Us mamas, when our kids are young we often have this dread of them growing up. We try to savor every moment, cause we’ve been told (and it’s true!) we’ll blink and our kids will be grown. (I’m not there yet with my kid with Down syndrome, so I’m talking about my other 2 kids in this post.)
We know that’s going to be so hard for us, so throughout our kids’ childhoods, there are bittersweet moments ripe with that knowledge. And it’s true too, it IS hard when our kids grow up. The transition period when a child leaves home is just hard.
BUT, I’m here to tell you that are is also great joy to look forward to when your kids grow up!
Mama still in the trenches, ponder for a moment how sweet it will be if one day you get to enjoy a sweet friendship with your adult children. And, it’s different with each kid, but hopefully you’ll have some shared interests.
You’ve spent many years putting their needs ahead of yours. As an adult, they now have a better appreciation for what you’ve been up to all these years.
I remember talking to a friend a couple of years back when Jordan was engaged. At the time, this friend had a married daughter and one grandchild. She assured me that there were sweet times ahead, that after an adjustment period I had good things to look forward to. She wasn’t wrong; and I’m here to encourage you as she did me.
When our kids are little, a lot of our time together is caretaking or doing things they find enjoyable. I enjoyed my kids more and more as they got older because they enjoyed more of the things that I did.
Can I just say that I mostly didn’t like kid movies, even some of the Disney ones? It was sometimes torture, thinking of all the things I needed to do as I sat between them watching a movie. As my kids got older I have really liked that we could enjoy the same tv shows and movies.
I LOVE that I can sit and talk with my adult children, have coffee outside with them, float leisurely in the pool talking or not (just relaxing, no antics required!), take a walk with them, and not have to spank or threaten anyone while eating dinner out. Go shopping for clothes (no whining) or plant shopping. You know, the things you like to do with your friends.
Those people you gave yourself up for daily, teaching and training and taking care of for years have turned out to be pretty good company.
Recently, I was sitting watching tv and suddenly got a wild hair to jump up and run to a local nursery. I called my daughter spontaneously to see if she would want to join me. I had just finished watching a movie and in the movie there was a scene with a pretty window and plants in it that just set me off. I had known I wanted to go soon and that scene made me decide it needed to be today. Does that ever happen to you?
I knew she too had been wanting to find some plants for her front yard and we had said that we should go together soon. I love that she’s getting to be more and more like her mama in this way. Gives me hope we’ll be able to enjoy this together for a long time to come.
Before I could leave, I had to clean up a Bad Buddy (our rambunctious and curious kitten) mess. Buddy has reached a new level of skill and destruction. He’s never gotten on the mantle before, but I saw him, and couldn’t get there quickly enough before he knocked off a pretty white glass candle off the mantle. This required me to chase him around the room a good minute with the spray bottle hoping it would deter him from thinking the mantle was a good idea.
We arrived at the nursery with two hours before closing time and we stayed till the last minute. We enjoyed leisurely looking, sometimes together, sometimes separately. I was able to tell Jordan about some of the plants I knew about. There was a fella working there who was extremely knowledgeable about shrubs, fruit trees, and organic gardening. You name it, he knew about it. He was a walking almanac! We had questions and he had answers, for about an hour 🙂
It was such a relaxing time, being with one of my favorite people doing one of my favorite things. There’s not much I enjoy more than a spring day leisurely lolligagging at a nursery.
Later that same day the kids had asked us to all eat dinner together. It had been a few weeks since Jay’s birthday. He wasn’t suspicious since his birthday had passed. Evan and Jordan had been scheming together for weeks. They had bought their dad a gun they knew he wanted, and Evan wanted to present it to him in the same place and in the same way he had been given his first hatchet on his 12th birthday.
We had been eating dinner at Things and Wings, (somewhere we went to eat a lot) and Daddy had slid the hatchet (had a leather cover on the blade) under the edge of Evan’s leg. It took a minute before he felt it and looked down. He was thrilled with the gift and the fun way we surprised him.
Now, some 9 years later we sat squished, 6 of us in a large booth. It took some sneaky work getting Jay to go along with us all in the crowded booth. It wouldn’t work if we sat at a table. I pictured the gun slipping off the chair and folks freaking out. Evan sat between Jay and me and slowly slid the gun under the edge of Jay’s leg so he would reach down. Jay was really surprised and excited and of course said the kids shouldn’t have spent that much money.
It was really sweet that, obviously, the hatchet surprise was something Evan thought back fondly on since he wanted to create the same experience for his dad. It was awfully sweet too that the kids bought something for Jay that he wouldn’t buy for himself, at least not anytime soon.
Some weekends when Evan is home, although he sleeps here we might not see him much. This Sunday, Evan was around the house most of the day and preparing for his work week. He grilled enough chicken to take for his lunch for several days and studied for the paper portion of a crane test (learning to operate a crane).
I had asked if he wanted to watch a movie and he had said he didn’t really have time. I decided to put the movie on anyway while I folded laundry and matched socks. He couldn’t help it, he got interested in it too. Maybe that’s cause the movie had Jennifer Anniston in it 🙂 The movie was Mother’s Day, and although it is a chick flick we had a good time laughing together watching it.
This particular weekend I had time individually with each of my adult kids and we had time together as a family. That isn’t something that happens all the time and the joy of the weekend inspired this post to encourage those of you that aren’t there yet.
It IS hard when I watch Evan drive out of the driveway after a weekend at home. Often, I’ve been fine all week and then my heart aches fresh when he pulls out. When he knows I need it, he lets me have the long hugs and extra kisses.
Sometimes it’s still the same when I hug Jordan at the end of a good time together and we go to separate homes. I am enjoying more than words can express though how fun it is to have a daughter for a friend.
There are, of course, no guarantees with parenting. There is no certainty it will end up this way. There’s a good chance though, after all those years of parenting you’ll get the sweet gift of enjoying their friendship as adults. It’s the best! Look forward to it.
This is the first time someone Jessie really cares about and feels close to has died since she’s matured enough to have any understanding of death. (Although my brother died recently she didn’t know him well.)
Once a month, Jessie has a fun night at a local church (Calvary Baptist Church) that provides a program for kids with special needs. Jessie really enjoys it and looks forward to it. Jay and I look forward to getting a date night while knowing Jessie is in good hands. This is where Jessie met Corey. When I picked Jessie up that evening her face was red and she was hot from playing basketball for close to an hour. That isn’t like Jessie at all!
Corey was the reason. He had played basketball with her for nearly an hour and talked to her the whole time. Taking the time to talk to Jessie and listen to her is her love language. After this night, Corey became the topic of conversation in our home for a long time to come. When he was well enough, he would be there every month when Jessie attended on Thursday nights. From the first night, Jessie couldn’t stop talking about Corey.
I later learned that Corey had cystic fibrosis and had been sick throughout much of his life and he’d had a double lung transplant. When he was well though, he volunteered at his church.
Jessie friend requested him on facebook and would send him facebook messages. Then she got his phone number. (picture intense pain emoji face here ) Jessie talked and talked and talked about Corey. She developed quite a crush on him.
For many months I felt like I continually said, “You’re too young to have a boyfriend. He’s too old for you. He’s your friend.” Eventually, we got to a good place where she enjoyed his friendship and could appreciate and be happy with it for what it was.
When my oldest daughter, Jordan, got married, she and her husband started attending the same church as Corey. Her husband Josh played softball with the church and we would sit with Corey at all the softball games. It was at softball games that we all got to know him a little better. He was someone that our whole family came to know and care about because of his initial kindness toward our Jessie.
