Currently, the clock app on Jessie’s iPhone is my favorite tool. It is definitely helping keep Jessie out of trouble and reducing my stress level. We need both of those things to happen 🙂 While having a phone of her own has been a huge distraction, it has also given her independence and been used as a helpful tool.
I’ve used timers over the years for myself and all of the kids in a variety of ways. In recent weeks we’ve put to good use both her iPhone alarm clock and timer in several helpful ways.
Jessie doesn’t have a very good concept of how much time has passed. When we need to get dressed and ready to go somewhere, telling her you can watch tv a “few more minutes” and then get dressed just doesn’t mean much to her.
She will often say, “I’ll be ready in 15 or 30 minutes”, when really we’re leaving in five minutes. In addition to helping us get out of the house, I’m hopeful that over time using the timer for varying amounts of time will help her have a better idea of how long 5 minutes or 15 minutes etc., actually is.
In addition to her lack of concept of time, she would just rather be watching videos, coloring, or playing until the very last free minute. I would tell her to get ready and then once I’m ready would find that she wasn’t. For a while, this was causing us a lot of stress as we then had to really hustle to get out the door on time.
In addition to using these tools, I did one time make her miss going to church when there was someone she could stay home with. Along with the threat of missing out on something, we’ve stepped up our use of alarms and timers and it’s helping a lot.
Ways we use the timer and phone alarm:
To wake up in the morning:
As part of our bedtime routine, we discuss the plans for the next day and set her alarms. If she already knows the plans for the next day, often she has set them on her own. She leaves some preset that she just has to turn on.
Jessie sets her alarm for the time to wake up. THEN, she sets a second alarm for 30 minutes later. She can lay in her bed and watch a video until the 2nd alarm goes off, then she makes her bed (she started this on her own recently!) and comes to the kitchen to make her breakfast.
Because we homeschool, this system works for us. If she had to be up super early, she wouldn’t have as much time to watch a video. She does still watch a video most days for a shorter time even if she has to get up early (which isn’t often). She absolutely can get up and get ready without the video but this gives her a minute to shake the fog and be more alert when her feet hit the floor.
Transitioning from one activity to another:
Jessie is grumpy about transitioning from her free time to whatever is next. I go in her room and tell her she has x minutes. Often I give her 15 minutes. She either sets an alarm for 15 minutes later (I tell her what time to set the alarm) or sets a timer for 15 minutes. Most of the time this helps her transition more cheerfully to the next (less fun) activity.
Taking a break from a work activity without “forgetting” to start back:
If she has several chores to do that require standing, bending etc, she can’t do that for long without needing a break. We are working on this (that’s another post) but for now, she does some chores then she can set a timer for a 15 or 30 minute break, then finish whatever she needs to do.
Doing an activity for a set amount of time:
If Jessie’s room has gotten really out of control, it feels overwhelming to her to tell her to clean it all on her own. But, if I tell her to set a timer and turn on her music or video and clean her room for 30 minutes, that feels much less overwhelming. Sometimes, when the timer goes off if she isn’t finished she will keep working.
I use this for other work type activities too.
Help us get out of the house on time:
On swim practice days she sets an alarm for 12:20, which gives her 25 minutes before time to leave our house. When her alarm goes off she puts on her swim suit, brings me a brush and pony tail to put her hair up and puts on her shoes. Ideally, she also brushes her teeth.
Setting an alarm for the time she needs to stop doing whatever else and get ready has been such a huge help.
We don’t have a perfect system and we do not have it all figured out but this is a tool that has been really helpful in making things run more smoothly. Yes, I could just make her do these things, but this makes her much more compliant without as much nagging or fussing and I’m a fan of that.
I’ve had a chance to spend time with friends this week and bought some pretty new things at a garden center today. I’m having a great week and hope the same for you!
Jessie had wanted to get together with some friends. We chose this week because her friend Gracie was out for spring break. It’s not that often that I let her have more than one friend over at a time, so this was a real treat for her.
About an hour before we met for lunch, I had gotten the news that we owe the IRS. It could be worse, but to us it’s a lot of money. It was weighing on me when we met at Chick Fil A to start our “girl’s day” as Jessie says.
