Another Small/Big Step ~
Today Dave got to come with us to Horse Therapy for the first time. He got to meet Bretta, the most patient horse on the planet. Shannon had a course set out for Rachel to lead Bretta around to continue to learn to “be the boss.” She is working on getting the lead rope shorter and helping Rachel get brave enough to show Bretta where she wants her to go. Let’s just say that for now Bretta is still the boss. Sometimes Bretta waits so long for Rachel that she falls asleep.
The good news is that Rachel got all the way on Bretta today and sat in the saddle for about 2 minutes, shaking like a leaf, before she insisted on getting off. That’s a pretty big step for her.
Wooo Hooo Rachel. We are so proud of you!
Another small/big step that happened this week is that after three different tries at a hearing test, they were finally able to tell that Rachel’s hearing is within the normal range. That is so good to be able to cross that off our list of reasons for Rachel’s “disconnectedness.” So we are content and even celebrating these tiny little steps, knowing that in time they will result in some big moves forward!!
Back to Horse Therapy ~
Notice Shannon’s helmet matches Rachel’s. Gotta love a girl who loves pink.
Today Shannon continued to work with Rachel on being comfortable around Bretta and learning to “be the boss of Bretta.” They started by putting pony tails in Bretta’s mane. Then Shannon went to the other side of the barn and told Rachel to bring Bretta to her. Bretta is so well trained. She stood by Rachel and watched her and every step Rachel took, Bretta took one too. Every time Rachel stopped, Bretta stopped. I hope this horse lives to be 100. She is a gem! Watching Shannon today, reminded me how I need to be more patient with Rachel. Shannon gave Rachel instructions once and then waited……a very long time. Often when I see no response in Rachel I repeat myself. A friend who is a speech pathologist told me that every time I do that, Rachel has to start all over processing what I said. Rachel took soooooo long to process what Shannon said, but eventually she would take a few steps, see that Bretta would follow her and then stop. She waited and did that over and over and in about 20 minutes, got from one side of the barn to the other, leading Bretta. Shannon didn’t have to repeat herself, she just had to wait. It was fun to see Rachel begin to realize that Bretta really will follow her if she leads.
Notice the little pony tails on Bretta’s mane.
I need to learn to be better at waiting. Love this little smile!
We Are Back From Our Dream Trip ~
We had such an amazing time in Estonia. We loved the city of Tallinn and all there was to see there, but we especially loved the people there and seeing Jordan most of all. We met many incredible people that have become very special to Jordan. It was hard to leave. One thing that surprised me was how “present” and happy Rachel was. It must have to do with having our whole family in one place and doing fun things together all day long. We saw more smiles and more joy from Rachel than we have seen in years. Here are just a few of her smiles.
The following video shows just a taste of the fun we had with Rachel being so happy on our trip. I hope we can find a way to keep this going now that we’re home!
Tallinn Estonia
We are having an amazing time. Rachel is much more connected here and so happy to be around Jordan. I wonder if since things are so new and unexpected, it’s forcing her to be “present” to be able to navigate her way through the day. That’s just a guess from Dr. Vickie. Whatever the reason is, we are enjoying every minute!
This trip really has been a “Dream Trip” so far and we still have a week to go!!
Our Dream Trip Days 1-3
The day before we were leaving I got up and went to the computer to do the boarding passes online. As I was typing in Rachel’s passport information, I noticed her expiration date was different than the rest of ours. I was sure it was a typo because we all got them at the same time. When I called, I found out that children are only given 5 year passports. All of the sudden I realized that we had the real possibility of not going on this trip in less than 24 hours. Dave, Rach and I raced up to Seattle (about 3 hours away) and got a new one just before they closed for the day. How in the world did I miss that detail? We got home with enough time to finish packing and got a few hours of sleep before alarms went off at 4:00 a.m. the next morning. The flight to New York went pretty well and I started thinking that this trip was going to be a piece of cake. Then the flight to Amsterdam began and all of that changed. The bathrooms were tiny and it was almost impossible to get in there with Rachel to help her. Rach did not sleep a wink and then she got nauseous and started throwing up. I began wondering what in the world I was thinking to plan this long of a trip for Rachel. Once we landed in Tallinn though and we got to see Jordan and his friend Imre, it all made sense again. We were exhausted but so glad to be here. Today was our first full day here and we went to Old Town which feels like a fairy tale. Every time the church bells went off I expected to see Maria Von Trapp come around the corner. Jordan was patient with us when we stopped every 3 seconds to take a picture. There was something breath taking around every corner. I could spend all day, every day in Old Town on this trip and be perfectly happy. I’ll add some pictures later when I figure out how to do that from here. We also got to go to the church where Jordan has been an intern and they totally changed my preconceived notion I was working on. Up until then I was getting the impression that Estonians are very stoic, not too friendly people. In the store you can get pushed a bit or if you bump a round about door and slow it down, you can get some mean remark. People seem to be whispering everywhere or not talking. I’ve had to be shushed a few times by my family for being too loud in my excitement. Then we got to Vineyard Tallinn and we got so many hugs, warm hellos and smiles that clearly I was wrong. We loved hearing Miguel teach and getting to meet the people that have grown to be so special to Jordan. What an amazing day and we’ve just started!
