It has been almost a year since we attended a family camp through the Joni & Friends Ministry. This experience was one we will never forget. It was an answer to prayer and God blessed us in so many ways through it... more than we even realized we needed. Isn't God so good like that?
We were so blessed to share a little bit of our story and our experience at Family Retreat with the Joni & Friends ministry team... Here is the video and article -
Joni & Friends is a ministry that brings practical help and Gospel hope to people with disabilities around the world.
They have been serving individuals and families living with disability for over 40 years. The founder, Joni Eareckson Tada, was in a diving accident in 1967 that left her quadriplegic. In her journey, she emerged from rehabilitation with a determination to help others with similar disabilities. Over the years, this ministry has grown to bring awareness about life with disabilities, to bring Gospel hope to those living with disabilities, and the ministry has reached so many both in the U.S. and internationally.
Isla just completed her 3rd grade year of Home/Hospital school. We have been SO thankful for her incredible teacher Ms. C. and her amazing paras! It has not been an easy season for Isla. They have been so supportive every step of the way. We are so proud of our girl!
We are excited for summertime! Her body does not handle the heat well and is easily tired out with activity, but we still pursue that fun each day even if it is just for short amounts of time!
She LOVES the pool and would go every minute of the day if she could ;) She generally can't last too long before being too tired out, but just so thankful we can do that!
We have a lot of therapies, doctor appointments, and a lot to work on each day, but we hope to soak up family time and fun often.
Zeke is still on a health journey - Some of the treatments he has been doing are working, but just partially. There is still more to explore and try. He has more appointments ahead and he goes to physical therapy as well.
With Isla doing fairly ok, my (molly's) health has been struggling pretty strongly. That is about how it goes. Adrenaline kicks in during the hard and when things even out a little, I crash. Would love prayer as I do a lot more appointments, imaging, testing, etc. for myself again. I am hitting some pretty big lows with my health again, and we are trying to figure it all out.... had to get more fluids last weekend and am just not feeling well. I had some new concerning imaging and would love prayer for clarity on all of that. I get pretty overwhelmed adding in so many of my own appointments. God always sustains us even through the hard.
Justin is doing fairly well... so thankful!
Days are very full of family and work at Boeing! There is a lot of stress, but he is seeking the Lord, and he lovingly reminds me God's got it on the days where I feel overwhelmed.
Father's Day is in just a few days, and we are so excited to celebrate him in that role!
Soooo deeply thankful for him!
We have been soaking up every moment of family time that we can. Quiet sweet quality time!
A bit more of our experience going to Family Retreat:
I remember over a year ago, a couple of sweet friends shared about Family Retreat, a camp for families living with disabilities. It sounded so wonderful, yet we wondered, is it just too much for us to do? We also felt insecurity - our family needs are a lot... is it too much for them? We were not sure if we would make it to family retreat even if we tried. We were praying we could go, but goodness, life circumstances were really clouding our optimism. It was one hard thing after another... While it may seem like we share quite a bit of our life, there are so many details and circumstances that we do not share. Our daily life is not a simple one... and given certain circumstances, we have to be so cautious about the decisions we make or things we do as a family. Again, that may not make sense to many, but that is our reality. It is not easy nor simple in any way to go away for even the day. We have felt isolated. We carry so much that is unseen. We have ached to be able to go to a place where we feel we belong and to find some respite.
I remember over a year ago, a couple of sweet friends shared about Family Retreat, a camp for families living with disabilities. It sounded so wonderful, yet we wondered, is it just too much for us to do? We also felt insecurity - our family needs are a lot... is it too much for them? We were not sure if we would make it to family retreat even if we tried. We were praying we could go, but goodness, life circumstances were really clouding our optimism. It was one hard thing after another... While it may seem like we share quite a bit of our life, there are so many details and circumstances that we do not share. Our daily life is not a simple one... and given certain circumstances, we have to be so cautious about the decisions we make or things we do as a family. Again, that may not make sense to many, but that is our reality. It is not easy nor simple in any way to go away for even the day. We have felt isolated. We carry so much that is unseen. We have ached to be able to go to a place where we feel we belong and to find some respite.
We had just come back from a medical trip to Philadelphia for Isla just a few weeks prior to Family Retreat last summer. We got some hard news about Isla's airway and Isla's VEPTR expansion surgery had to be canceled due to her airway not being strong enough to handle intubation/surgery. We felt sad, a bit scared about the future, and so very exhausted mentally, emotionally, and physically. But we decided to take a step of faith, pray it could work, and go. We asked God to use that time in a mighty way.
We arrived at camp to the most warm and welcoming atmosphere. We felt like we arrived already known. We felt so seen and loved from people who were strangers yet had such huge hearts that connecting felt so easy. The staff and volunteers went above and beyond to learn about our family before camp. They truly were so detailed in their care. SO KIND.