I think it’s every day, but I’m not sure, that each employee taking orders can choose someone to bless with an act of kindness, a free meal. Jessie and I have been the recipients of this kindness one other time.
Today, there were 5 of us, and we were all treated to lunch! It couldn’t have happened on a better day. I had been looking at my bank account online right before we arrived and thinking about the whole tax thing. This random act of kindness just felt like a hug from God, a confirmation that he sees, he knows.
After lunch, we headed back to our house for a few hours.
Jessie has this game she has played with her dad (and sometimes her brother) ever since she was a toddler. Sometimes she goes in the closet, but most often she gets one of them into our walk in closet and turns the light off and cackles and cackles. It doesn’t happen quite as often now, but it used to be a daily game they played. Daddy makes a lot of fuss about, “Let me outta here!” and the like. The banter and negotiations go on for a while before she lets him out. It sounds a lot like the smack talk from the wrestling Jessie so loves to watch.
Well, Gracie was not fond of being in the closet with the light out. Jessie has done this once before, she always thinks it will be fun, but her friends think not so much. I think this time Jessie understood (afterward) that it really did upset Gracie and knows now that daddy is the only one she can play this game with. I know if tables were turned, and she were at a friend’s house, and hadn’t been there a lot, she wouldn’t think it was fun either. Sigh. Hopefully, she understands this now.
The girls just couldn’t get into a groove at first. Some wanted a movie; some wanted a tv show. Two of them wanted to sit in the only chair in Jessie’s room rather than on the bed. (The chair is more comfy and closer to the tv for tv watching.) I suggested they could be more comfortable in the living room, but they wanted to watch in her room. They were watching tv but seemed a little bored with it. I offered suggestions of games they could play but every suggestion I made was shot down.
After I helped with negotiations, the girls settled on a show, seating arrangements, and had something to color while watching. I think they had all seen the show before and were a little bored honestly. Once they had something to color while they watched, they chatted with the tv going in the background and had a good time until time to eat and go to church.
I share these details because I think it’s important in the conversations about Down syndrome that we be honest. These are NORMAL situations, but if we don’t share them it can look to other parents in the same phase that we don’t have any struggles. It isn’t all just about Down syndrome either; I remember advising my older two with friend relationships, it just happened on a little different time line. I see Jessie having the maturity to maintain friendships now, with a little parental oversight to help with compromises and negotiations over where to sit and what to watch 🙂
At church I was filling in as teacher for a friend. My preferred way to do the lesson is to go around the room and each teen read a portion of the scripture.
We were having a lesson from Luke 5 where a man’s friends carry him to Jesus. Because there’s a crowd, they lower him through the roof of the house, believing if they can get him to Jesus, he’ll be healed. Part of what we talked about was that friends help friends get to Jesus.
One of the guys in the class helped Gracie find the verse she was going to read. I had helped Ashley find hers. Jessie likes using the Bible app on her phone as it is easy for her to find the verse she’s looking for.
These 3 girls were in the class with other kids around their age. They each read a verse from our lesson, just like everyone else. Something about that just warmed my heart in a way that stayed with me the rest of the night. I think some of the other teens might have been surprised that the 3 girls could all read so well.
At the end of class when I asked if any of the students would like to pray for the requests we had talked about, Jessie volunteered. Most kids in her class feel self-conscious about praying in the group but she doesn’t seem to.
As I reflect on this day with these three girls. I am thankful for many things.
I’m thankful Jessie has good friends. It has been a challenge to get to this point and I’m SO grateful for where we are now.
I’m thankful for the ways I see her continuing to mature to be a better friend. A couple of years ago, she would have struggled with the compromises I saw her make today without complaint. She understands that to be a good friend that’s what you have to do.
Jessie’s grateful heart
She thanked me for being a good hostess 😊. She said in roundabout ways that she appreciated having her friends over and the little ways I accommodated all of them. She appreciated that I took them to lunch, made food for supper that they liked and that I had bought and made them pink lemonade.
She has such a tender and grateful heart and that makes this mama really happy.
Almost every time she prays, she prays for people to come to know God. She says they need God. It doesn’t seem perfunctory, it seems to come from a place of understanding. I’m thankful for the simple and heartfelt way she prays for what people need most…to know God.