When he was sick in the hospital on two different occasions for several months each time, we prayed for him regularly. One of those those times he had ANOTHER double lung transplant. He was one sick fella for a long time. I worried at times how we would handle explaining it to Jessie if he died and was concerned for how sad I knew she would be.
And now that time is here.
Because this situation was personal to Jessie, and she really cared about what happened to Corey, it gave me the opportunity to explain spiritual truths to her when she was really listening. I used the simplest terms I could think of.
I told Jessie that Corey had died and asked if she knew what that meant and she said no. I explained that when people die they aren’t here with us, they go somewhere else and we won’t see them anymore. She had already started to cry and the crying got more intense. I told her they either go somewhere really good to be with God if they love God or they go somewhere bad. (Although I didn’t elaborate on the somewhere bad, Jessie understands enough that I felt it was important for her to know not everyone goes to heaven.) I reminded Jessie that we knew Corey loved God, so he was in heaven with God and would be with him forever.
Jessie knew that Corey had been in the hospital for several months. She knew he had a hard time breathing. I tried to find an example she could relate to, like when she was swimming real hard and felt she couldn’t catch her breath. I explained to her Corey had been feeling like that for a long time and he won’t ever feel that way again.
Jessie is genuinely happy for Corey that he won’t ever feel bad anymore and equally sad that she won’t see him.
For the two days since we had this talk, during the day she has mentioned Corey, and she has wanted to tell a couple of people that her friend died. I’ve seen for years now that like the rest of us, Jessie thinks things over at the end of the day as she gets ready to go sleep. She hasn’t shown a lot of sadness during the day but at bedtime when she’s tired she feels more emotional and has cried.
Jessie doesn’t understand death, or heaven, or God at the same level another 16 year old would but I think she understands enough to be of comfort to her. Maybe she will or won’t come to understand with greater clarity later. All people with Down syndrome aren’t the same, of course, so another might be able to understand more than Jessie and some might understand less.
Jessie understands these simple truths:
She knows she won’t see Corey anymore and that she will miss him. I think she really does understand she won’t ever see him again (before heaven).
She knows that because Corey loved God he will get to be with him forever. She knows that to be a good thing.
She knows that things will only ever be good for Corey from now on. He won’t struggle with breathing anymore.
Although these truths she understands are very simple, sometimes I envy her simple way of looking at things.
The last several days I’ve seen a lot of love expressed toward Corey on facebook after his passing. Clearly, he was a very special young man loved by many. When we had visited our our daughter’s church (Corey’s too) I told the pastor our Jessie had a crush on Corey. The pastor said, “We all have a crush on Corey!” and it seems to be true in such a sweet way.
Our family is thankful for the friendship Jessie had with Corey. We are glad for the short time we got to know him. Corey was the first person I ever played on Words With Friends. It’s a simple thing, but I’ll miss playing him and him beating me.
Food choices and healthy choices in general are something Jessie and I talk about regularly now. Although I haven’t seen drastic changes in food choices, I see that Jessie is understanding better what food choices are healthier than others and which contain a lot of sugar. She commented the other day that pizza was carbs 🙂
On this coop day, we learned some simple exercises and made healthy smoothies. They also wrote their smoothie recipe on a note card so they could make it again at home. They thought it was all fun, not too much like school work at all 🙂
First, Heather talked to the students briefly about muscles and used this book, Me and My Body, and showed them a picture of muscles on the inside of their body. She talked very simply about “resistance” and how that works your muscles.
Heather helping Joshua keep good form. He got the hang of it quick.
Then he was able to do the exercise perfectly by himself.
Heather demonstrated the next exercise for Joshua.
He thought this was pretty fun.
I took some videos that are so stinkin’ cute but wasn’t able to load them. Evidently, the best way is to load them to YouTube first and I haven’t learned all that yet. Maybe I will be able to add them later, I had so hoped I would be able to share them.
After they did the exercises Heather had for them, they did a short routine with this super cool video by DSA (Down Syndrome Alabama). This video is just under 2 minutes and demonstrates a fun, brief aerobic workout adapted for all fitness levels, including someone remaining seated.
Ashley was recovering from a recent surgery so she didn’t participate in the exercises today. Jessie, well, she just wanted to do the routine seated.
Heather had a great variety of smoothie ingredients. Several types of fruit, almond milk and yogurt, peanut butter, kale, flax seed, and honey to sweeten.
Jessie’s favorite part for sure was the smoothies! Each person was able to choose their ingredients. Then Heather wrote the recipe down on the white board and each student copied it onto their own 3 x 5 card so they could make the same smoothie recipe again at home. Jessie doesn’t like a wide variety of fruit and is really picky about texture, so she kept her recipe pretty simple. Some of the others had a wider variety.
Jessie enjoyed getting to mostly make the smoothie herself.
Jessie knew she liked strawberries. She did decide to add raspberries, so she branched out a tiny bit. She also had never had almond milk or used honey as a sweetener. She really liked the smoothies (she had tried some before that she didn’t like) and was eager for us to buy the ingredients to make them again at home.
We enjoyed this coop day so much and talked about finding a way to repeat the exercises on other coop days. This day we had borrowed Heather’s resistance bands and weights and everyone took turns. We said we might all get our own equipment so we could all do the exercises at the same time. I definitely plan to get weights and bands for Jessie and me so we can do some simple exercises at home.
In case like me, you didn’t know, the resistance bands have different amounts of resistance. To start easy, I will buy bands with light resistance, instead of choosing by favorite color.
My hope is that sharing my progress, slow but steady, while using very little money, will encourage you in your own goals for your home. Sharing my progress helps keep me motivated too!
I wrote that I wanted to declutter and organize my home this year, but Jay and I have some hefty goals for getting the outside of our home in shape too, so I’m including that progress in my updates. Our backyard has something in common with Sanford and Son if you know who that is.
In documenting my progress, each step alone is small, but it all adds up! Don’t be discouraged if your changes seem small at first; it’s progress!
I’ve often been discouraged by the Pinterest worthy organization shared online, in magazines, or on tv, because to achieve beautiful organization they had to spend more than I can afford to. What I will share is not like that.
It helps with motivation if you have a friend to share your projects and progress with. I have a couple of friends that we regularly share what we’re working on around our homes. I find that so helpful.
I would love for you to comment here and share pictures about YOUR projects and progress! We can encourage and help each other!
Ok, February progress:
Reorganized Spice Cabinet
I reorganized my spice cabinet. I recently put all my “regular” (as in one ingredient) spices in alphabetical order. Those are on the left side of the bottom shelf. Before they were alphabetical, I had accumulated some duplicates because I couldn’t easily tell what I had. I kept the freshest and threw away duplicates. On the right side: mixes, like taco seasoning, fajita seasoning etc.
The ones too y’all to fit on the 3 tiered spice shelf (I purposely don’t buy most of them this big!) sit on the shelf above. Salt and pepper refills and baking soda and powder etc on the lazy susan.
Top shelf is for canning jars etc and I didn’t have to change anything there.
Went Through and Reorganized my Dresser
This was quick and easy because there wasn’t much to get rid of. But I did add a few things to the donation box and re-fold everything neatly.
Umm, you can see on top of the dresser there is still decluttering to do. This is in the back of my closet.
