Thursday, November 2, 2017

Keeping Her Safe

We went to the circus on Sunday.  It was most definitely not handicapped accessible. For that matter, this entire country is not handicapped accessible. To get into the circus you walk up two sets of long stone stairs that wrap around the massive building. Easy for Rob and me. Very hard for our three littles. Aaron needs someone to walk behind him to make sure he doesn't lose his balance and come crashing down. John can't climb steps without a rail so he needed someone to carry him up those two sets of long steps and Mary also needs someone to hold her tight or carry her in case she has a seizure.

Mary was in a funk, making it hard for me to hold her hand. So poor Rob was left being the child-carrying-camel while I assisted Aaron.

Yes, we get a lot of stares.

Two children in headbands and one with canes.

We learned long ago to just tune out the stares. 

Most people recoil from Aaron. The way his little arms hang in front of him and his funny little gait cause people to either quietly imitate him in jest (break my heart) or move away from him. Most people are drawn to John. He's the one they want to pet and coo over. He's had more money and little gifts pressed into his hands than I can count.

Now we have Mary. Most people here are confused as to why we have a headband on our sweet girl. Girls here are supposed to have big bows in their hair and their hair all done up in pretty braids. So we are definitely getting some questioning stares.  Until they see her have a seizure and then they understand.

Yes, we are a bit overwhelmed right now. I won't lie. Home will be so much easier. Everywhere we go here is difficult with our three. The weather is cold so going out and walking the streets isn't a fun option. Mary wants to grab everything in her reach when we enter a store which makes shopping for anything an exhausting wrestling match.  John gets exhausted walking long distances but taking the wheelchair out has its own difficulties. With the amount of stairs in this city - it just adds one more thing to carry up and down the steps.

We are muddling through. We are stuck in the capital until Mary's passport comes. This could happen this week or next. The worst case would be the week after. After the passport comes we have to take it to the embassy and get her visa. If the visa is able to be printed that day then we can go home the next day. But if they can't print the visa.... then we wait... again...

While we are waiting we are doing a lot of talking and observing and trying to figure out ways to make things safe for Mary at home.

As soon as we met her we ordered her a headband like Aaron wears to protect her head when she falls. Aaron has been wearing a protective headband for about a year now. He can't catch himself when he falls and the scars on his head bear witness to the danger of his falls. We found the headband in our research and tried it out. It's actually made for soccer players to protect them against concussions.  It has been a HUGE help for him and he doesn't mind wearing it at all. It is lightweight and doesn't cause him to sweat.  We are so grateful that Mary doesn't mind wearing hers either. She willingly puts it on and doesn't mind us adjusting it after a seizure. It is not perfect and I am not in any way endorsing it but it does cushion their heads when they fall.

We bought no-leak sippy cups so that her drink doesn't go flying and spill when she loses it. We ordered suction cup plates and bowls and cannot wait to use those instead of the glass ones here. We have already had one shattered bowl and are doing our best to prevent more from happening!

We realized rather quickly that sitting in a chair without something to hold her in the chair was a recipe for disaster. So we researched disability seats and got immediate sticker shock. Thankfully, we have a friend who can SEW who worked with us on designing a simple restraint made from a backpack I found for a few dollars at a thrift shop. It works amazing well. It doesn't stop her from dropping her face into her plate (or sending her food and cups and plates crashing to the floor) but it keeps her from falling out of the chair and it gives us tremendous peace of mind!!

It's also easily portable so we can take it with us to restaurants!! She can get in and out of it herself although right now we are not encouraging this. We have some things we want to do to the restraint to change it up a little but we are so grateful for a simple solution to keep her safe that didn't cost the farm. 

We have already installed gates at the top of each set of long stairs in our house in order to provide a barrier for her in case she has a seizure at the top of the stairs.

A few months ago Rob built a swing set. We had to get Aaron a special rather expensive swing so he could swing safely. We realized that Mary will need the same swing.

We will need to put foam floor tiles on her bedroom floor so that she can play safely.

We will need to get a child's sized potty so she can be independent. Right now we have to hold her to protect her.

We need bibs for when she has seizures while eating.  We have discovered the hard way how messy seizures can be!

We will eventually need to find her a safe bike she can ride. 

The list will probably grow as we encounter different hurdles.

We are thinking and considering and trying to figure it all out.

It's what you do when you have children with special challenges. 

You figure out how to keep them safe.

Nothing we do is fool proof. Aaron still falls. Mary still has seizures. She still bangs her head and her body is covered with bruises from all the falls.  It breaks our hearts. But at least we know we are doing the best we can under the circumstances.

When we get home arrangements have been made by a good friend of ours to get us streamlined into the University of Virginia's Pediatric Epilepsy center. We plan on getting her admitted as soon as we can after we get home.

We are hoping and praying that we can find medicine that will make all of our considering and planning a thing of the past. That is our greatest desire for our ice cream loving little girl.


  1. Thrilled to see the backpack-adapt in action!!! Praying for all of the paperwork to come together as quickly as possible.

  2. Hopefully the right combination of meds and good doctors will lessen the seizure activity. It sounds like she has a LOT right now. Her poor little electrical fire brain. I hope you look into cannabis as an option for her seizure control. If you are okay with the strong sedatives and benzodiazapenes and other chemical lab compounds being pumped into her, cannabis shouldn't scare you either and there has been AMAZING results with seizures and cannabis. Just look it up! She deserves relief and safety.

  3. I'm sure there is a med out there that will help tremendously, and I can't wait for you to find it! You are doing a great job!

  4. There is a light in her eyes now. She is happy. love John's light too. God is good that light is from Him for the love you are giving them too.

  5. Thank you for sharing your experiances. Your younger boys look just like their older brothers, all very handsome. Hopefully Mary will get medication at home to help control her seizures better. The headband is a great idea to help protect her now. God bless and hope you have a speedy trip home.

  6. Many thanks for the update!

    Don't stress yourself with many activities. For Mary, probably the whole change in environment is overwhelming enough. If you can stay indoors wihthout the boys crawling up the walls, then do just that.
    Keep it simple. She has a lifetime to play outdoors once you are home.

    Hugs and prayers

  7. Oh, Julia, breaks my heart...yet I am so thankful that these three children are yours and you are theirs. I hope all the paperwork will get done in record time so you can fly home asap. And I am so thankful the UVA Ped. hospital is in your backyard, and that Mary will get a thorough going-over there shortly.

    Re. those huge butterfly bows that little girls wear in Mary's country - could you attach a side-bow to her protective headband, to cut down on a few rude stares (and pretty it up, though she's already so pretty that adding a bow would be gilding the lily!)? And might elbow and knee pads, like skateboarders wear, be helpful to her until everything gets sorted out?

    Hang in there - I told a lady I met at the dollar store about Mary, as we were both selecting items for our Operation Christmas Child boxes - she and her husband hope to adopt internationally someday, but were unaware of RR or BOM. So she heard all about them - and Mary (and Aaron and John), too! ;-)

    Best wishes to you all, and prayers for a quick and safe return home.

    Susan in Kentucky
    Advocating for adoption!

  8. Oh goodness, that picture of Rob and his girl! <3 I am so glad for your family. Sending prayers.

  9. Such a precious little girl. We're so happy she's in a loving family now.


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