No Hands But Ours Blog: http://www.nohandsbutours.com/blog/
(I’ve shorten the below blog (in blue) from NHBO so that if you are skimming you will get the gist of my heart….but if you have time PLEASE click on the link above and read the entire blog post…it is good! <3)
Our plane from China touched down 2 years ago with Josie. And we were off to the races in terms of medical appointments and diagnoses. Becuz until you get a “diagnosis” you don’t get any help. It is a looonnngg process to get in at the specialists and get in at the therapy centers.
Appointment after appointment. Phone call after phone call.
And when we were doing our research about cerebral palsy we realized that every child is different. There isn’t one CP kiddo who is exactly the same. So it is really hard to get a “true” picture on what the future will hold. Some kids with CP have no cognitive delays but have trouble walking. Some have little trouble walking but can’t talk, you get the picture.
But with Josie we “kinda” knew where she was at. We had a “plan”. Do therapy once a week and she will continue to walk with her sticks and get stronger and stronger.
Now we didn’t know that her hips were so out of line and would need surgery and would set her back A LOT. We didn’t know her eyes were so bad and needed surgery. We didn’t know that she has dyslexia and so many cognitive delays and will struggle with school.
And in all our reading “they” tell you that CP is NOT progressive. Meaning it doesn’t get worse. Which is true….but it my opinion it is progressive. Her brain damage won’t get any worse but as kids with cerebral palsy grow their bodies can’t support themselves as well. And then their muscles get tighter. And it is a snowball effect.
And that is the part we didn’t really understand.
We can see Josie is getting “worse.” Her body is growing faster than her muscles can keep up. Her body functions will get harder and harder as she gets heavier and heavier.
Just the other day she couldn’t pull herself up anymore just using her arms. She is 83 pounds now. (She is still 50% on the growth chart for an 11 year old!) She has made up for a lot of malnutrition and is healthier….so I’m thankful she is growing. But it makes life interesting.
She may really gain strength again this summer being able to walk outside more and get some intense therapy. BUT I’m not convinced she will ever get back to her forearm crutches…..when she was lighter she could use her arm strength to use her sticks. Now she can’t do that and her motor planning skills have gone out the window since her seizures started.
If you adopt a young child with CP you do have a “better chance” of them regaining more function. Therapy and surgeries done at a younger age make a HUGE difference. But Josie didn’t have that option. Unfortunately.
Many of our adoptive friends share a version of this story, and if allowed to speak for them, these are some things we’d like for you to know.
1. Sometimes, “How is she?” is a hard question to answer. We’ve probably answered it at least five times that day at church, school or gymnastics. Spoon up some grace if we hesitate and fumble through a response while passing each other casually in a hallway. We might just not have the energy for a coherent, summed up response for medical issues that are complex and heavy on our hearts. Still, know your remembrance was appreciated.
2. Sometimes it’s easier to share medical updates on FB, a blog, or in group email updates. We do want to express our hearts, and these help us do that when we can string our thoughts together to share at once with everyone we care about. Most likely, we can’t remember who we’ve updated and who we’ve missed. We want you to know the latest medical details, and we deeply cherish your walk alongside us.
3. All the time, we need you to PRAY. Nothing is more comforting to us than knowing that our girl has an army of prayer warriors fighting for her health and heart. We’ve felt the covering of your prayer during surgeries and procedures, and it has carrying power. We are always ready with an answer when you ask, “How can we pray?” And it matters much to us when you simply say, “We are praying.”
4. All of the time, your messages, texts and phone calls are of high value. When you email us prayers, we’ve probably read them two or three times. We likely have listened again to your phone messages while waiting for a doctor’s update. They are instruments of God’s provision of peace. Unfortunately, our to do and to go lists are long, and the thoughtful responses don’t happen. Don’t give up on us. We need you more than ever.
5. Sometimes we’d rather just hear about you. If we tend to constantly push the conversation back in your direction, go with it. Know we appreciate your effort to ask about us, but we still want to know how YOU and YOUR family are doing. Our path doesn’t eclipse yours. Have a struggle or need to vent? Tell us. We can handle it.
6. Sometimes we worry that we are burdening you with too much medical talk, and we find ourselves pretending to be more positive than we feel. We don’t share because we’ve already shared so much. Our medical journey doesn’t end after a surgery. There are always appointments, therapies, decisions, more surgeries and more days of at home care, and we wonder how many times we can ask for your prayer. We wonder how many times we can tell you that we are worried and weary.
7. Often we hear, “Let me know what I can do.” Though so grateful, most likely we are clueless about how to answer. We appreciate your offer and likely need help, but probably don’t have the energy to let you know how. It is a gift when someone asks specifically, “I would like to help you. Can I babysit your kids for an appointment this week?” Or, “I am planning to bring you dinner. Does Tuesday work?” While an incredible blessing, being served over a long period of time is also stretching. We see the care overall as extravagant provision from God, but on an individual basis, we feel like a burden.
I have to cut in here and say that just last Sunday a friend at church came up to me and said, “I want to help you.” And I could tell she was serious. She wanted to truly come and help. And as we were talking I suddenly thought of a way she could bless me immensely.
She is going to come 2x’s a week over the summer and will take Josie to her intense PT sessions up at Hershey for me. THIS IS HUGE! Barbara Ann….thank you.
And meals have just “shown up” on random days from Grandma Janet. And every time she “just happens” to bring one it is a day that I have therapy or something going on that it is sooo timely.
Another way God whispers in my heart that we aren’t alone on this journey.
8. Sometimes people praise us for adopting a child with medical needs, or they praise us for caring for them. Know that we didn’t say yes to a diagnosis, we said yes to our child. Most parents wake up each day and meet their child’s needs. Please don’t see us, because we are weak, grumpy, and utterly insufficient. See a God who meets needs for His children. See a God whose heart beats for the least of these. Don’t praise our messy selves, praise God for work that is so evidently only Him.
9. Often, laughter is a load lifter. Milton Berle once said that, “Laugher is an instant vacation.” Mini vacations are always a yes. A Jimmy Fallon clip sent while we sit in a hospital room is a good dose of medicine. When you opened the fridge to get milk, did you find your cell phone? Text us. Our house is crazy, and it’s great to know yours is too.
10. Often we are told that God doesn’t “give us more than we can handle”, but we are finding the very opposite. This is way more than we can handle. We are far outside the borders of our own capacity, but every morning God meets us where we are, replacing our weakness with His strength, our fear with His hope. Experiencing what it feels like to take steps forward only because of God is the greatest blessing of this journey.
Thank you, family and friends, for journeying with us. Our family is weary, but has had to learn to trust, release control, pursue joy, find hope and live with more intention. God has much to say, and He often speaks most clearly through the little people that He gifts us with.
Let’s all lean in and listen carefully, as the fragile ones have mighty lessons to share.