You can see the drawers aren’t over stuffed. They aren’t even full. This makes me really happy! A lot of my clothes hang up because we have more hanging space but I’ve also gotten so much better at not keeping things I don’t wear and I don’t buy more than I need.
Started Organizing My Earrings
Y’all, I love earrings. A friend of mine said she had never seen so many. The box with dividers I’ve been storing them in won’t hold them all so I’ve started moving some to another system where I can see them better. I bought the hanging storage bag at Ross or TJ Maxx for $4.99. I noticed afterward though that they have some on Amazon with pockets on both sides.
You can see I’ve still got work to do here 😊. Divided jewelry box on the left still has to be gone through. I will keep most of them and keep the ones with a post in the divided box. In my defense; they’re small and don’t take up much space!
I do love some ear-rangs.
Collected A Box of Donations
I keep a box at all times for donations and over the course of the last month have filled it with one or two items here and there. It’s added up to a full box in a month.
I’m including in this month’s progress some outdoor projects. Although some of the work would be considered routine maintenance, much of it isn’t. Jay and I are taking advantage of our beautiful spring- like perfect yard work weather before it gets blazing hot, which will happen in a flash.
In defense of the before outdoor pictures–as well as some that are excuses, we’ve had legitimate issues that have caused us to get so far behind. A wedding, plantar fasciitis (me), sciatic pain (me) bad knee (Jay) lack of well-working equipment or not having the things we need (like a chainsaw) and then knee replacement and recovery for Jay, in addition to some hoarder-ish tendencies….things around here got pretty out of shape outside.
On President’s day weekend, Jay and I worked on Saturday and Monday on some outdoor project goals. There is still much to be done, but we accomplished a lot. We had the sore muscles to prove it. We were popping Tylenol, Ibuprofen and using Icy Hot for a couple of days after 🙂
The normal stuff: We trimmed bushes (still more to do there), he chainsawed down some small trees that had appeared in our shrubs and grew tall when we didn’t own a chainsaw.
I thought I had taken a before picture. This oleander (one that looks like sticks now) was as tall as the house when we got started. We didn’t get to the other bushes yet, our gas powered hedge trimmers wouldn’t work. So discouraging when you have equipment failures that slow progress which always seems to happen. Jay is working on the hedge trimmers, but for today’s progress he used limb loppers and the chain saw to tame this beast of an oleander. They’re so pretty when we see them at the beach, but they grow so fast and it’s a lot of work to keep them under control. Jay wants to pull them up. I’m holding him off for now.
The outside the norm stuff: I didn’t take a before pic, but you wouldn’t have been able to tell really anyway because of the leaves. Our privacy fence had fallen down. There were sections of fence on the ground. Some of them were heavy, and still attached to posts. Others were rotten so they fell apart and had to be removed in smaller pieces. A tree from our neighbor’s yard had fallen into ours and the owner (rents the house but it’s currently empty) had not taken care of it. Jay and Evan had cut up and removed some of the tree and left behind some we might use as fire wood. It isn’t “good” wood and we don’t have a way to stack/store it well so we hauled it to the street rather than cut grass around it all summer.
After two days of serious work, we had a huge pile by the street for pick up.
This was a serious workout and it felt so good to get these things done.
Although I always wish the progress was faster, we’ve made steps in the right direction this month and I’m going to be content with that.
I do hope you’ll share your goals, projects and pictures so that we can celebrate and encourage one another!
My two adult kids had given me birthday money for a beautiful condo at Panama City Beach for 2 nights. When I opened the card with the money in it, my son said, “Mom, you can’t use this for anything but the beach. Not for groceries. Not for a bill. Not for anything else, just for the beach.”
Jessie, our youngest who has Down syndrome, really doesn’t like the beach so we rarely ever go. Before kids, that was our happy place for sure. When we couldn’t stay overnight we made lots of spontaneous day trips. When our oldest two were little, it was a lot more work, but we still managed to go some and they enjoyed it too. Once Jessie came along, because of her intolerance of heat and how hard it is for her to walk in the sand, we’ve pretty much given it up.
Both my big kids know how much I love the beach. Of all the places I can think of, the beach is the most peaceful and relaxing to me. Hearing the waves seems to almost instantly bring a feeling of peace and calmness.
I always feel close to God when I’m outdoors, and especially at the beach. It is such a magnificent display of His creativity and power.
My husband reminded me that it had been NINE YEARS since we went away without kids. Even though it has been 9 years, I still remember how much we enjoyed that last time we got away. I still remember that we came home feeling so much more connected as a couple. For a long time after that it served as a sweet reminder of , “Yeah, that’s kind of the people we were before kids.” It’s good to remember that and yet sometimes hard when you’re in the trenches every day.
I found it hard to leave any of my kids when they were young, and that feeling has lasted longer with Jessie than the other two. In the 23 years since we’ve been parents, other than when we were at the hospital having a kid, I think this may be only the 3rd time we’ve been away from all of them at the same time. When I had a c-section with Jessie, the last night we spent in the hospital, Jordan (7) and Evan (5) spent the night there with us. Their last living grandparent died when Jessie was 7. We didn’t have grandparents to keep them, and when there are 3 of them, well, there aren’t a lot of takers for that kind of babysitting.
This trip to the beach, Jessie was really excited to spend the weekend with her sister and brother in law, both of whom she completely adores. Jordan took Jessie to a Valentine Dance on Friday, and to church then out to lunch at O’Charley’s on Sunday. This was the first time she had spent the night at Jordan’s since they bought their house, so I know next time (and there will be a next time!) she will feel even more comfortable spending the night.
Jessie really enjoys time with Jordan without me, because without meaning to, Jordan and I tend to monopolize the conversation a lot of the time. When Jordan was giving me the weekend highlights, she said Jessie had expressed to her and Josh how much she appreciated them “being so kind to her”. Where does she get these grown up things?!
Jessie texted and we facetimed (brief each time) throughout the weekend because Jessie just likes to stay in touch and know what we’re doing. We didn’t mind. I could hear in her voice each time that she was enjoying her time too.
We had no explicit plans for what we would do once we arrived at the beach. When we talked about it in advance, since rain was on the forecast for the whole weekend, we thought we might want to find some shopping or something else to do. Maybe even go to a movie. We didn’t do any of that.
The first moment that we stepped out onto the balcony looking at the ocean and listening to the waves, it was like Jay and I let out this huge exhale. We had known we needed a break and some time together, but I don’t think we had realized just how much.
After we got our stuff unloaded we went in search of a late supper. See later in post for details on all the neat places we found over the weekend. When we got back, it was getting late but we had never stayed at this condo before so we just wanted to take a look around. We met the nicest couple while we were out.
As we passed by the hot tub, an older gentleman asked if we would turn the timer on for them another 15 minutes. I don’t know if we ever introduced ourselves or learned their names, but we enjoyed chatting with him and his wife for a good few minutes. We learned that they had raised 4 kids and had 10 grandkids. For the last 4 years since they had retired, they came to this condo at Panama City Beach right after Christmas and stayed for 2 months. Wow. #lifegoals. He made sure we understood that they had only been married to each other. They have friends with a blended family that have 15 grandchildren between them. He was proud to let us know all 10 of those grand babies come from just the 2 of them and their 4 kids. They were here all the way from Manitoba Canada.
All day Saturday and all day Sunday, with the exception of when we went out to eat and get a few groceries, I sat on the balcony, listening to the loud and peaceful roar of the waves. The sound of the waves is medicinal, truly. It was a little cool and windy so I stayed cozy wrapped up in a soft blanket. We were on the 6th floor, just high enough to have a good view without being so high as to feel too far from the beach. When I wasn’t reading or watching the waves I enjoyed people watching.