We knew that both our kids would be assigned a "buddy" for the week... Someone to come alongside them and love on them in the ways that they needed. We knew Isla would have a buddy that would have some medical background given her needs. We prayed for the need, knowing it was great, and God blew us away.
Isla and Zeke's buddies were incredible not only in their kindness and fun-o-meters, but Isla's buddies were both medical personnel who had so much background experience with Isla's special needs AND medical needs. They were qualified in all ways and energetic - keeping up with our spirited girl!
We knew that both our kids would be assigned a "buddy" for the week... Someone to come alongside them and love on them in the ways that they needed. We knew Isla would have a buddy that would have some medical background given her needs. We prayed for the need, knowing it was great, and God blew us away.
Isla and Zeke's buddies were incredible not only in their kindness and fun-o-meters, but Isla's buddies were both medical personnel who had so much background experience with Isla's special needs AND medical needs. They were qualified in all ways and energetic - keeping up with our spirited girl!
Justin and I were a bit like fish out of water - which everyone at camp told us was very normal :) ha! We are not used to respite time. We felt so odd, yet we tried so hard to take a breath. It is hard to get the nervous system to chill when it can't chill very often! We met some amazing parents and had sweet conversations with so many beautiful families! It was incredible to connect with others that just "get it."
We realized just how desperate we were for time like this and connection like this. We were able to get times of rest and connection that is just not our normal. And the kids could focus on FUN!
Because of the AMAZING volunteer buddies - we could trust that our kids had their needs watched closely and met beyond what we could imagine. They made sure to let us know to go take time to rest. While they took note of how busy life must be at home and how we must be on our toes at all times ;) (haha!) we were not too much for them.
Because of the AMAZING volunteer buddies - we could trust that our kids had their needs watched closely and met beyond what we could imagine. They made sure to let us know to go take time to rest. While they took note of how busy life must be at home and how we must be on our toes at all times ;) (haha!) we were not too much for them.
We felt zero guilt for our needs and only love in all ways. Wow... cue the thankful tears.
Every person that was leading or volunteering at family retreat was so welcoming and made sure every attendee felt so seen. Meals together were such a treat! The buddies would help the kids eat, so Justin and I got to talk to other parents and eat too. The chapel times and times of worship were so sweet for our hearts. All the kiddos loved to take part in leading worship, and it just felt like a slice of heaven. So many people, all with unique needs, together to worship and love on each other. There was such relief there. One that we can't fully describe - it was beautiful.
We had been aching for community like this... aching for time like this.
We cried (both in finally having time to process a lot of grief, and in crying relief/thankful-tears, we had the time and ability to just be and breathe, and our hearts had so much thankfulness.
Every person that was leading or volunteering at family retreat was so welcoming and made sure every attendee felt so seen. Meals together were such a treat! The buddies would help the kids eat, so Justin and I got to talk to other parents and eat too. The chapel times and times of worship were so sweet for our hearts. All the kiddos loved to take part in leading worship, and it just felt like a slice of heaven. So many people, all with unique needs, together to worship and love on each other. There was such relief there. One that we can't fully describe - it was beautiful.
We had been aching for community like this... aching for time like this.
We cried (both in finally having time to process a lot of grief, and in crying relief/thankful-tears, we had the time and ability to just be and breathe, and our hearts had so much thankfulness.
God really prepared the way for us to be at camp. He prepared the way for the buddies that our kiddos had loving on them all week. He prepared the way for the people we would meet and connect with.
It was such a blessing! Little did we know that the next week at home we would have 2 ambulance rides, 3 ER visits, and an emergency surgery as well. We were so thankful for this time at Family Retreat. What a huge blessing!
It was such a blessing! Little did we know that the next week at home we would have 2 ambulance rides, 3 ER visits, and an emergency surgery as well. We were so thankful for this time at Family Retreat. What a huge blessing!
(CLICK HERE) Our personal video - glimpses of our week at Family Retreat!
If you follow Joni & Friends Ministry and get their newsletters in the mail, you will see our fam this month!
Health and Life Updates:
We are so very excited to be going to camp again this year. We are praying for it to work... Isla's doctors gave the OK and encouraged us to go... as long as we bring all Isla's medical equipment and have a set plan for any urgent needs that arise. With that said, here is the current health update for Isla and our family...
We are so excited to share GOOD NEWS...
Isla was finally able to have her BiPap titrating sleep study. We had to reschedule it a few times for a couple months due to her fighting some congestion/sickness. So thankful it could finally happen!
She was SO courageous and brave and did AMAZING in the sleep study.
They were able to gain beneficial information about what levels her BiPap machine should be on.