Horse Therapy / Our Dream Trip
When we got to the barn Rachel went right up to Bretta to brush her. After that Shannon took Rachel in the ring/ corral… whatever you call it, and set up two stations at different places. One had colored balls and the other had a basketball hoop. Rachel’s job today was to “be the boss of Bretta” and pull her by the rope as she put one ball at a time into the hoop. So she walked back and forth to get a ball and then back to the hoop. The point was to get Rachel used to guiding Bretta and “telling” her where to go instead of being led by Bretta.
Let me just say there was a whole lot of Bretta leading Rachel around today. When we got done Rachel was covered in dirt and sweat. Not sure Rachel got the hang of “being the boss” but she sure got a good walk in for the day. No attempt to get on Bretta today, so we’ll see how it goes next time.
We are packing our bags for our dream trip to go to Estonia to see Jordan. Here is a picture I borrowed from his blog of the beautiful Old Town in Tallinn.
It used to be my mom’s dream to go and visit Europe but she never got the chance. I’ve had that same dream since I was 15 and now I’m getting to go! Thanks to my mom’s sacrifices when she was alive and her generosity after she passed away, I’m getting to live out her dream and mine! I so wish she was here so I could say thank you!
I miss you Mom.
Horse Therapy ~ Day Three
These are the two best buddies at the barn. They were our greeters today.
Beautiful Bretta just waiting for Rachel to arrive.
Shannon is briliant and oh so patient. Today she had Rachel stand on one side of Bretta and toss a ball over the horse’s back into a basketball hoop. She got Rachel to come closer and closer to Bretta.
Then Shannon got Rachel up on the mounting block and tossed her a ball from the other side of Bretta. Eventually Rachel had to put one hand on the saddle and lean way over Bretta to catch the ball. Then Shannon helped Rachel slowly lift her foot and put it on the saddle and rest it there. That’s as far as Rach was willing to go today.
So they went for another walk with Bretta. Even though these are small victories, it still feels like we’re moving forward.
This is the view from the barn. There’s something so refreshing about being out here.
Horse Therapy ~ Day Two
When we got to the barn today, Rachel went right up to Bretta to pet her. She even brushed her while we waited for Shannon. It helped that there was a fence between Rachel and the horses.
When Shannon took her inside the ring, Rachel stood for a long time and then walked over to Bretta to pet her.
Shannon spent about 40 minutes trying to get Rach on Bretta. She was really patient and broke it down into tiny steps. Rachel wanted to do it so badly, you could see it in her body and on her face. She put her hands on the saddle and would lift one leg up to knee height and then put it down again. She was shaking like a leaf the whole time, but she kept trying.
Unfortunately today was not the day. They settled for a walk around the ring. Maybe next week.
It probably seems like little tiny steps from the outside, but I know that for Rachel these are huge giant steps she is making. I so wish I could make her know how proud I am of her and how much I understand that she is one of the bravest people I know.
Horse Therapy ~ Day One
Hello Beautiful Bretta! It’s nice to see you again
Today was Rachel’s first official day of horse therapy. For a few minutes I wasn’t sure I was going to be able to get her to go in. She shook with fear for most of the hour we were there.
This is as far as Shannon could get Rachel to go. She tried everything she knew, very patiently I might add, but there was no getting on that horse for Rachel!
So they settled for walking the horse around the barn. Actually Bretta walked Rachel, but who cares? Rachel’s shaky smile was precious!