For supper Saturday night, I marinated and pan fried a steak (it was raining so we couldn’t grill) and baked sweet potatoes to go with salad I had brought from home. We ate and went right back to the waves.
Only when it stormed did I come inside and then we watched tv together. While it stormed, Jay and I watched Golden Girls and then a show about building log cabins that was really quite hilarious. How is a show about building log cabins hilarious, you ask? The owner of the company and several of the workers kept talking about how lazy one of the workers was until he quit. His laziness, they speculated, had something to do with his recreational activities that had also cost him his driver’s license. Then, they decided that although he was lazy they still needed him so they apologized and took him back. And, oh yeah, the bosses ex-wife was now married to one of his best employees.
Think, As the World Turns meets Log Cabin Builders. They were acting like a bunch of catty high school girls talking behind each others back and then making up. They did amazing work as log cabin builders and the combination of that with the soap opera work environment made for good entertainment. It really was quite entertaining on multiple levels.
Sunday morning it was so foggy you couldn’t see very far out into the ocean. I don’t know that I’ve ever seen the beach quite so foggy as that. A little while later it was back to normal. I enjoy an ocean view though no matter what the weather is.
We got in a short walk Sunday morning before it rained and then it rained the rest of the all day. Even though it rained most of the time we were at the beach, I don’t think there was one thing that could have made our beach trip a bit better. It made us rest and rest was what we needed most.
When our oldest kids were young, at some point each summer we would go to the beach with my mother in law. She would sit on the balcony and we would always encourage her to come down with us to the beach or pool, feeling like she was missing out on the beach by being on the balcony. But this trip I got it; I really enjoyed sitting, just resting, a lot of that time alone.
Some of the time Jay was inside watching tv. That’s more restful to him than it is for me. We enjoyed our time together tremendously, but we also felt comfortable to do what we each wanted to separately some of the time.
Mid afternoon we headed out to find something to eat. We ended up practically across the street from the condo at Hammerhead Fred’s. If it hadn’t been raining, it was so close we could have walked. We might not enjoy this place during peak season, but on this off season day it was quiet and not very busy and the food was delicious.
When I’m at home, I always feel the call of undone things. Even if I don’t answer the call, I feel the weight of them. While we were at the beach there were no undone things. Nothing else I needed to be doing, rest was the plan. I can only rest this completely when I’m away from home.
I love being at home, and I mostly don’t mind that we can’t afford to travel often. But this trip reminded me just how good it is to get away. Away from our responsibilities of home and together just as a couple.
I knew it would be good to get a break but it wasn’t really until we were there and I relaxed so completely that I realized just how much we both had needed it. We operated solely on our own agenda. We ate when we wanted to. Slept when we wanted to. Drank extra coffee. Read, prayed, sat completely still for hours at a time. Nobody called my name, interrupting my reading or prayer. I wiped no-one’s butt but my own. Sorry if that’s TMI, but that was one of the highlights of my weekend.
Jay said when we got home that it was good to be home. He read my face and could see I hadn’t been as ready to come back yet. I hope we won’t wait nearly so long to do this again. It was good for us in every way.
When I think back on it, I can picture in my mind the exact view and the way the waves sounded. I’m going to hold onto those sweet memories we made, both as a reminder of a good time and incentive to not let so much time go by before we go away together again.
I came back feeling the most rested I can remember being in a very long time. Physically, emotionally, spiritually.
We’ve had a good week since we’ve been back and it was so good to start the week feeling so rested. I’ve prepared Jay though, that since we’re nicely rested, this upcoming long weekend I have plans for us to accomplish a lot of things around the house. Real life 🙂
Till next week,
For Those of You That Visit Panama City Beach: The Places We Ate and the Stories that Go With Them
Surfside Shrimp Co. (on Thomas Drive)
Friday night as we tossed around options for eating a late supper, I really wanted some raw oysters. When I think of the beach, I think fresh seafood. Not too far from our condo on Thomas Drive, we came across Surfside Shrimp Co., a market where they sell seafood, serve steamed seafood, and have an oyster bar.
There was only 1 table to sit at other than the bar. We were surprised by that initially, and pondered going somewhere else, but decided to stay. Then when we realized they only had oysters and steamed seafood and no burgers, etc, Jay and I had to negotiate. He doesn’t love oysters the way I do; he can take ’em or leave ’em most of the time. Not much negotiating really, he was super sweet to do anything I wanted to do all weekend. It ended up being such an enjoyable time and the oysters were SO delicious I’m glad we decided to stay.
Since Jay doesn’t love oysters, we thought he could have a beer while I ate oysters then we would go to Waffle House for him and I would drink coffee while he ate. He actually ended up enjoying a few oysters too and then we drove through Wendy’s to get him a burger on the way back to the condo. We were telling our waitress how the oysters were so much better than some we had a few weeks ago in our hometown. We couldn’t believe how much difference there was, how good they were.
The owner came over and and explained that the oysters from Apalachicola (the place we usually hear most oysters come from) didn’t have good oysters right now because of storms. These were from Cedar Key FL. They were THE best oysters we’d had in a very long time. “Clean” and “fresh” tasting were 2 words Jay used to describe them. They were also huge and good and salty. Perfection.
When we’re out of town and not feeling in any hurry we enjoy talking to people we meet along the way. Y’all know I like to know everyone’s story.
We enjoyed a conversation with Frank, that owns Surfside. As we talked we learned he was from New York. I asked him how he ended up so far south from New York. He told us a little of the history getting from NY to FL and said the main reason was…he hated New Yorker’s! We busted out laughing. I don’t know why, but that just struck our funny bone. A New Yorker that hates New Yorkers. He told us that he had worked in a lot of hotels before he ended up in Panama City. Evidently, a lot of New Yorkers worked in this one hotel, because he said the hotel put up a sign that said, “We don’t care how you did it in New York.”
We very much enjoyed our meal and visit at Surfside Shrimp. Co. From the sweet high school aged girl who took our order, the great oysters and our enjoyable chat with Frank, this is a place we will want to visit again.
FYI, they have beer and soft drinks but no tea or diet drinks. We were ok with that on this visit but good to know.
On Saturday, we ventured out to eat and then a trip to Walmart. We were in search of some place locally owned again, preferring not to eat at a chain restaurant. Well, we ended up at a chain, but we didn’t know it at the time. Even so, Shane’s was a great choice, we were glad we ended up there.
The pictures we saw of their hamburgers on the windows looked pretty amazing. The pictures always get us, don’t they? We asked the sweet young lady at the counter if she had any recommendations and asked about the burgers. She said the burgers were made fresh when you order so they take about 20 minutes. We each ordered their Cowboy burger which comes with little fried onion rings on it. I had mine all the way. Ya’ll, when you order a burger, they rarely ever look the picture. These actually did! Right down to the pretty and curly edged leaf lettuce. The burgers were amazing. Best burger we’ve had in a good while.
While we were in Shane’s there was a young family across from us with 3 little ones. An infant, a toddler and the oldest was a little boy no older than 5, my guess would be 4. I enjoyed watching him; he was so cute. He was holding a fork straight upright in front of his face eating what appeared to be a chicken nugget. I heard him ask, “Why Mommy?” a few times. For some reason, ever since Evan has made it through those young years I have enjoyed watching little boys. Little boys are a mess and I find them so fascinating….as long as they go home with their mamas 🙂
A few days later when I ate at Shane’s Rib Shack in Enterprise, AL, the ribs were equally delicious, flavorful and very tender, the meat pulled easily off the bone with a fork. I might have a little crush on Shane’s Rib Shack. We will definitely be going back.
