get with that, we’ll do whatever surgery seems like the best option at the time, based on how the casting went. We have to overlay Daniel’s mental health with all of this, since he has significant PTSD/fear/trust issues… which means physical therapy might be especially challenging or unsuccessful and which means that finding a provider with top notch bedside manner is imperative.

The local doctor seems to know her stuff, but she and I and Daniel are not a good match. She is brisk and doesn’t connect with Daniel and doesn’t explain things in detail to me. Also, the hospital is not an efficient, well-run program (I love Shriners mission, but they can be poorly administrated.). I wanted to love it, but I just couldn’t imagine feeling peaceful and confident putting Daniel in their hands. So that means we’ve got two further consultations before we choose a provider to provide care… both now and in the years to come. Unfortunately for us, the doctors with the highest reputations are all on the east coast! Thankfully, they’re in network for insurance coverage, but there will be a lot of traveling and lodging expense along with figuring out how to provide care to our entire family since Jordan doesn’t travel.

In April, Daniel and I will fly to see two different doctors… one on April 1 and one on April 24. (For those who are curious – Dr. Louise Reid Nichols at Nemours/Dupont Hospital and Dr. David Feldman at The Paley Institute.) I leave the day before and come home the day after. I should be plenty tired!!! Daniel in an airport and airplane for 6-10 hours. Wheeeeee.

I’m glad to have this many decisions made and these appointments scheduled. I’m anticipating Daniel receiving treatment this summer? I’m not sure.

Afterthought: There are so many therapies and treatments and appointments recommended, suggested, and expected by the myriad of providers that my children see. As the care coordinator for: myself, my children, and for my family as a unit – I optimize what we do. That means I decline a lot of therapies and appointments. I am managing the family’s health for a long ultra marathon. I cannot sprint, except for short periods, without our family’s health falling apart. That usually looks like individual’s needs getting neglected to the point of fallout – caused by meeting every expectation by a provider for a different individual. Sometimes it’s me that burns out. Sometimes it’s another one of the children. Regardless of who it is – it’s serious and it’s important that I prioritize, even when it means not meeting some peoples expectations of me. Sharing for my fellow over-achievers who are battling mom guilt!

Decorating the tree!

Decorating cookies!
I baked the cookies (without help, because that’s the way I roll) and handed the cookies and frosting over to the kids to finish!

Watching the Nutcracker with friends. No pictures.

Carolyn’s date – Watching the Grinch and going out for ice cream. There were incredible tales of the amount of sweets consumed.

Christmas Eve.
We opened all the gifts that the kids bought or made for each other…. and gifts from friends and the pajamas I bought this year on Christmas eve. 75% of the gifts were made by Anna. She worked hard for months!

Christmas Day.
We dug candy out of stockings and opened Christmas gifts from us this morning.

The night before:

The cousins visit with all the kids and then the girls sleep over at the Mellinger’s house afterward!
I can’t find pictures. Ah well. It was good!

Grandma and Grandpa come over and bring the girls back.

Grandma C’s house for New Year’s party with the girls!

Grandma D’s house for a holiday visit with the girls! Surprise birthday for Grandma and Kevin.

Daniel gets his new power wheels!

I’m often out walking or jogging!

Maggie’s date was a tarp, some McDonald’s and some fire at a campground for the afternoon! They roasted apples and lunchmeat over the fire. 😀

Anna’s date was a trip to the ice skating rink, then a coffee shop and a stop at the mall and library.

Well, we wrapped up the holidays with lots of drawing of floor plans and sweet notes and have started up the new year with medical cares, starting with Jordan’s teeth under anesthesia. It’s been a great December! One for the books!

Other:

Brian builds a popsicle stick cobra:

Daniel practices standing today (January 14, 2019):

If you don’t know – I’m a homebody. I like my home. I like being home. I generally prefer being here to anywhere else. I can keep it predictable here. I can establish a rhythm here. My kids are most likely to be calm here. I know where everything is and it’s all mine. It’s just lovely to be home.

This new year is likely to be a highly medical year – professionals out my ears. I need professionals. I appreciate professionals. I admire and am glad to be able to hire professionals. But I would much rather, without a doubt, do things on my own. I like being the boss, for one. I don’t like multitasking or incorporating new information (you know – like learning new things or adjusting my natural rhythm.). I know this is a bit whiny, but I’m just being real, y’all. It’s also really tiring to explain myself to professionals who aren’t aware or informed about the whole of our family dynamics. Cardiologists are rarely also trained in autism. Occupational therapists are rarely trained in trauma. Counselors are rarely trained in developmental delay.

I don’t mind being a teacher much at all, but I find that advocating for myself and my kids does get to me. (Teaching is where a professional is interested in understanding a larger view of my child’s life. Advocating is more like me arguing with a professional about what he/she doesn’t know about my child.) I get fatigued quickly (on a mental and emotional level) and I am on high alert during interactions, because my kids do not fit into boxes and are not even safe if out-of-the-box measures aren’t taken. Small example: Jordan had a sedated dental procedure. If he’s touched physically, he may go into panicked fight mode. If his gums are dinged up much, they may get infected, because they take a really long time to heal. If he doesn’t have somebody very close to him in the bed, he will climb and fall out of the hospital bed and fall. Just taking the IV out can cause trauma if we’re not fast, because of the intensity of his reaction to touch. It all went well, but I was exhausted by the time I got home.

Okay – I started this blog just to impress myself (myself!) with how much I’m doing this year. I haven’t looked closely at the calendar yet, but I want to see what I’m doing so that I can be gracious with myself.

I’ll just put approximate dates, since it’s weird to put more on a public platform:

January:
Jordan sedated dental
Daniel for major orthopedic review and potential decision to start treatment
Counseling for me
Counseling for a child
Daniel cardiology to discuss echocardiogram – hopefully will get a thumbs up, but may be told scarier stuff… like needing a heart catheterization to check pulmonary hypertension.

February:
Counseling for me
Probable counseling for child (hope the scheduling works out!)
Daniel feeding clinic…. probably going to reschedule this for 6 months out – we’re not ready.
Daniel nephrologist (including labs and urine catch… kid isn’t potty trained – hope that goes okay!)
Daniel physical therapy annual evaluation
Third post-placement report for Daniel
Anna, Maggie and me dentist
Carolyn probably needs some teeth pulled for crowding

March:
Daniel and Carrie dental cleaning
Ooooh – our 14th wedding anniversary! definitely need to bake a cake for that!

Possible major casting and moderate foot surgery for Daniel this spring. Have to decide if we’re traveling for that or staying local. I’m nervous about it! Time to make morning phone calls and hopefully get a shower!