The kids were not happy when our much anticipated vacation to Colonial Williamsburg had to be canceled. Saturday was a long, hard day for me. I was exhausted, worried about the asthmatic one and sad for my big kids. I hate when I can not keep promises to my kids.
Saturday the big kids did really well. I had been up the majority of the night before, they played quietly while I napped. Once I was rested, we went to drop off Nesiah and Lady. I picked up chinese and a movie. We have been saving for this vacation and had not had chinese in several months so this was a huge treat.
Saturday night was awful, not only was I dealing with a sick kid, but the reality that I was going to break my kids hearts. They were going to need to give up yet another fun event.
Sunday morning I informed them that we could not go that day and possibly not at all. I was texting the lady in charge of the retreat, trying to work out details to postpone our trip.
My kids were angry and rightly so. I gave them space to deal with their emotions. We had a long chat about answered prayers and hard things in life.
See this is the thing, God has answered so many prayers for us. My friends all joke that if they want something, they will simply ask us to pray for it for them. My kids wanted to know exactly why God would not answer this prayer for healing. Did God not know that they wanted to have fun? Did God not want them to have fun?
We believe that God gives us the desires of our hearts. BUT ONLY IF THEY ALIGN WITH HIS PLAN FOR US. We believe that God is sovereign, which means that sometimes He will not give us what we want, because it is not His best for us.
We talked about dealing with accepting hard things, accepting when we don't get things we want. We hashed out why God would not give them what they/we wanted.
We talked about feeling upset and angry but not focusing on the negative.
(Several weeks ago I was at an adoption training. The trainer shared something that stuck with me. So many biological parents were not taught/given the tools to handle crisis or hard things. They do not have the ability to manage life's curve balls. We have coping skills, learned from life experiences in a healthy family. So many biological parents do not have that and when life comes at them with hard things they self medicate or self destruct)
So I decided this was a teaching moment. A time to teach and model how to handle big disappointments in life.
We also believe that when God says "no" then we need to make the best out of what we have. "Life is hard, deal with it" is one of my mantras.
So as we were discussing and venting, my friend texted me. They invited us over for lunch and snowmobile rides. The attitude in our house changed pretty quickly with that invitation. We were thankful for friends and the kids angry attitudes softened.
Sunday night was not great. I decided that it was now time to salvage this vacation.
My friend is also one who always helps me sort out life and see the light when I am drowning. She and I had a good discussion on how to salvage our vacation, how to make it fun and how to regroup.
At this point the kids were open to alternatives because really Saturday and Sunday had been fun, despite the disappointments.
So we decided to do a staycation. The only problem was, we still had the health issues to contend with. So we are taking each day as it comes. So far it has been quite fun. We made a list of things we would like to see and do, using the money put aside for the Williamsburg vacation.
Thursday, March 12, 2015
Tuesday, March 10, 2015
The Hard Things in Life..
We have had a hard year. The kids have done great with the roller coaster ride of foster care. They have learned much compassion and made many sacrifices. They love deeply and care to much.
I decided to take them on a vacation as a reward. Family vacations are a wonderful bonding time for us. We love to travel and hang out together away from the stress of every day life.
We did some research on vacations.We wanted to celebrate some pretty big deal answers to prayers, while making fun memories.
We used to go camping, but no longer can due to unbloggable illnesses.
We have to have handicapped accessible, large family accessible, single parent friendly and allergen free vacation spots. Yes, I always ask "does the room/house have new paint, new carpeting, is it smoke free and is it pet free? Does it have room for 7 people? Is it handicapped accessible? Is there room to park a 15 passenger van with a side lift? Is it a safe area for a single mom and young kids"
We found the perfect spot. A large family, homeschool retreat in Williamsburg Va. It met all my criteria. Bonus, it was educational!!
I spend hours, making arrangements for Nesiah to stay at respite, for someone to care for our animals, for someone to dog sit, for transportation for Nesiah from respite to school, and for all foster care permissions to travel. Not to mention preparing food for the week, packing all the kids and all the meds, everything but the kitchen sink!
We made costumes for the boys. The kids counted down the days.. We were soo excited. I went to great lengths to make sure that the week prior to going was to be stressfree, so I could be calm and relaxed in prepping that final packing/prep work.
First someone reacted to cat hair brought in on our little kiddoe that we babysit. We had a rough two days. Then that same someone contracted pink eye. We visited the pediatrician on Wed.
We also had 3 caseworker visits, our monthly visits, and 3 days of snow and ice.
My birthday happened too along with the biggest snow storm of the year.
Friday I called the specialist and the pediatrician the illnesses were worse.. they continued to worsen over the weekend. There was little sleeping, lots of nebulizer treatments and lots of worrying. There was even a late night, on really icy roads, trip to the ER.
so Saturday morning we made the decision to postpone our vacation. The much anticipated vacation. The kids were heartbroken, but were fervently praying that we could still leave the next day. We packed everything into the van, dropped Nesiah off with a friend and made sure everything was ready to leave first thing the next morning.
Saturday night was awful. Really awful.
Sunday morning, we decided that it still wasn't wise to travel. The kids were angry. We unpacked the van.
Monday morning I announced a change of plans... We were going to do a "staycation" instead of going to Williamsburg.
More to come...
I decided to take them on a vacation as a reward. Family vacations are a wonderful bonding time for us. We love to travel and hang out together away from the stress of every day life.
We did some research on vacations.We wanted to celebrate some pretty big deal answers to prayers, while making fun memories.
We used to go camping, but no longer can due to unbloggable illnesses.