We went to Hammerhead Fred’s for a late lunch on Sunday. If it were peak season I don’t know that this would have been a place we would choose. With the outdoor bar, the environment might have been louder and a different vibe during the summer, but on this day it was very enjoyable. We shared a wings appetizer first that came with celery and carrots. Then we shared a fried shrimp platter that came with a salad and we had a side of sweet potato tots with it. For this type of place we were surprised at how fresh and good the salad was with a variety of lettuces in it. The meal was delicious. The graffiti everywhere (purposeful) made me feel a little bit like if I stayed too long I would want to clean.
We really enjoyed our weekend so much and all of the places we ate while in PCB were very good. I wanted to give you a description in case you’re visiting Panama City Beach soon you might give one of them a try.
Even as I wrote the post Trusting God Even More in 2018, I was struggling, wrestling with God. Shortly thereafter, without realizing it, I was running from God. Y’all, this wasn’t years or months ago, this was as recently as this week. Maybe you can identify with my struggle. It might be for different reasons, it might look different in your life when you run from God, but many of us do it and don’t even realize it.
Since my brother died recently, I have had many conversations with several family members about others in our family that are no longer with us. It has brought fresh grief that I thought was mostly healed. We’ve also talked about some events that have stirred up a lot of emotion from the past. In addition to grief over missing them, there are some family members that I don’t have perfect peace about if they’re in heaven.
It’s just all felt so heavy some days. Even when I wasn’t purposely thinking about any of those things. It all just weighed on me with a feeling of heaviness.
Even praying about the sadness or anxiety has been painful and I’ve just wanted to escape feeling so much.
I didn’t mean to, but in an effort to escape thinking about these things, I subconsciously kept myself from having any idle time in my mind to think about anything.
Not too long before this, I had been chugging along, working toward my goal of reading the whole Bible through. I was using the Bible in a year plan, but had already seen it was going to take me a little longer and I was ok with that. Some days my Bible and prayer time began to feel heavy and some of the Old Testament reading was hard to think about. I didn’t mean to, but I began to slack off and not make time for it. Before I knew it, I was hardly reading my Bible at all.
One day I’m walking closely with God and the next thing I know I’m running the other direction.
I shared earlier that in my own life, God has allowed some pretty tragic events. Even though I can look back and see how He brings good from every little thing, sometimes I still feel anxious or fearful about the future in a way that I wish I didn’t.
How I’ve dealt with this fear has been different at every stage of life. When my kids were younger, and raising them took all I could think about or accomplish in a day, I didn’t live in a state of anxiety. Although I have struggled with fear for a long time, overall, my position was a feeling of confidence that no matter what God would bring me through.
I don’t know about you, but sometimes God scares the daylights out of me.
I never hear other Christians say that. I can’t be the only one that feels that way? I mean, have you ever read the Old Testament? Sometimes the way God works and the things he allows are outside of my human ability to understand. When I think on Old Testament events or ponder sickness and death and tragedies that we currently hear about on a daily basis, it’s just overwhelming some days.
My house is quieter now and that allows for a more idle mind. Although I really do think that’s part of it, I also feel sure there are hormones affecting my state of mind in this menopausal phase of life. Whatever the cause, I’m ready to be out from under this feeling! As a means of avoiding negative thoughts, fears, any feeling of heaviness, I’ve recently gotten out of balance with activities that are usually a good thing for me.
What it looks like when you run from God might be different, but I have learned to recognize what it looks like for me. When I’m running from intimacy with God I tend to never let my mind be idle. I will listen to books, watch tv, phone friends…..keep my MIND BUSY AT ALL TIMES. None of these things are bad things, in fact, often they’re good things, I just sometimes get them out of proportion.
I love listening to audio books or podcasts while I do housework. And I’m so glad I have those things to help keep me motivated when I’m working. I lack the energy of my youth and it helps keep me going longer to have something to listen to.
When I was younger in my faith and would pull away from God it would look different. I’ve shared before that I had some serious doubts about God at one time.
I no longer ever doubt God’s real-ness. I don’t doubt his goodness. I don’t doubt his ability to do any and all things. I never doubt his love for me. I’m certain He is all-knowing, wise, and on my side. When I pull away, I never lose my admiration, my awe of Him, my love for Him. And yet, I find there are times that I pull back a bit from the intimacy I sometimes share with Him.
WHY, if He is all those good things (and He is!), would I pull away from Him even for a moment?
I’m human. And sometimes so weak. I know I need to lean on His strength, but sometimes even that seems hard. It feels good to give thinking and feeling a rest. But we can’t stay there.
I shared with one of my closest friends that I realized I had been running from God and subconsciously, but purposefully, not allowing myself any time to think painful (or even any heavy) thoughts. The next day when we had lunch, she gave me some index cards that she had written some scriptures on for me. She shared with me the things that God had impressed on her heart (for me) in a fresh way when she read these verses.
My eyes overflowed with thankfulness. Thankfulness for a friend who knows that what we always need is to be pointed back toward the savior and healer of our souls. And thankfulness to God who is faithful even when I’m faithless.
Although I was familiar with each of these verses, God gave me fresh emphasis and fresh hope from them this week.
My entire life I have CRAVED stability. Even though I know He is my sure foundation, reading this reminder was so sweet. HE will be the SURE FOUNDATION for YOUR TIMES. Yes! I needed to be reminded of this.
This is a story we all know. And sometimes when we’re so well acquainted with a passage we miss something good. And, sometimes it just stands out to us right when it’s meant to. He rebuked the wind and waves and there was a GREAT CALM. I’m praying now that He do that for me. Rebuke whatever is necessary and give me a great calmness in my soul.
I surely know these things. I’ve broken it down for the youth in church before. But it freshly calmed my soul to read these words. Yes, my soul, find rest in God. I’m praying that part of the verse. Because of all the things HE is, I will not be shaken.
For the next bit of time these verses are in a prominent place on my kitchen cabinet. The plates in the cabinet and the vitamins and medicine below mean I will see them many times a day. If I leave them too long, I will start to overlook them, but for at least a couple of weeks this will be helpful.
Y’all know how I love my audio-books. But, this week I didn’t allow myself to download a new book. I just need to hit the reset button. During this “reset” I will re-establish time for Bible and prayer. I will allow myself to think (some) and pray for God to give my soul the rest it really needs.
I’m also looking forward to starting a Bible study soon. I feel sure it came about at just the right time, that’s always how it seems to work. I was listening to a video by Edie Wadsworth, who blogs at Lifeingraceblog.com, and she mentioned an upcoming Bible study of Lent. I have never studied Lent, I barely know what it means. As she talked about her study of the Prodigal Son and how it had influenced the Bible study she wrote for Lent, I was eager to sign up for it. If you too would like to check out her study on Lent, you can go here.
It’s not spring; but I’m obsessively organizing! I’m determined this is THE year.
Are any of you like me, continuously frustrated with stuff that seems to multiply when we sleep? Any of you want to join me in this goal I’ve set for myself? I’m determined that this year, by the end of the year I will have achieved a goal I’ve wished I could for a long time.
