Learning to Listen ~
Now that things have slowed down a lot, after the wedding and the move, Rachel and I are having lots of time to be together at a slower pace. I’ve finally come to the understanding that even if Rachel never has more words for me, it will be ok. For some reason, not expecting or asking her to give me words for how she’s feeling and what she wants has helped me “hear” her...
The Mother of the Groom ~
This picture feels like about a month ago in some ways. Now that little squirmy, adventurous, happy boy is a grown, married man. Why doesn’t anyone give you advice on how to let go of sons well? I have been surprised by how hard it really is. I guess I’m one of those moms who holds on too long, and too tightly to her children. I’m so grateful God knows me so well and...
Rachel's Dream Come True Day ~
Rachel has been practicing her whole life to be in a wedding. Well she finally got her wish. She was a beautiful bride’s maid in Jordan and Ellie’s wedding. If you didn’t know her well, you might think she didn’t care very much. I knew it was one of the best days of her life. She was so happy and so proud. For the next three days she would not let go of her flowers...
I love when Rachel is so happy that she just HAS to dance!
Only 10 Days Until the Big Day!
In only 10 days these two will be husband and wife! We are so happily counting the days. They are both amazingly calm and joyful with no conflict that I have seen. They are wisely focusing on the marriage and not just the event of the wedding. I couldn’t be prouder of both of them or more blessed by the relationship they are building. This was one of Ellie’s showers. I loved...
This is the reason I haven’t blogged for so long. We saw this house right before Christmas, and have since, put our house up for sale after cleaning and painting like crazy people, sold our house and moved into this one. This is my dream house. It is spacious and light with no yard work (that’s Dave’s dream) with a green space behind with trees and a creek and plenty of...
Practicing to be a Bridesmaid ~
Rachel is still very quiet and only “connects” with us a few times a week, but once in awhile I get a glimpse into what she is thinking. A few days ago she was practicing holding a pretend bouquet and walking slowly for the wedding. She doesn’t show it but I know she must be very excited for Jordan and Ellie’s wedding. The mask is still a distant...
We’re still working on getting Rach comfortable with the CPAP mask again. She has been really quiet and withdrawn. I was thinking that she might not want to open her presents at Christmas this year, when I passed her room and saw this. Maybe she is more excited for Christmas than it seems!!
Starting Again ~
The horses were all inside today when we got to the barn, because of the weather. They all popped their heads out to greet Rachel. Since it was raining, Shannon had Rachel walk around the arena with Hershey. She stepped back to just watch what would happen. It was so sweet. Rachel was much more comfortable and just walked along, sometimes leading Hershey and sometimes following his lead. ...
Taking Some Steps Backward ~
We were making so many baby steps forward. Slowly Rachel was able to watch a show on TV wearing the mask with the air on and straps in place! I thought we were finally ready to try wearing the mask at night. Last night I put the mask on her even though she fought it a bit. I turned on the air and then laid by her on her bed to try to calm her. I patted her back and prayed, hoping she would...
Finally Some Progress!
Last week I kept plugging in the CPAP machine to get Rachel used to the sound of it. Then I attached the hose and put the air on and put the hose closer and closer to her. She hated it! Having the air blowing on her frustrated her like crazy. It’s even on the very lowest setting that it can go. At the end of last week I was positive we would never get Rachel comfortable with using this...
They Are Engaged! ~
My son Jordan has loved a beautiful young woman named Ellie Courson since he was 15 years old. He even has a journal to prove it. All through the pages of this journal, he poured out his heart to God over and over again about how the dream of his heart was to marry Ellie one day. Well this weekend, he asked her to be his wife and she said yes! We could not be happier! When Jordan was 15 and...
The Kindness of Strangers ~
Look what we just brought home……the long awaited CPAP machine! It’s much smaller than I had imagined. I went to get it on a day when Dave could be home with Rachel so I didn’t have to take her to that office. She really hates it there. I didn’t want her to have a connection in her mind between this machine and that office. When I went into the office I met with...
