Life giving

The idea of people and situations being life giving was brought to my attention earlier this week by one of my closest friends. I have been thinking about life giving, and what that means, for most of the week now. A week that has been far from easy. A week where challenges and the frailty of the human condition have been ever present.

For something or someone to be life giving, it must be revitalizing and energizing. The Merriam-Webster dictionary defines life giving as giving or having the power to create or support life. Yet, I think it is more than that. Or, maybe the way I interpret life to be is more than that. I think life giving is something or someone who gives my life true purpose and meaning. It can be life giving to try to love others unconditionally, and watch the guard around a heart come down. It is life giving as I experience the gift of other people, young and old, whose presence I would not want to live without. To be life giving is a joy to the spirit which is felt when doing something meaningful, or being with meaningful people.

I have been grappling with applying the idea of life giving in the midst of hardship. The last school year, after only three months of being at the new school, Mia's first grade teacher requested further testing to be done. She had concerns about Mia's ability to work independently, follow instructions given in the classroom, and make academic progress. It was redemption, really, since up to that point, only three months earlier, I had been told by the former school that Mia was perfectly fine and showing "no disability". A fact that brought such turmoil to my mother instinct. And so, last month, Mia began a rigorous battery of tests performed by the school psychologist and speech therapist. It was a battery so thorough that there was no other conclusion except that these professionals clearly care about my daughter. Yet, as I read through those reports, my heart broke. There was proof, in black and white letters, that my daughter was unable to make progress in the typical second grade classroom. She needed more. Much more. This was not just an ESL issue, or even a communication delay. It was more.

And so, yesterday, a day which was already tough with other things going on in my life, I entered the school building hopeful. Perhaps this IEP meeting would be different. It no longer seemed that I was the only one who saw the issues my daughter struggles with. As I entered the room I thanked the professionals for their care of Mia. They have genuine concern for my girl, and during the meeting it became apparent that they agreed with my mama instinct. Mia is challenged to learn in the typical classroom environment. She was not making "effective progress" offered even by having a classroom assistant in the room to help her. She needs much, much more. And so, Mia will begin daily learning in a small group resource classroom with a special education teacher. She will go back to her big classroom for fun things, such as recess, lunch, arts and music, and physical education. She can have science with the rest of the class. But her reading, writing, and math will no longer be with her typically developing peers. Because she is not able to learn like they do.

I was crushed, again, by the weight of all of this. It is so hard to have professionals say *my* child is not making effective progress. That she is unable to learn like her peers. That she will not, simply, catch up. I started to despair. Until, I was reminded of the words life giving. These people, the therapists and teachers will be, for Mia, life giving. They bring her joy. The school psychologist told me of how when Mia sees her, she runs to greet this psychologist with a huge hug. The nurse told me how Mia happily nibbles on her lunch while laughing in the cafeteria. Her speech therapist told me how Mia is so motivated to try her best with any task given to her. And the new special education teacher, told me how she is so thrilled to have Mia with her for a good part of her day. Life giving.

In the drudgery of life there are people who are life giving. I felt it through the outpouring of prayers, positive thoughts, and encouragement as I endured this week. Those who surrounded me can only be described as life giving. They simply sustain us and bring us hope or joy, just by offering themselves. This is so true for the people in Mia's life. She doesn't care that the road ahead of her is going to be different than the road for her peers. She likely doesn't understand that it will be. Mia just sees the beauty and joy that comes with her own road and the people who are on it with her. She embraces the situation and finds meaning. Life giving.

As we prepare for China I am reminded that this trip will have plenty of opportunity to be life giving. We will certainly receive the gift of others, in both orphans and caregivers, and we will find meaning in what we are setting out to do. Life giving. As I witness unspeakable greed of an adoption agency involved with placing a precious baby girl with thalassemia who waits in Hannah Joy's orphanage, I choose to find a way to be life giving. I choose to be a voice for her, and speak out against the system of making money over saving a life for critically ill children. Life giving. And as I parent my daughter who will be on a different path than most, I will choose to see the beauty in the difference. Through parenting Mia, I will have opportunity to meet others, and undoubtedly, these others will be life giving. For both of us.