The shop outside is a whole nother beast, but by year end (really I hope by summer’s end, but I’m giving myself the whole year, in case):
All closets in my house will be orderly and well organized.
My stuff (in closets and storage areas) will fit in those designated spaces without any random stuff outside of those areas because there is too much to fit.
I no longer want to look around certain rooms with a feeling of annoyance at what feels like clutter to me.
To achieve this goal, we will need to :
Remain committed, not allow ourselves to forget how the clutter makes us feel, therefore making this a priority.
Although it’s a lot of work, keep in mind this won’t last forever. Remember, we’re doing this by year end!
Be ruthless in getting rid of things that we don’t need, use or love.
Establish some guidelines to help our homes stay de-cluttered, not overflowing.
I used to have a hard time parting with things. I am married to someone who still really struggles with parting with things, although he’s definitely gotten much better!
I used to think the only risk was in getting rid of something I might regret. I came to realize though KEEPING THINGS HAS A COST TOO. I’m more willing to risk the possibility now that I might wish I had something I got rid of. I love to look at clean spaces and that is worth a small risk. Things we keep have to be cleaned or dusted or reorganized. Again and again and again. I’m so tired of that cycle. There are much fewer things that make the cut these days.
It has taken me a long time to get to this point, but I’m much quicker to donate something that I have a small pang of worry that I’ll regret, rather than keep it.
If I’m not using it, I don’t want to dust it or wash it again.
I’ve gotten off to a good start, and the progress I’ve made is providing motivation to keep going. So far I have:
Reorganized My Christmas Decorations
Okay, these items are stored in our outdoor shop, but I wanted to include them in my progress. I’ve wanted to do this for YEARS and finally did it. After I donated a small bag of ornaments, I reorganized all of my Christmas decorations and labeled them.
In years past, Jay and Evan would bring all the green and red boxes from the rafters of the outdoor shop. You can see this is a lot of boxes. I would have to lift the lids to see what is in them, and because it takes more than one day to decorate inside and outside, I would have to look in all the boxes TOO many times to find what I was looking for.
The before! All the Christmas decorations spread out for for sorting/reorganizing, plus any other items that had been shoved in here from other places to have room for the spread we had out on Christmas Day. What a mess!
All the boxes, sorted and labeled for easy retrieval of what items I’m looking for.
Ah, and now I have my little table back. It was used for food set-up on Christmas Day. It’s my favorite spot to work on blog related stuff. This is one of my favorite places in my house. I’ve got this little corner just how I want it.
Until this year, when I have a spare bedroom for the first time, these boxes would be cluttering up my kitchen and living room until I was done with them. This way, they can be put in another room out of my way and I can easily find the box I need at that time and leave the others stacked up till I’m ready for them.
Two Options of How to Label the Boxes
I listed on the front all the categories of items that are in the box. I’m going to try this method. If I add much to the Christmas decorations or need them organized differently, I will try the second method, described below the pictures.
Alternate box labeling method: you label the box itself with 1, 2, 3, 4 etc and then keep a small notebook or card file. The card or page labeled #1 would list all the items in box #1 .
If what is stored in the boxes changes much this might be the easier way. OR, if you wanted to look at your list and pull out from storage only certain items this is a good way to go.
Done a TON of Work in my Closet
I’m not 100% satisfied with the state of my closet, but I’ve put in a lot of work and it’s much closer to my end goal. I will share pictures when it’s finished. There’s still a couple of things I’m unsure of how to best store, and I didn’t get to the corner that has our Christmas boxes, ribbons and wrapping supplies.
One reason our closet is such a big job is for years it has been a catch all for stuff we didn’t have room for elsewhere. We have board games, boxes (from purchases, like iPhones, Kindle’s, laptop) extra blankets, gifts purchased in advance, a box for donations, Christmas wrapping supplies, a large box of frames and decorative things not currently used, and memorabilia in addition to the “normal” closet stuff. No matter how much I clean it, seems like before I know it, we’ve accumulated a bunch of stuff in there again. I’m working now not only to declutter and organize what is there, but to stop the flow coming in.
With the exception of the small corner I didn’t get to, everything was pulled from the walls and I vacuumed crevices, dusted baseboards and any walls that needed it. Every game box and stored item was wiped with a damp cloth. Y’all, that alone was a pretty big job with lots of ups and downs on the step stool. The sore muscles I experienced the next day were a felt reminder of a job well done.
I worked a couple of hours on one day just getting rid of things, making quick decisions about clothing and items easier to part with. The 2nd work day I spent the entire day cleaning, reorganizing, washing blankets and the baby clothes I mention in a paragraph below. AFTER I had gone through the first time, on the 2nd day I had 3 boxes of donations and 2 bags of items I threw away.
This is my back seat loaded up with donations after the 2nd time going through my closet!
I Sorted Through the Linen Closet (except for the shelf with medicine that still needs to be done)
I got rid of a few things and washed almost everything that remained in here. If it had been used recently, I didn’t, but all others got washed. No more dusty/musty smell.
This closet houses the bed linens for all beds except mine, I keep those in a closet in our bathroom. We also keep the medicines that aren’t used regularly, and first aid supplies on a shelf here. That shelf still needs reorganizing.
Several years ago I read this tip and it’s right up my label-maker-loving alley! All the sheets on this shelf are full size. Another shelf for twin. If you have fewer you could keep them on the same shelf and just label under each. This is a time saver when you’re looking for a particular item. And, I just love how it makes me feel when I see those labels. It makes me feel a bit more organized whether it’s true or not.
As I Organize and Clean Closets I’m Washing any Dusty/Musty Smelling Items
The blankets stored in my closet and the linen closet smelled dusty/musty so I washed them with a 1 1/3 cup of vinegar in the wash water and then used a good smelling liquid softener in the final rinse.
Those Few Pieces of Sentimental Clothing Items From Each of My Kids
Over the years I had pared down and pared down until I have just a small amount of clothing items from all 3 kids. And the blankets that were special to me (they never cared a lick for blankets or stuffed animals!).
These items have hung in different closets in our home, moved from room to room over the last several years. I took them off the hangers, treated the stains that had bled back through and packed them all up together in a clear comforter bag. Did you know that “old” stains that have been cleaned will bleed back through over time? Most of stains came out but there were 3 or 4 items that I didn’t put in the dryer because they need to be treated again.
On hangers, these items were taking up prime real estate space in my closet. Stored in a comforter bag (and this is for all 3 kids so I think this is pretty good!) I can find a better place to put them.
Some of the Things I’ve Held onto in the past that didn’t make the cut this time:
I had saved some pillows and had planned to reuse the insides and make new covers. They had been in my closet long enough to be dusty/musty smelling. It made me sad, but I threw them away.
Pretty bags I like but don’t love. I realized that I never chose those bags anymore. Although I liked them, I have others I like more. Pretty bags (I really do use them!) are a real weakness for me.
Our homes are continual works in progress. I will never reach the point I think my house is perfect, I know that. Something will always need doing, cleaning, organizing, freshening up with decor. I will never feel like I’m finished.
But, I am determined that there will be LESS to clean, LESS to reorganize and I know that some empty cleared spaces will feel so good to me.
What do you think? Is this YOUR year to reduce and declutter? Let’s do this together!
Without such a full house of hungry people to feed, just 3 of us during the week, we’ve slid into some bad habits. We’ve been eating out too much, and finding it so easy to get takeout instead of plan, shop and cook.