A little impromptu concert. I love when she imagines out loud.
Getting Bossy ~
We weren’t able to get Rachel to be bossy enough with Magnus to tell him what she wanted him to do. She always panicked and ran from him. Now with Hershey, Rachel is getting a little braver and learning to tell Hershey what she wants. At first he insisted on eating grass, but eventually Rachel got him to follow her for a walk. Shannon is so great at gently leading Rachel and teaching...
Hellooooo Hershey ~
This is Hershey, Shannon’s miniature horse. Rachel has been really nervous around Magnus lately, almost as if she’s going backwards. So Shannon decided to introduce Rachel to Hershey. Rach is so much more comfortable with Hershey’s size. No matter what we do out here it’s a win. Isn’t this just the most beautiful place? If Rachel never rides a horse, it...
Trip to the Pumpkin Patch ~
We were surprised to find a day when we were all available to go to the pumpkin patch together! We had lots of fun. Rachel drove with Jordan and Ellie. She loves having us all together! These are Rachel’s favorite kind of days.
We Love The Fall ~
This is Rachel’s sixth fall in this picture. Fall is such a hopeful time of year. We love everything about the fall. I can’t wait to go visit a pumpkin patch! Soon the holidays will be right around the corner. There are so many amazing smells that float by on the breeze during the fall. Lately it feels like we are getting little breezes that flit by of Rachel coming back to us...
Ready Set Go ~
She’s letting us put it on her with the straps now! It’s time to order the air machine and give it a try! Oh I so hope this works!
Costco Date ~
Jordan is Prince Charming even at Costco. No wonder Rachel is so happy to have him home!
Big Day at our House ~
Rachel got her own REAL phone. Now to learn how to use it!!!
The Rathkey Magic ~
We’ve never left Rachel for very long because of her incontinence. Dave and Ashley and I are the only ones who have ever helped Rachel in the bathroom because it’s not an easy process and often not a pleasant one. Dave and I have always felt comfortable taking turns going to things so that one of us can be with Rachel. Once in a great while we’ll ask Ash to be with Rachel for...
Trip to California ~
We took a week and drove to California to see Dave’s mom and other wonderful Hughes family members. We rented a house in Pacific Grove and the first thing Rachel did was make a “nest” for herself on a little loveseat. She set out her books and crayons and her new frog from Julie Bitler and made herself right at home. It was lots of fun to reconnect with family we...
Still Trying to Get Comfortable with Magnus...
The M & M Game ~
Rachel will do just about anything for M & M’s! So we tried a new game today. I put the mask between us and every time one of us put the mask on our face we got to take some M & M’s from a pile between us. I got her to do it about 6 times! Progress!
Rachel is pretending she’s dancing at a ball.
Little Victories ~
When we started all this, if Rachel saw THE MASK in her room she would turn around and leave her room. Eventually she would stand in the doorway but not come in while I put the mask on Rosey before bed. Then we got her to sit on the bed while we put it on Rosey. Now she is actually touching the mask and helping us put it on and take it off! Woo hoo we’re making progress!
Good Morning Zerbert ~
Rachel LOVES having Jordan home. He tells her good morning with a zerbert. (That’s a very loud and silly kiss.)
Yesterday Ash and I were praying together and Rachel was sitting nearby. Ashley noticed that Rach was listening and she began to pray for Rachel in the sweetest way. She thanked God for how good Rachel is at folding towels and straightening her room, how much she loves horses and pink….and so much more. I peeked for a minute and watched Rachel smile to herself. Those are some of the...
BABY steps ~
Today Shannon had Rachel get on and off the saddle while it was on the ground. Rachel did it so smoothly! Then she had Rach get on it while it was on the mounting block. When it came time to get on the saddle when Magnus was next to the mounting block, Rachel was not so sure. It took some coaxing from Shannon to get her on the saddle again. The next step was to have some of the girls in the...