Looks like there will be plenty of new friends around the barn for Rachel to get to know.
So our first experience with horse therapy was a great success. To get to the end of the hour and not be trembling with fear, is a victory in my book!
Feelings ~
Rachel with Grandma Glenda
I’ve been working with Rachel as much as possible, trying to identify her feelings. We play with emotion apps on her Ipad and I ask her questions to try to get at how she feels. Yesterday I sat with her on the couch for about 30 minutes, gently trying to coax some words out of her. We had about 29 minutes of silence and maybe 1 minute of words. I asked her how she was feeling….no answer. Are you happy or sad? ”Sad.” Long wait. What makes you sad Rachel? The following 29 minutes were followed by long waits, then a new way of asking that question. No answer came from Rachel but she did look over at a picture on the wall of my mom who passed away a year and a half ago. She didn’t look at it once, she looked at it seven times. Hmmmmm so does that mean she is still grieving the loss of Grandma Glenda in ways she can’t explain? I wonder. As much as I want to help Rachel and speak to her in a way that reaches her mind and her heart, I can’t. l have to remind myself that the Lord knows her and loves her even more than I do and He can speak to her in ways I will never be able to. So I pray and ask Him to whisper peace to her heart and comfort to her mind.
“The Lord is near to the brokenhearted and saves those who are crushed in spirit.” Ps.34
“You put my tears in Your bottle…this I know that God is for me.” Psalm 56
Sweet Mystery ~
I have often wished I could get a peek into Rachel’s mind to see with my own eyes the way she understands life. When she was young, up until about 3 years ago she loved to sing worship songs and dance around the room or if we were in the car she would sing really loudly with her hands up in the air. At church she always lifted her hands during worship and sang loudly and really off key. I loved that! When she was 13 or so she started asking us if she could get baptized. She saw it often at church but I always wondered what she thought it meant. We talked about it but how could she understand all that baptism represents? We put her off for a long time because we just couldn’t believe she could actually make that choice or understand what it meant to be baptized. Finally I realized that just because her mind works like someone who is four years old, maybe her spirit connects on a different level. Clearly there is a place in her that loves to worship and desires to know Christ. I look forward to heaven when I’ll know what Rachel really knows and see how her spirit responds to the Lord. Here is a picture of her baptism about 6 years ago.
She was so scared of getting her face wet but she pushed through so she could go through with her baptism. Here is Kate giving her a hug afterwards.
Now it’s been three years since Rachel has connected at church, sung a song or anything. She still barely responds to anyone who comes up to her to say hi. But last week at the very end of the service on the very last song, she began to sing and she lifted her hands. I tried so hard to hide my tears so she wouldn’t misunderstand and think I was upset. I can’t describe how that felt, to know that somewhere inside of Rachel, her spirit is responding again to the Lord and some door that has been shut for so long is beginning to open up again. I know that on this side of heaven, I will probably never know how Rachel sees God or how her spirit connects with Him but I’m so glad to at least get to stand next to her and watch the sweet mystery that is Rachel’s walk with God.
REAL Heroes ~
This is the beautiful Bailey who runs around our church, hugging so many people on Sundays that I can’t even count them all. She doesn’t need words to express her joy or her love for people. Her mom Joyce is the person who has patiently and persistently encouraged me to look into horse therapy. Bailey started out horse therapy with Bretta, who Rachel will soon begin to spend time with on a weekly basis. Now Bailey has graduated to MAGNUS!
This is Magnus. He is the large, male at the barn. I have a hard time imagining little Bailey on top of this big horse, but soon we will see for ourselves.
Our world chooses heroes based on money, beauty, talent and celebrity. I looked up the definition for “hero” and this is what I found: a noble, courageous person, a champion, a shining example. Two of my heroes, who are REAL heroes, are Bailey’s mom, Joyce and Kate the Brave’s mom, Linda. Today I watched Bailey’s mom trying to keep up with her as she ran from person to person giving hugs and I noticed a slight limp from Joyce. I often forget when I see Joyce that she has M.S. She recently needed her cane but she was at church today, bravely following Bailey without that helpful tool. When you talk to Joyce she literally sparkles with joy. You have to look really hard to see the glimpses of fatigue or pain that flit across her face, because in seconds they are gone and back is that beautiful face of joy and care for other people. It is unfathomable how I could ever care for Rachel if I had constant fatigue or pain in my body. Yet Joyce does it with such joy and endurance, never bringing attention to herself.