This week, right after church my sweet boy said, “Mom, I’ll take us all out to eat at LaBamba if you’ll cook food for me to take this week.” I hadn’t cooked for him in a couple of weeks. We had gone out to eat a more expensive meal for my birthday the night before so I had been planning to cook something simple (tacos) for lunch. He knew if I cooked lunch I wouldn’t want to turn right around and stand on my feet (plantar fasciitis) for more cooking. When I send food with him I usually send a lot, so it isn’t quick unless I’ve done something in the slow cooker.
Y’all, at times it’s still hard, these kids growing up. But, more and more they keep showing me some reasons why sometimes it’s a little sweet. Like when they take you out for lunch on their dime. Or give you $ for a weekend at the beach for your birthday.
We’ve all been wanting to eat a little better, my boy included. It helps when we’re all on the same page that way. I made a quick trip to the store and this is what I came up with for this week. I hoped that for those of us at home, having something already cooked, and food that could be mixed and matched we wouldn’t be so tempted to pick something up. The plan has been a success. For this week 🙂
I cooked several things we could mix and match to have some variety.
I pan-fried about 25 chicken breasts
Baked 15 sweet potatoes
Cooked a pile (a bunch, several cans) of green beans
browned 3-4 pounds of ground chuck and made taco meat with it . I bought burrito sized tortillas, soft taco size, already had regular hard taco shells and I bought salad ingredients for taco salad for plenty of variety.
I bought a head of romaine lettuce, grape tomatoes, feta cheese and mexican cheese to use for taco salad or salad with the pan-fried chicken or side salad with the sweet potatoes and chicken.
I started the potatoes baking first, got the chicken started, then the green beans, last the taco meat. I cooked it all, packed Evan’s food, put ours away and cleaned the kitchen. We’ve eaten this food each day but only made the big cooking mess once and I’ve enjoyed that.
I sent some of each with Evan, and kept some of all of it for us. Jay and I enjoyed eating the chicken a variety of ways and didn’t get tired of it so we never even ate taco meat. When I saw we weren’t going to eat it I put most of ours in the freezer. Jessie enjoyed the burritos and soft tacos.
I pan-fried the chicken in a little peanut oil and seasoned the chicken with Tony Chachere’s Creole Seasoning. Although I’ve pan-fried chicken this way for years I realized something just this time. The breast pieces that were the best and most moist (others were dry and not soft) were the ones that I cooked on med-high while they browned and then covered them and turned them down to medium or medium low where they kind of steamed and kept the moisture in better.
Although it’s creole seasoning and can be spicy, you can control that somewhat by the amount you use. This is a delicious seasoning that we all like, but I don’t put too much because some don’t like it as spicy as others.
I washed the potatoes and rubbed the skins with oil. I used peanut oil this time and then baked them. I put foil on the pan to keep it from getting sticky but didn’t individually wrap the potatoes.
I keep some bacon grease in the fridge for such as this. I put a tablespoon or two and added some Lawry’s seasoned salt to the store brand (Shur Fine) green beans (with some of the juice from the can left in) and they were delicious! I brought them to a boil and let them cook for just a few minutes to get the seasonings mixed in. Jessie doesn’t like vegetables but tolerates green beans better than most others.
I made taco meat that could be used for burritos, soft or hard tacos or taco salad.
The second time we ate the chicken and sweet potatoes we switched out the green beans for salad. Oh yeah, and that dark color in the sweet potato, I mixed 1/2 cup brown sugar with 2 tablespoons cinnamon to make a cinnamon sugar to use for the potatoes. It takes very little to make the already sweet potato like a dessert. The potatoes were on the small side so it was less than a teaspoon per potato that I used. Delish!
Another day we had a big salad with chicken. I forgot to take the picture before it was messy looking with dressing.
We’ve eaten too much fried chicken tenders and such in recent weeks. I think our bodies were craving some green beans and salad.
If Your Family Resists Eating Leftovers
I’ve had some friends say their family just doesn’t like leftovers. Now that there are fewer of us, the temptation is greater not to cook. But when our house was full of hungry people and a busy mama that doesn’t really love to cook, it just wouldn’t have worked for our family not to eat leftovers.
If your family doesn’t like to eat the same thing 2 times in a row, try cooking several things at once (only dirty the kitchen in a big way once) that you can rotate so the plate isn’t exactly the same each time.
I posted earlier about Jessie’s alopecia (hair loss). Evidently, since the last time we saw her pediatrician, Jessie has more hair loss. Or, it was just more noticeable to him than before since she has a large bald patch right in the front. Her doctor seemed surprised, and before I could bring it up he did. He said he wondered if the hair loss was an indicator that her thyroid dosage needed to change and he also wanted to check her for other auto immune issues.
First of all, before I share anything else, I want to say I’m no expert. I’m just sharing what I’ve learned as a mom who tries to educate herself on issues that affect my child’s health. I’m not even what anyone could call a “health nut”.
I’ve had friends tell me they haven’t thought about testing vitamin levels, which is why I’m sharing. This list isn’t meant to be a list of all that you should check, this is just what we are currently doing. So much of what I’ve learned on this journey is from other parents, so I try to pass on what I’ve learned if it might help someone else.
Although there is a lot known about Down syndrome, there’s still so much that isn’t well understood. I find this new research showing differences in the immune system of a person with Down syndrome really interesting. While I don’t understand all the ins and outs, it’s clear that the immune system is a key player in many of the health issues common to people with Down syndrome. It has been known there is something different about their immune system, just not exactly what. This research has led to clinical trials that hopefully will lead to solutions for some of these health issues that affect many people with DS.
Considerations for When you get Results for Vitamin Levels Testing
I have learned that often doctors or their nurses will say a vitamin level is “normal” when it falls within normal ranges, but might not be optimal. If you ask the question if its okay to be at the low end of a large normal range(for example 30 for a range of 30-100) you might learn that it’s better, or optimal, to be in the middle of the range, but if you don’t ask that question you might just get the answer of your results are normal. Even if they are barely below normal, I’ve been told they’re normal.
I always ask for the number (not just that it’s normal) and ask for what the normal range is and I write it down. For most vitamins, you really do want to be more middle of the range.
I’ve had the experience of a nurse telling me I could give Jessie a multivitamin when her B-12 was just barely below normal. (This was when we were between pediatricians and a nurse I didn’t know.) Our previous doctor had Jessie taking a B-12 supplement. I felt confused when she told me this and while on the phone we compared the previously doctor recommended B-12 supplement to the multivitamins I had on hand. The amount in the multivitamin was nowhere near what the doctor had previously recommended (at that time had been 25 or 50 mcg). She then said, well, you can just keep giving her what he told you before. The amount in the multivitamin wouldn’t have been enough to correct a deficiency.
See #3…..ASK QUESTIONS! And if you’re not sure about the answer, ask some more. If they don’t like questions, find another doctor who doesn’t mind them.
In addition to Down syndrome being a risk factor for thyroid issues, there is a strong family history on my husband’s side. Jessie has been on thyroid meds for hypothyroidism since she was 5 or 6, I think? It’s hard to keep up with it all, she was pretty young and seemed tired all the time. Now, I know we should have also had a sleep study when we were looking for why, but that wasn’t commonly known then. Because of the family history and symptoms that might be related, her pediatrician at the time said he felt comfortable treating her when some doctors might have chosen to watch it and see what happens.