Plan A & Plan B
This is Rosey, a new friend that has come to live at our house. She has sleep apnea. Plan A is to have THE MASK in plain view all of the time and see if we can get Rachel used to it. We are also going to ask if it comes in pink! Plan B……The doctor set us up with a psychiatrist who specializes in desensitizing people to the CPAP machine. We meet with her Monday. So here we go...
The MASK ~
Today we met with the sleep specialist. She told us Rach has SEVERE sleep apnea. At night most people’s oxygen levels are between 90 and 95 percent. Rachel’s go down to 71 percent. She has many pauses in breathing, some as long as 45 seconds. Sooooo we have two options. We can meet with a team of doctors who would do major facial reconstructive surgery OR we can use a CPAP...
A Trip to Montana ~
Rachel and I flew to Montana to spend a week at the cabin and then drive home with my sister who had been up there for a few weeks. It was so refreshing! Of course the first thing Rachel did was make a “nest” for herself. We spent hours by the river, watching deer and birds, reading books and wiggling our feet in the river. Even though the temperature was often over 100...
Sleep Apnea ~
It turns out we did get enough data to determine that Rachel DOES have sleep apnea. So now we meet with the doctor again to decide how to proceed. She would like Rachel to be on a CPAP machine but I can’t even imagine how Rachel would tolerate that. Maybe there are some other things that can be done. We will see! I’m thankful to have another piece of the puzzle for now.
Rachel meet Magnus ~
We went to the barn today and met Rachel’s new horse, Magnus. He’s Bretta’s son, which seems so sweet. He is a beautiful, larger and a bit more spirited horse than Bretta, so it will take some time for Rachel to get comfortable with him. Shannon is working hard to help Rachel be brave and get comfortable. Rachel got her boot up on the saddle. So I would say that is a...
Good News and Bad News ~
The good news is that after two nights of barely any sleep we finally got Rachel to wear the sleep apnea test equipment for about 3 hours. I’m not sure why it was so frightening for her. Maybe it brought back memories of too many hospital visits. So Monday we turn it in and pray like crazy that they get enough data to make an accurate diagnosis. That is not an experience I want to...
Rachel’s longest dribble!!
Rachel worshipping on Sunday ~
Continuing On ~
We are continuing to visit Bretta every week, hoping that Rachel will be able to push past her fear and sit on her again. Even small things like moving her hand from one side of the saddle to the other side have to be practiced over and over to feel comfortable for her. Thankfully Shannon continues to be the most patient person on the planet. She keeps cheering Rach on. There are some...
Two New Adventures ~
Dave is taking Rachel to a new basketball league that just started for adults with special needs. This week we got lots of smiles and much more “connectedness” as she tried to dribble and shoot the ball into a garbage can. I’m not sure if it’s basketball she likes or if it’s getting that concentrated attention and time with Dave. If I were to make a guess,...
First Week of Summer ~
We started out our first week of summer with Bretta. Rachel keeps taking baby steps to become more comfortable at trying to lead Bretta instead of being led by her. Shannon is working hard at little by little getting Rachel to get on Bretta. It’s sometimes two steps forward and one step back but that’s ok. We aren’t in any rush. Shannon reminds Rachel to smile,...
A Week in Rachel's Life ~
Besides Horse Therapy, we are trying lots of things to help Rachel connect and to just make her life happy. She loves gymnastics with our good friend Courtney Covington who generously gives her all for Rachel and her two friends. She is constantly trying new things to stretch our girls and to keep them learning. 4-H has been fun, and another social activity for Rachel to be with friends. They...
Lots of Baby Steps ~
Rachel was sick last week so we missed Horse Therapy. This week she sat on Bretta twice and didn’t shake quite so much. Her face tells it all. This is Shannon congratulating Rachel on being so brave. If it takes forever, Shannon insists that Rachel has to choose to get on Bretta and not be pushed. I like that. Last week we saw a few different doctors to figure out how to go forward....
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...
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...
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...
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...
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...
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....