While Isla still is hypo-ventilating and still having high Co2, HER LEVELS ARE MAINTAINING AND SHE HASN'T HAD MORE DECLINE IN 6 WEEKS!!!! This is huge!
Her BiPap is helping. To clarify because we are asked about this often, outside of a miracle, Isla's condition will not improve, but to maintain is the goal and it is happening currently!!! We praise God for that!!!
Isla's energy has been up and down; she is still in a complex difficult place, yet we are just so thankful she is maintaining and we are continuing to do all we can to help her in this place. When she has "down" days it is hard to not feel scared. We continue to take our days one at a time.
Wearing a BiPap is not easy in general, but for someone with heightened anxiety it is so hard. We are SO proud of Isla! She is being SO brave and even through anxiety, she is wearing it often.
We will be checking Co2 lab levels often yet. Her BiPap usage is being observed by her team continually and we are adjusting the levels as needed. The team does not want to increase her BiPap levels too quickly - due to her anxiety, it may cause her to be too scared to wear it. The plan is going well and we are so grateful.
Everything can shift so quickly, so we are praising God for each day.
We are so excited to share GOOD NEWS...
Isla was finally able to have her BiPap titrating sleep study. We had to reschedule it a few times for a couple months due to her fighting some congestion/sickness. So thankful it could finally happen!
She was SO courageous and brave and did AMAZING in the sleep study.
They were able to gain beneficial information about what levels her BiPap machine should be on.
While Isla still is hypo-ventilating and still having high Co2, HER LEVELS ARE MAINTAINING AND SHE HASN'T HAD MORE DECLINE IN 6 WEEKS!!!! This is huge!
Her BiPap is helping. To clarify because we are asked about this often, outside of a miracle, Isla's condition will not improve, but to maintain is the goal and it is happening currently!!! We praise God for that!!!
Isla's energy has been up and down; she is still in a complex difficult place, yet we are just so thankful she is maintaining and we are continuing to do all we can to help her in this place. When she has "down" days it is hard to not feel scared. We continue to take our days one at a time.
Wearing a BiPap is not easy in general, but for someone with heightened anxiety it is so hard. We are SO proud of Isla! She is being SO brave and even through anxiety, she is wearing it often.
We will be checking Co2 lab levels often yet. Her BiPap usage is being observed by her team continually and we are adjusting the levels as needed. The team does not want to increase her BiPap levels too quickly - due to her anxiety, it may cause her to be too scared to wear it. The plan is going well and we are so grateful.
Everything can shift so quickly, so we are praising God for each day.
Isla just completed her 3rd grade year of Home/Hospital school. We have been SO thankful for her incredible teacher Ms. C. and her amazing paras! It has not been an easy season for Isla. They have been so supportive every step of the way. We are so proud of our girl!
We are excited for summertime! Her body does not handle the heat well and is easily tired out with activity, but we still pursue that fun each day even if it is just for short amounts of time!
She LOVES the pool and would go every minute of the day if she could ;) She generally can't last too long before being too tired out, but just so thankful we can do that!
We have a lot of therapies, doctor appointments, and a lot to work on each day, but we hope to soak up family time and fun often.
Zeke is still on a health journey - Some of the treatments he has been doing are working, but just partially. There is still more to explore and try. He has more appointments ahead and he goes to physical therapy as well.
Zeke worked so very hard on this 7th grade year of school, both at home and at co-op, and finished so strong in May. We are so very proud of him!
He is enjoying more free time as his summer has already had a couple of weeks - a lot of reading, playing with friends, pool time.... Thankful for more free time to connect and enjoy the days!
He is enjoying more free time as his summer has already had a couple of weeks - a lot of reading, playing with friends, pool time.... Thankful for more free time to connect and enjoy the days!
With Isla doing fairly ok, my (molly's) health has been struggling pretty strongly. That is about how it goes. Adrenaline kicks in during the hard and when things even out a little, I crash. Would love prayer as I do a lot more appointments, imaging, testing, etc. for myself again. I am hitting some pretty big lows with my health again, and we are trying to figure it all out.... had to get more fluids last weekend and am just not feeling well. I had some new concerning imaging and would love prayer for clarity on all of that. I get pretty overwhelmed adding in so many of my own appointments. God always sustains us even through the hard.
Justin is doing fairly well... so thankful!
Days are very full of family and work at Boeing! There is a lot of stress, but he is seeking the Lord, and he lovingly reminds me God's got it on the days where I feel overwhelmed.
Father's Day is in just a few days, and we are so excited to celebrate him in that role!
Soooo deeply thankful for him!
We have been soaking up every moment of family time that we can. Quiet sweet quality time!
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| Thank you for praying for our family! |
