It’s amazing what you can fit into a week if you give up on sleep. And if you also just generally give up on things like internet and good communication to those afar (sorry?), you can make a week seem like a year.
Since I last reported, we have done and seen much. We went to visit a self-advocacy group for persons with intellectual disabilities in a village called Abutia, a group by which I was very impressed and encouraged. Though some of their situations are hard to swallow, it is beyond exciting to hear them speak of their hopes and dreams, to help them discuss their rights, and to laugh at Colin as he attempted to open our drinks with a set of keys. Though our bottler opener has since returned to America, we have had much success in achieving many of our goals and have met several more children we plan to assist.
Friday and Saturday, I got to spend oodles of time with baby Justine, who has down syndrome, when we took her to the hospital here in Ho to get a reading of her heart. I will never forget the sight of my little baby friend wiggling on the mat, all nine pounds of her determined not to let the man get a decent x-ray, the price of which we learned was marriage. I wish I was kidding, but in exchange for a theoretical arranged marriage to me (an arrangement to which I never agreed, not even in theory), the doctor gave us the x-ray for free. But never fear, I remain fiance-less, though Ford thinks he should start taking me everywhere so he never has to pay for anything again. Just as long as I don’t come out of this married, I’ll be okay.
Anyhow, Justine and her mother stayed the night in Ho so that we could go to Accra at 3:30 the next morning to get her to a special appointment at nine. I had perhaps my most fulfilling moment of the experience yet when Justine’s mother handed her to me on the tro tro, and as we curved around the base of my favorite mountain lit only by the stars and faint flickers of the few lights in the village, I looked down at the smiling baby in my lap and couldn’t believe that I was on my way to helping such a beautiful little life grow and learn. Our appointment with the doctor determined that Justine has two holes in her heart, one of which is much bigger, and this is causing her heart to work extra hard to keep itself beating. Because of this, all of her calories are being devoted to her heart, and she isn’t growing, so she remains only nine pounds at seven months (which is smaller than I was when I was born!!!).
And then this happened: the doctor said, “She needs a surgery, but it will cost $1,000.”
And, as much as I cannot believe it either, this sentence came out of my mouth: “Oh, do you want that right now? I can just go to an ATM while you schedule the surgery.”
So thank you, all who are reading this, for making that a real thing I could say, and for changing this baby’s life. She will have her surgery within the next few weeks, as soon as her mother can sort out how to manage her eight other children while they are at the hospital in Accra.
As hard as it was for me to let go of Justine and let her go home again, I needed Sunday to rest before we did a similar thing all over again, except times a thousand. This is where the lack of sleep continues, as Carrie and I woke up at 1 am to meet nine women, six of whom were with their children, to take them to an orthopedic center past Accra. I could write a novel about the experience, and it taught me the real meaning of the Patience Project, as the twenty plus hour excursion summoned just about every ounce of patience I had. But I hope that doesn’t sound like complaining, because it was so worth it that I haven’t even quite yet processed what we were able to accomplish.
Throughout the day, all nine of us eventually got seen (though not until ten hours after we got there . . . no wonder Carrie and Ford keep joking that I should just build a new center). Gloria, who has CP, was able to get splints to straighten her feet so that she can learn to walk, and I had a blast hanging out with Gloria and her mother, teaching Gloria to count and holding her hands and trying to help her take steps. Gloria also quickly discovered that she could hit her new foot splints together to make a clapping sound, which caused much laughter. David got measured for new braces for his knees and new crutches. Aku got new crutches and has a date to return to be fitted for a prosthetic, after they do some small work on her existing limb. Akorfa also got new crutches and ordered a brace for her knee to help it straighten so they can fit her for a prosthetic. Nina was able to get splints for her feet as well and was fitted for a sitting frame so she can learn how to sit up. Etornam was also fitted for a sitting frame, as he is so small, he must first learn to sit before he can walk. Issac, who had learned to sit up by being placed in a hole his parents dug in the ground (this is actually a really good thing, though it sounds odd), was able to walk with a walker, and the doctors were excited about his progress so far. Kelvin, a boy we met just last week, needs first to see a neurosurgeon to drain the water in his head, as his hydrocephalus is so bad that his head is too big to allow him to sit up or move forward. Once he has this procedure, they can begin to teach him to sit up and eventually help him to walk.
Though this sounds like quite a lot, the amount of money it costed really didn’t add up to that much, which encourages me in that we will be able to help many more children. The women were all so grateful, and despite the length of the excursion, we were able to have some fun, too, bonding over being born on the same day and the general adorableness of the children.
I’m simply blown away that we made all of this happen within three days. It doesn’t feel like real life sometimes to be able to see a problem and, instead of lamenting how bad it is, help alleviate it in some way right then and there. Seeing little Gloria clapping her foot splints was so tangible. Holding Justine as she slept on my shoulder on the way home, wanting nothing more in the world than to return to Ghana and see her growing big and strong, making friends and attenting school . . . well, that’s why I’m here. That’s why my passion for this grows each day. It’s challenging beyond explanation, but I have learned to go into each situation with just the right balance of love, curiosity, and motivated assertiveness, and I feel connected to something completely and beautifully out of my control.
I love these children, and I know all of you would, too, if you could see their little faces and hold their hands, unable to grasp much but human connection. So for now, I’ll take the tiredness and the confusion, and they’ll take home mobility equipment, and I think we can call it even.