This week, let’s remember to be like the fellas from the Bible story and be confident about where all true healing comes from. They knew Jesus was the answer and they helped their friend get to him. After their friend was healed it says “And amazement took hold on all, and they glorified God.”
And like Jessie, let’s be grateful for every little thing.
World Down Syndrome Day is a day set aside to raise public awareness of Down syndrome. It is celebrated 3/21, because Down syndrome is caused by having 3 copies (rather than the usual pair) of the 21st chromosome.
For parents who will in the future receive the diagnosis that their child has Down syndrome, it is so important that the “awareness” shared is a more complete picture of what it is like to have a child with Down syndrome, rather than just the cold medical facts many parents are presented with.
Parentsdesperately want to know if their family is going to be okay. I want to share with you that our family is more than okay! As I gave a lot of thought to what I wanted to write for World Down Syndrome Day, I knew what new parents and family members need most when their baby is born with Down syndrome is HOPE.
Sixteen years ago, when our third baby was born we didn’t really know what Down syndrome was. When we learned shortly after birth that the doctors were pretty sure she had Down syndrome, we had no idea what that meant for our family.
My husband especially felt blind-sided and grieved. Even early on, once we got the diagnosis, I could see that God had been preparing me for what was to come. Even in our fears in those early days, it was so clear to us that Jessie was meant to be here.
If you or someone you love has recently found that their baby has Down syndrome I want to address the major fears we had at Jessie’s birth and the way they have worked out.
There are some pretty scary sounding possibilities that you are faced with when you receive the diagnosis. With my other two kids, most of those things could happen to them at some point in their lifetime, but I wasn’t made to consider that when they were newborns.
The way I came to view this was like the pamphlet you receive from the pharmacy when you get a new prescription. Any of those side effects could possibly happen to you, BUT, no one person experiences all of the possible side effects. The same is true with Down syndrome.
Your child/loved one could experience any of those health concerns but will not experience all of them.
Jessie was born with two heart defects, ASD and VSD. Her heart defects were diagnosed at 2 weeks and she had open heart surgery at 3 months old. It was a struggle for her to gain weight until she had heart surgery. Those weeks before heart surgery were emotionally and physically draining as we tried hard to help her gain weight and anticipated heart surgery. While they affected her before surgery, hers were the easiest kind of heart defects to repair surgically. She came through open heart surgery like a champ. Her heart is healthy now, and she’s otherwise been mostly healthy.
Jessie had two sets of ear tubes (I mean, my son without DS had one set), she has not had any hearing loss. She had eye muscle surgery (elementary age) and wears glasses.
Will she be able to feed herself and behave in a restaurant?
This seems so silly to me now, seriously, so please don’t judge me to be crazy. It shows my complete ignorance of Down syndrome at the time. You might rightly decide we think too highly of eating out if this was one of my first thoughts. Of all the possible questions on my mind, one of the first things I wondered was whether our child would be able to function independently enough to feed herself. I wondered if she would behave well enough for our family to eat out in restaurants.
She learned to feed herself at slightly behind the age of other “typical” babies. Not only can she feed herself, she can make herself biscuits in the microwave for breakfast, and recently made sandwiches for herself, her dad and me after he and I had been out doing yard work. She would rather watch tv or play video games but she sometimes helps me bake. She has chores, earns an allowance, and is pretty independent in many ways around the house.
She has eaten in restaurants almost from birth 🙂 She was taught to behave and was disciplined when needed. She behaved better than most kids her age when in restaurants as a baby and toddler. Although sassy, she is kind, thoughtful, and very appreciative. She was taught to be this way in the same way her two siblings were.
How will our other two children be affected? Will they still be able to do extra curricular activities?
I worried how our other two children would be affected. Our oldest had just turned 7 and was starting gymnastics. They both played t-ball. I wondered if Jessie would have health concerns or other factors that would restrict our family activities.
Our other children have been affected, but mostly in positive ways.
Jessie had physical, occupational and speech therapies in the first few years of her life. That was a challenge for me as a mom of 3 and homeschooling. But, it helped Jessie, we made it through, and it wasn’t an issue for my other kids at all. They enjoyed the therapists that came to our home at first. Sometimes they were interested and helpful; other times they went off to play.