Raw Faith

Almost 12 hours ago, I received an email from Hannah Joy's hematologist. He said her liver function tests have been abnormal and he needed me to page him so we could talk. My heart started beating rapidly. This was not what I was expecting.

As we talked, he explained how these tests had been concerning him for about 5 months now. He asked about her dose of Exjade (aka, the black box warning medication), telling me how what he was seeing could be related to it. He told me she is on a pretty high dose of it for her age, so he would think about it. I then asked if her kidney function labs, which have quadrupled since she started this medication, could also be related. He pulled it up to take a look, and said, oh this is definitely Exjade, We will likely do a "holiday" and then start back very slowly. Because, Hannah Joy is otherwise responding well to the medication. Her iron overload is improving. Yet, there seems to be a big cost to my sweet girl's little body.

Since that conversation, my mind has been reeling. The medication I am giving my daughter is affecting her liver and kidneys. It's not a nuisance side effect of fatigue, nausea or diarrhea. It's liver and kidneys we are talking about. This.Is.Hard.

Earlier this week I was told I show a raw faith. Not just the kind of faith that is easier to have when all is going well. But the kind of faith that persists when life is very uncertain. The kind of faith when life is very uncomfortable. She explained that adopting four little girls, two with a chronic, life threatening condition is not comfortable or easy. It requires raw faith. She explained that saying yes to a family mission trip which will likely cost 1/5 of my annual salary requires raw faith. She said that raising Mia, who has a life complicated not only by beta thalassemia major but also Russell Silver Syndrome and learning disabilities requires raw faith. And I think now, given that Hannah Joy is showing serious complications to a medication I am giving her, requires raw faith.

As I have been considering this concept of raw faith, I wonder if it requires acknowledging that sometimes things come up that are completely out of control, and there is nothing I can do but put trust in the fact that this is where I am *supposed* to be. There are no easy answers. Life is filled with uncertainty and hardship. No one is immune to struggle. Yet, somehow, there are mercies along the way. A mercy here is that Exjade is not the only medication to treat iron overload. Hannah Joy could get an infusion pump. I have a good hematologist who understands the liver function test abnormality, and I have the ability to speak up which connected the kidney function tests.

Last night, I did not give little Hannah Joy her dose of Exjade. It is the first time she has missed it in the last seven months, other than one other time when she had a fever. I am diligent about both girls' medications. But last night, I could not do it. My little sweetness asked why she wasn't having her ketchup and medicine. As she placed her little hand in mine I asked God for clarity. I asked for help making this decision about which medication will be the best and safest to give to her. I have raw faith that He will answer.

Wish list

Next month we will be heading back to China. We are going to be going to Henan as well as to Guangxi this time. I have been told that Henan is asking for help, and is showing needs greater than Guangxi. I cannot even fathom that thought given what I have seen in Guangxi. It is exciting to think that our adventure this time will include a few days in a new place for us.

Many have reached out to ask what we might need or be helpful for us to have on this trip. We are incredibly grateful for the thoughtfulness and provision, and have been trying to prioritize what would be the most helpful. This trip, we can take 14 checked bags, as 7 of us are traveling (our dear friends Ellen and Nate are joining!!). Fourteen! I have become quite the master of packing, and plan to use every inch of space we have while packing the little we need for ourselves in carry on bags. Lord help us as we shlep it through airports, trains, and buses!

Here is what I am thinking we could use:

Similac premature infant nipples (found on Amazon)

Neosure premature infant formula powder

Vitamins, including infant and children's daily multivitamin (some children vitamins with iron and some without iron), and adult daily multivitamin for the caregivers

Sesame Street DVD's (English, and used in good condition is fine)

Infant carriers (used and in good condition is fine)

Any craft type of activity supplies. My girls like to engage with some of the older orphans by making things with them. Some ideas are: rainbow loom bands. Embroidery thread. Beads. Markers. Colored pencils.

Aveeno Eczema Therapy moisturizing cream

Bumbo seats with straps and trays

Any special need equipment (posterior walkers or bath seats)

M&M's. Lollypops.