This is Kate’s mom Linda. She too advocates for her daughter tenaciously, loves her family selflessly and keeps up with the ever moving, always talking Kate. She has Rheumatoid Arthritis and suffers a great deal with fatigue and pain. Honestly at times I want to say “Why God? This seems so unfair.” Then I’m reminded how Joyce and Linda are the best examples of 2 Corinthians 12:9 that I know. “My grace is sufficient for you, for power is perfected in weakness.” I wonder if having something that is difficult all the time, knowing it will never get better and you choose to not get angry or bitter but you choose to trust God to give you strength for each moment of every day, that you find an intimate place with the Lord that becomes your strength. I admire these two women so much! While the world reveres celebrities and sports figures, I know who the real heroes are and two of them are my friends!!
Here We Go Again ~
Back in the Bullwinkles and Chuck E Cheese days!
There is an interesting phenomena when you have a child with special needs. With Ashley and Jordan, there were other people who spoke into our lives to help us raise them, doctors, family members, good friends and teachers, but there was always a sense that we were equipped to parent them. With Rachel that is not the case. All of her life there have been professionals who peer in and correct and guide us according to their expertise. I can’t even count how many people that would be. At first there were four specialists a year telling us what to do, speech therapists, occupational therapists, physical therapists and the list goes on. For the most part there was some really good input. The hardest part of that is feeling like you have an alien in your family that you really can’t understand and only the experts know what’s best for her. For years I felt like we lived under a microscope and everyone was looking in and judging the way we were doing things. Eventually I got over that and matured enough to know to just smile, nod my head, take notes and then Dave and I would decide what advice to follow. Even though every year when they assessed us, we had to answer for those choices and explain why we didn’t always follow their advice.
Fast forward to yesterday. We spent a couple of hours with a lovely, compassionate woman who is a behavioral counselor that our expert doctor wants us to see. She really is great at what she does, I’m sure, but honestly we do know Rachel. After spending an hour with Rachel alone, she came back to us with a plan to focus on emotions and talk A LOT with her about how she feels. I tried to explain to her how that goes, but I don’t think she heard me. OK here’s an example: A few years ago we got private swimming lessons for Rachel. She refuses to put her face in water and we had hoped that it would help her with that fear. By the end of the 8 classes here is what the instructor “knew” about Rachel. ”She went to Beaverton High School, she loves the Blazers and watches all of their games and that she had lots of cats and dogs at home.” Incidentally those were things that were true of the instructor, but not one of those facts is true of Rachel. Now it’s not that Rachel lies. That’s not it at all. She has this uncanny gift for reading people. She listens to people’s questions, watches their face and answers in a way that she thinks will please them. We worked on this for years before she went silent and we never were able to get her to budge. She cares more about making people happy than expressing her own feelings. So if you ever ask her a question, you can know without a doubt that she just answered you in a way that she thinks you want her to answer. That is Rachel, it’s how she’s wired and how she loves people.
So here we are with a new plan. I smiled, nodded, took notes, then downloaded every app I could find on her ipad that has anything to do with emotions and we’ll press in hard to talk about this with Rachel. If I were a betting woman, I would bet that not too far down the road this counselor is going to get pretty frustrated when she realizes that all the answers she is getting from Rachel are a reflection of herself and what she really wanted Rach to say. Who knows, maybe we’ll stumble across something new or a way to help Rachel express how she feels. I hope so. For now, my money is on Horse Therapy, but we’ll see how this turns out.
Back to See the Doctor ~
It was time for an update appointment with our new doctor who specializes in people with Down Syndrome. Rachel was not happy to see him but she never likes going to the doctor’s. He feels that there is some improvement and wants us to increase Rachel’s medication. I’m never very comfortable with that, but I guess we’ll just take this a step at a time and pray for wisdom as we go. We’re having some trouble getting a sleep apnea test covered so we are still working on that. The doctor has asked us to see a behavioral counselor who specializes in people with special needs so that is the next thing on our list. We meet with her this Friday. By the time we see him next, we will have started Horse Therapy and have been to Estonia to see Jordan. So as we just keep putting one foot in front of the other, we continue to trust the Lord for guidance and grace.
This is Rachel’s stuffed “Bretta.” She goes everywhere with us. Thank you Julie Courson!
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