Before Jessie’s heart surgery, we were under some stress trying to help Jessie gain weight. This did feel like a stressful time in some ways for all of us, but lasted a short time. The other more minor health concerns didn’t drastically affect our other children. We did have to make some trips for check ups a few hours away, but they kinda enjoyed the day trips. Parents, not so much, but the kids just watched videos and got to eat out.
Because of their exposure to all the therapies Jessie had, our oldest daughter later decided to become a PTA (Physical Therapist Assistant). She decided not to work in pediatrics; but she loves her job as a PTA. This is a direct result of the positive impact she saw the therapists have on her sister and our family.
Our older two kids weren’t restricted in participating in any of their activities because of Jessie having Down syndrome. Being the third kid, when Jessie was little she was plopped in a stroller and drug everywhere we needed to go. T-ball, softball, baseball, dance, gymnastics, football, soccer…they did it all and she was along for the ride. Once she was older she was cheering for them. When she was old enough to participate in gymnastics and then Miracle League baseball and Special Olympics they were cheering for her.
How our other kids were affected in positive ways:
Our kids at a young age were around not just Jessie, but other kids with Down syndrome and other disabilities. They learned that different isn’t bad, it’s just different. They saw Jessie as their dearly loved baby sister. They had anticipated her birth and loved her before she was born. She needed extra help sometimes and they were happy to give it. With or without a disability, that’s what you do for your sister.
They volunteered with Miracle League and helped with me with mailings for our Down syndrome group or whatever was needed. They learned to serve others through these activities and other volunteer projects that weren’t disability related. It was all good for them.
Yes, there were times it was a little hard for them. In the end, even those hard things served them well. God can use all things for our good and will for those who belong to him.
Those two kids that were 7 and 5 when Jessie was born are now 23 and 21. Having a sister with Down syndrome helped them to become kind, compassionate, and patient.
We all thank God for Jessie and can’t imagine our family any other way.
If you have a baby with Down syndrome, you will one day encourage another family. Your specific experiences will be different. The health concerns or level of difficulty might not be the same. But one day you’ll look back and won’t be able to imagine that your life had gone any other way. And then you’ll tell some other mama that she can have HOPE.
Happy World Down Syndrome Day, ya’ll. Wear some crazy socks. High five or hug someone with Down syndrome. Hug a mama whose kid has Down syndrome.
This year, World Down Syndrome Day coincides with our Special Olympic Track and Field Day, so we will be hollerin’ like a bunch of lunatics at our kids and friends that are racing. Good times.
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.
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.
With each of my kids, I have enjoyed watching their personality develop. I love seeing them become them become their own person, pondering the ways they are like the others in our family, and the ways they are distinctively themselves.
I’ve noticed some big changes in Jessie during the Christmas season in the last couple of years. I was just talking with a friend about the sweet changes this year that reveal ways that Jessie is maturing.
In addition to maturing, Jessie’s own individual personality is also becoming more evident. I enjoy watching her become her own person, with distinct and specific fashion choices, and other kinds of likes and dislikes. Although she is greatly influenced by us, her family, there are some things that are just her. I don’t think they’re about Down syndrome either, they’re just part of Jessie’s personality.
For instance, I have learned that gifts is a primary love language for Jessie.
It isn’t the cost that’s important, but she loves to receive and give gifts. No matter how small, when I’ve been away from home and bring her a treat she acts like the recipient of a winning lottery ticket. Hands clapping, grinning from ear to ear. She thanks me profusely. I get the same reaction for Icees, a stop by Sonic for a slushy with popping candy or sometimes even just for doing her laundry.
When she acts like you’ve given her a million bucks is it any wonder we get Icees too much? She expresses her very sincere appreciation when she’s been sick and I take care of her. Or when I do something like bring her a drink to her room as I usually expect her to be independent about such things.
I’ve known this for a while, but it has become increasingly noticable that Jessie enjoys giving almost as much as she enjoys receiving. She has wanted to purchase gifts from her, separate from the ones we give as a family to her siblings and cousins and always wants to buy gifts for her friends. At first it felt really stressful that I couldn’t indulge her in this, we simply can’t afford to buy 2 sets of gifts. And we can’t buy gifts for all her friends. Now, I’ve found ways for her to feel more like the giver of the gifts we buy as a family. I tried to do that in years past, but she just wasn’t able to keep the gifts secret so it just didn’t work out.