My husband had been on the same medicine for hypothyroid for many years, so I was familiar with both the condition and the medicine, and I felt comfortable with that. As years have passed, she still has a low energy level and symptoms that could be related to her thyroid, so I have been glad to not have that question, to not always be wondering if things might different if we were treating her for it. Her energy is definitely better now that she is on CPAP, but she still has a low energy level.
Every year we have her blood work done to check her thyroid levels. I’ve read that it’s common to have dosage changes during puberty, but Jessie’s dosage has never changed since she started on medicine.
When we got her results this year, her free T4 was nicely in the middle of the range. The TSH was slightly toward the higher range of normal, but well within the normal range, so no medicine changes at this time.
This means thyroid issues are eliminated as a cause of the hair loss. The blood tests related to immune system came back as normal too. We don’t do those every year. We have had them once before but it’s been several years.
We Check Some Vitamin Levels and Here’s Why
For several years now, we’ve also been checking some vitamin levels when they draw her blood for the thyroid testing.
There’s a lot on the internet about different supplements specifically formulated for Down syndrome. They’re expensive. If they were affordable for us, I would try them to see if they made a difference for us. But they aren’t affordable for us, so I’ve tried to educate myself on what vitamin levels people with Down syndrome have a tendency to be deficient in.
I’ve asked friends who are more knowledgeable what they have tested, what their experiences have been and I’ve done a little reading. I haven’t done nearly the research or reading on this that some have. Again, I don’t claim to be any expert. If you know other things we should check that aren’t listed here, please share in the comments!
If you haven’t ever checked these, I would say it’s a good idea to check them at least once to rule it out. That’s exactly how it became something that we routinely check now.
I don’t know how common it is for B-12 to be deficient in people with Down syndrome in general, but Jessie’s B-12 has tended to be low, or only just barely within the large normal range unless we supplement. Her numbers do always come up when we supplement.
Jessie was only 6 or 7 when I noticed she had several gray hairs. I asked about checking her B-12 because I read that sometimes gray hair in children was associated with low B-12. Although he thought it highly unlikely Jessie’s B-12 was low, because she loves meat and eats it every single day, he had no problem checking it for me. He was pretty surprised when her B-12 results came back at just below normal. The normal range is HUGE for B-12 so hovering around the bottom isn’t great. Since that time Jessie has taken B-12 in varying dosages and we usually check it once a year.
This time her B-12 was the highest it has ever been, 1100, which is actually elevated. She’s never been in the upper range before! The normal range is 193-986. Her doctor said it wouldn’t hurt her though, that her level is fine.
At 16, she’s an adult weight and I give her adult vitamin dosages. I buy the Member’s Mark brand at Sam’s (sublingual, melts on or under the tongue) and although I’ve read much about sometimes store brands vitamins aren’t good quality or well absorbed, the B-12 in this brand is clearly working for us!
Her vitamin D level was 29, which is one point below the beginning of the normal range. For vitamin D, 30-100 is seems to be the most widely accepted normal range. This is the range used by both my doctor and Jessie’s pediatrician. My doctor said he prefers to see a number in the middle of the normal range.
Although I try to stay on top of things, I feel like I constantly find something I’ve missed. I haven’t understood the connection with Vitamin D to the immune system. These links from National Institutes of Health ( a complicated read with medical terminology)and Harvard ( this one is easier to read) show just how important Vitamin D is to the immune system. These articles make it clear that low Vitamin doesn’t just make you feel fatigued, that Vitamin D is really important to a healthy immune system.
In addition to the possibility of Down syndrome affecting her absorption of Vitamin D there are other factors that make Jessie more likely to have a D deficiency. She doesn’t eat the foods that are good sources of vitamin D, she doesn’t like to spend time outside, and she’s significantly overweight.
You CAN get too much vitamin d and that can be a problem, so you shouldn’t supplement vitamin without having yours tested. Mine has been low also, so I’m giving Jessie the dosage that my doctor recommends, 10,000 units per day (with a meal that has some fat in it) until we’re in the normal range. In the couple of weeks leading up to Jessie’s blood test I had already started being more consistent, so I have to wonder if her level previously was even lower, which makes me feel terrible.
My doctor retested me after 6 months. It takes a while for the vitamin D to come up once you start supplementing. He said I was in no danger of getting too much in that time frame before we retested. Once I got back to the normal range my doctor bumped me down to 5,000 units per day. I will do the same for Jessie although this is more than what I’ve read as a daily recommendation.
We haven’t always tested for Zinc and did last year for the first time. Zinc is another one that’s important to the immune system. I didn’t realize it wasn’t on the the list for this year and it wasn’t retested. If you haven’t before though, this is a good one to check.
If you have information or experience to share I would love to hear from you!
This was a long post, it’s colder than usual here, and I seriously need a cup of coffee. A friend gave me some Dunkin’ Donuts white chocolate peppermint coffee and it’s calling my name. Hope you’re having a great week!
This week I finally took Jessie to have blood drawn. We do this annually and I think I dread it as much as Jessie. Probably more, because she only gets a little advance warning and I dread it well in advance. I don’t do well with any of my kids being in pain.
It was right before Christmas when we saw her pediatrician and he ordered the bloodwork. Because of billing issues and which lab the blood would go to (from that office) we didn’t have it done that same day. He put the order in and said we could stop by the Dothan office any time. She cried when we talked about it, anticipating that it would hurt.
It’s almost always hard to get her vein. They have to wiggle the needle around once its under the skin and it’s painful. It wasn’t easy this time either, but we had a great nurse that kept her talking about wrestling the whole time. He said her veins were tough to get to, deep under the skin. In explanation, he said the needle was about all the way in (a pediatric butterfly type) when he got through her vein.
There were no tears on her part which meant tears weren’t required for me either. I usually cry if she does when she has blood work, because she has a high pain tolerance. If she cries it really hurts. There were no tears this day.
Jessie and I had gone to lunch with my sister, her Aunt Debbie, right before we went to the lab. I always promise Jessie something to look forward to afterward like going out to eat (her favorite thing to do!) or ice cream, whatever works at the time. Since we just ate lunch I was stumped as to what to bribe inspire her with. Jessie loves having her own money. I told her if she tried to be brave I would give her $5.
In my mind, trying to be brave didn’t mean not crying if it hurt. Trying to be brave meant not crying and making me feel terrible before we got there and while waiting.
I know it hurt, but she was the sweetest bravest thing. So grown up about it all. I couldn’t be more proud of her.
She has always been a good patient. Just like with my other two, I’ve always been able to talk to her and if I told her something would not hurt, she knew she could trust that I was telling the truth. If something was going to hurt a little I would be honest about it. That made her not feel anxious at other appointments that weren’t going to hurt.
It’s just the last couple of years that Jessie has anticipated events like this and worried over them in advance. For that reason I give her a little advance warning, but not too much time to keep thinking about it. I told her toward the end of lunch that we were going to the doctors office next.
Aunt Debbie waited in the lab waiting area while the deed was done. She could hear Jessie and the nurse talking and didn’t hear any crying. I shared with her all what the nurse had told me about the difficulty of getting her vein and just how brave Jessie was.
When we got out to Aunt Debbie’s van, she handed Jessie a ten dollar bill and told her how proud she was of her. Jessie really likes knowing that adults think well of her. She likes knowing Aunt Debbie finds her brave and she really likes money. I told Debbie that Jessie is probably going to request that she go with us to every appointment of this type hoping for another $10!
This year the appointment wasn’t nearly worth the amount of dread I had put into it, thankfully 😊
In next week’s post I will share what tests Jessie has done annually and why.