One-Two!

This post is raw and weary. I do not write this for people to feel sorry for us. Or to correct me. I write it for others who are down and out. You are not alone and we will make it out the other side. Keep breathing.

Just one of two sheets of blood tests we’ve run on Jordan to help us guide treatment for PANS.

We have received punch after punch over the last five months and we are breathing.

One, I left home behind and put myself in a foreign country to receive my son. He didn’t eat or drink much, he didn’t have a bowel movement for all 14 days, I was away from my husband, it was hard.
Two, we got home and went immediately inpatient, learning about doctors, nurses, hospital rhythms, finding veins in a dehydrated, tiny boy, making him sicker before he could get well, getting an ng tube, being fed formula, jet lagged. It was so hard.

We breathed. We keep breathing. One, two.

One, I learned how to blend food to feed my son instead of relying on formula and a continuous feed through a backpack.
Two, Jordan struggled for no known reason – perhaps due to adjustment of his brother arriving home, perhaps illness, perhaps a developmental milestone – you can never tell with this boy. We were shaky.

We breathed. Breathing in and out, one two.

One, a trusted team of therapists called us into CPS for safety concerns over Daniel’s fascination with cords and plugging things in. We had our family unit as a whole and the safety and legality of our home threatened and invaded. The case was dropped, but not in a matter of moments. Moments were enough to hit us a big one.
Two, a little bone in my foot was fractured and running has been my primary method of self care, burning away stress hormones and giving me a lift. Where do I turn for that now?

Breathing. Sometimes gasping.

One, I study Daniel’s medical condition and potential treatments. We investigate our local center and don’t find a confident team… and part of their team questions (out loud!) whether we are providing adequate care to all of our children… after the CPS punch, we do not entertain returning. I read and read in support groups for club feet, arthrogryposis, contracted joints and see and hear stories of poor treatment. Managing medical care is hard.
Two, Daniel goes to the hospital for minor surgeries and minor surgeries aren’t as easy as I imagined. A number of good doctors cared for us but one resident wakes me (twice!) in the middle of the night (12am and 2am!) to argue with me about what Daniel is or isn’t eating. Daniel is traumatized by the rough care of this man. I don’t have reserves for this any more.

Breathe. In. Out.

One, the little things are heavy – well visits, teeth cleanings, homeschooling, morning chores, cooking, making beds, therapy, wheelchair researching, ballet, library trips, grocery trips, counseling for one child…
Two, three months after attempting primary care doctors and physical therapists, I learn that the toe is not sprained but broken and am put into a walking boot for I don’t know how long. Running is still out. All the races I’d planned for this year are canceled or jeopardized. It sucks.

In. Out. One, two.

One, the medicines we keep trialing for Jordan keep being unhelpful…. working onto them and then weaning off. We consider that he may have an autoimmune disorder called PANS and begin treating for this. Jordan descends to serious self harming and extended screaming and thrashing. The son I love is hurting.
Two, I’m waiting for. It’s going to come.

Breathe. Breathe.

I’m struggling with depression. Brian is too. We are both drained and tired and we alternate giving each other respite, but we are still hanging somewhere below sufficient. People keep telling us to ask for help. Dangit, we have asked for help. There just isn’t anybody who can help with Jordan and he’s the one that is taking more than 100% of what we have. I can’t fix him and we haven’t been able to help him… we want so much for him to be out of crisis (and he is much better this week than last week) but there isn’t somebody who can manage him besides us. It’s not fair that Jordan is struggling so much. It’s not fair that he’s so unhappy, that we can’t go anywhere with him, that the entire family is grounded because of him. It sucks. I grieve this loss for all of us.

Don’t you ever even consider that I resent Jordan, though. It’s not his fault. He’s just a little boy. I cry out to God for mercy and I long for heaven’s redemption. We hang onto belief that this difficult season is exactly what it is – a season.

These are what we remind ourselves of and this is what keeps us going:

1. Little kindnesses from people. Strangers. Friends. Family. That genuine smile at the checkout line. Those hours of rest last week thanks to grandparents watching the kids. Friends who take the girls for a few hours. A hug.
2. Widsom/Experience/Perspective – we’ve gone through difficult seasons before and there has always been a new season afterwards.
3. Love – We love each other. We are usually serving one another and holding each other up. We ask forgiveness of our faults and we give each other the gifts of what the other needs.
4. Giving – Counterintuitive as it seems, we actively seek out the ways that we can give to others. Writing this post has nearly undone me as when I am focused so wholly on my struggles, I can’t bear the weight of them. When we see the needs of others and reach out with whatever small kindness we can offer, I experience thankfulness for what I have and empathy towards those I love who are fighting their battles. Somehow the burden is lighter this way.
5. Conveniences – I was given the gift of a housekeeper for a couple months and we have decided to keep her on every other week to get the floors/bathrooms/kitchen all cleaned. Also, I am purchasing convenience foods from the freezer section of Costco. It helps.
6. Truths… God created us. He loves us. This world is temporal. Loving each other (caring for our children) matters. Suffering can produce good qualities such as endurance and empathy. Our Creator promises to refresh us and encourages us to perservere. We are loved.
7. Scripture: 2 Corinthians: 7But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9persecuted, but not abandoned; struck down, but not destroyed.
John 16:33 I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.
Jeremiah 31:25 I will refresh the weary and satisfy the faint.
Acts 20:35 It is more blessed to give than to receive