Two years ago Jessie simply could not keep a secret if she knew a gift I had bought. She would snuggle up with her big sister to go to sleep and would say, ” I can’t tell you that we got you a present. I can’t tell you that we bought you earrings.” She just couldn’t stand it. In her excitement, it was truly beyond her control to hold it in. Her communication skills have grown too. She now will say, ” I bought you a gift and can’t tell you what it is.” It helps that she isn’t sleeping with her sister these days because bedtime snuggling is the most vulnerable time for the secrets to escape.
Last year I didn’t let her know what gifts her daddy and siblings were getting because I didn’t want her to spoil the surprise. She really didn’t like being excluded. I honestly think this has given her the determination to keep the secret so she could be in on the excitement of shopping and then wrapping the gifts.
She so desperately wanted to buy gifts this year. She kept pestering me about it. She kept saying we needed to go Christmas shopping. I decided to give her another try. I hoped she could keep the gifts secret. We talked about it and I explained she could only help shop if she wouldn’t tell the recipients about their gifts. Although I didn’t feel sure she could keep the secrets, I finally decided it meant so much to her that I had to give her a chance. It wouldn’t be the absolute end of the world if she let something slip.
She knows most of the gifts that her siblings and our extended family are getting. She has done some of the shopping with me and has helped me wrap most of them, so she feels more like the gifts really are also from her. I can tell it hasn’t been easy for her, but to my knowledge she hasn’t given away any secrets and we’re just days away from Christmas! I’m so proud of her!
She even spent some of her own allowance to buy a small gift for a couple of her young cousins.
Last year, she wrote most of the gift tags. Partly because the space on the tag is small, and partly because she wanted to be the giver of the gifts, the FROM just said Jessie instead of all our names. She enjoyed that. She did that on some of the gifts again this year.
Another funny thing…..
When we were shopping this week at Walmart I bought her a couple of shirts and a couple for myself. In past years, when she’s asked for things during December, I would typically say, “It will have to be a Christmas present. You will have to wait till Christmas and I will wrap it and put it under the tree.”
So, when we talked in the dressing rooms about which shirts we were choosing, she spontaneously asked if she could wrap the 2 shirts I picked and put them under the tree. She seemed a little tentative when she asked. The girl just wants to give gifts! Then she asked if I was going to wrap her new shirts. This time I actually hadn’t planned to. I asked if she wanted me to and she said yes. Most kids would want the clothing right away. She really wanted to feel that she was getting a gift. Hey, that works for me!
We made some accommodations that made it easier for Jessie to enjoy shopping and wrapping with less frustration.
When possible Jessie has used the motorized scooters to enable her to enjoy shopping for longer. We also have a wheelchair, or use ones provided in store when needed. Without this, Jessie can’t shop for long before she doesn’t find it enjoyable because her feet hurt.
Jessie started off the season so excited to wrap but finds it frustrating after a while. She didn’t want to use gift bags in the beginning of the season, but after we had done some wrapping she decided using some bags was ok.
I have some pretty decorative boxes for clothing (Dollar Tree!). For the shirts she was giving me, she chose pretty decorative boxes that didn’t require any wrapping. She didn’t even want to tape them. She was tired of the tape dispenser at this point 🙂
Jessie mentioned quite a few times from Thanksgiving through the next few weeks that she wanted to go shopping and buy me a gift. She knows I like to wear earrings and she wanted to buy me some.
Finally, she took matters in her own hands.
She called her big sister and asked Jordan to take her shopping. They went the next night, just the two of them, to eat supper together and shop. When she left with her sister, she looked so grown up and sassy with her Vera Bradley cross body purse on and her money in her wallet. She looked, felt, and acted so grown up about it all.
This whole season her sincere desire to give has been so sweet.
She loves the way she feels when someone gives her a gift and she wants to make others feel the same way. That’s a pretty mature thought process. I’m enjoying these grown up sweet changes in my girl.
One last sweet thing… the other night after we had been shopping and found those new shirts, as she walked by the recliner where I was sitting, she told me I was the best mom ever. Then as she teared up, she said, “I’m bout to cry.” Of course, that made me cry.
I hope your Christmas is full of such sweet blessings. Merry Christmas!