We have to have handicapped accessible, large family accessible, single parent friendly and allergen free vacation spots. Yes, I always ask "does the room/house have new paint, new carpeting, is it smoke free and is it pet free? Does it have room for 7 people? Is it handicapped accessible? Is there room to park a 15 passenger van with a side lift? Is it a safe area for a single mom and young kids"
We found the perfect spot. A large family, homeschool retreat in Williamsburg Va. It met all my criteria. Bonus, it was educational!!
I spend hours, making arrangements for Nesiah to stay at respite, for someone to care for our animals, for someone to dog sit, for transportation for Nesiah from respite to school, and for all foster care permissions to travel. Not to mention preparing food for the week, packing all the kids and all the meds, everything but the kitchen sink!
We made costumes for the boys. The kids counted down the days.. We were soo excited. I went to great lengths to make sure that the week prior to going was to be stressfree, so I could be calm and relaxed in prepping that final packing/prep work.
First someone reacted to cat hair brought in on our little kiddoe that we babysit. We had a rough two days. Then that same someone contracted pink eye. We visited the pediatrician on Wed.
We also had 3 caseworker visits, our monthly visits, and 3 days of snow and ice.
My birthday happened too along with the biggest snow storm of the year.
Friday I called the specialist and the pediatrician the illnesses were worse.. they continued to worsen over the weekend. There was little sleeping, lots of nebulizer treatments and lots of worrying. There was even a late night, on really icy roads, trip to the ER.
so Saturday morning we made the decision to postpone our vacation. The much anticipated vacation. The kids were heartbroken, but were fervently praying that we could still leave the next day. We packed everything into the van, dropped Nesiah off with a friend and made sure everything was ready to leave first thing the next morning.
Saturday night was awful. Really awful.
Sunday morning, we decided that it still wasn't wise to travel. The kids were angry. We unpacked the van.
Monday morning I announced a change of plans... We were going to do a "staycation" instead of going to Williamsburg.
More to come...
Wednesday, February 25, 2015
Yearly Specialist Appointments
Tomorrow is our big day of medical appointments for Nesiah. She has numerous diagnoses due to her brain injury.She has an extensive team of specialist that follow her case. She currently is doing well and on maintenance with the majority of the Dr's.
She has a local GI and Neurologist that she sees every 6 months. GI is in charge of her Gtube and her weight.Her appointments are very routine, we go in we see the Dr. He askes if I have any concerns, I say no. He does a physical exam and we leave!
Neurology is in charge of her seizure meds and seizure activity. In the past 2 years there has been less and less seizure activity showing her EEG. Her Neurologist is very detailed. I love him. He has helped me get various medical referrals that she needs. He is very much on top of things.
However, we have an hour's drive to see Nesiah's Orthopedic Dr and her Ophthalmologist. We only see them once a year and we try to do both on one day. It is generally a very long day. Ophthmalogy does this testing that requires her to have painful eye drops then wait 45 minutes before doing the eye exam. She has cortical vision impairment so generally there is not much involved in this appointment. It is one of those appointments you keep just to make sure that nothing new is happening.
The big deal appointment this year is the Orthopedist. I love this team and their efficiency. We generally go in, do an xray then go over the results with the Dr. (love him), get his recommendation then leave.
Because Nesiah does not walk, her hips and the surrounding muscles do not work the way God designed them to work. For the past 2 years her hip has slowly been pulled out of it's socket. She will need a major and very painful surgery to correct this. I pray hard every year that we could go one more year without surgery. I can not imagine dealing with a 60 lb non mobile, non verbal child in a body cast for 6 weeks.
So far she has not shown any indication of pain in her hip. We would not know about the hip dislocation if we did not do the xrays. I keep in communication with the school nurse and therapists who don't believe she is in pain. So I am hoping that means we can wait another year for surgery!
We actually enjoy going to this children's hospital. In the past I have taken all the kids along, no one complained. The staff referred to them as Nesiah's entourage!
She has a local GI and Neurologist that she sees every 6 months. GI is in charge of her Gtube and her weight.Her appointments are very routine, we go in we see the Dr. He askes if I have any concerns, I say no. He does a physical exam and we leave!
Neurology is in charge of her seizure meds and seizure activity. In the past 2 years there has been less and less seizure activity showing her EEG. Her Neurologist is very detailed. I love him. He has helped me get various medical referrals that she needs. He is very much on top of things.
However, we have an hour's drive to see Nesiah's Orthopedic Dr and her Ophthalmologist. We only see them once a year and we try to do both on one day. It is generally a very long day. Ophthmalogy does this testing that requires her to have painful eye drops then wait 45 minutes before doing the eye exam. She has cortical vision impairment so generally there is not much involved in this appointment. It is one of those appointments you keep just to make sure that nothing new is happening.
The big deal appointment this year is the Orthopedist. I love this team and their efficiency. We generally go in, do an xray then go over the results with the Dr. (love him), get his recommendation then leave.
Because Nesiah does not walk, her hips and the surrounding muscles do not work the way God designed them to work. For the past 2 years her hip has slowly been pulled out of it's socket. She will need a major and very painful surgery to correct this. I pray hard every year that we could go one more year without surgery. I can not imagine dealing with a 60 lb non mobile, non verbal child in a body cast for 6 weeks.
So far she has not shown any indication of pain in her hip. We would not know about the hip dislocation if we did not do the xrays. I keep in communication with the school nurse and therapists who don't believe she is in pain. So I am hoping that means we can wait another year for surgery!
We actually enjoy going to this children's hospital. In the past I have taken all the kids along, no one complained. The staff referred to them as Nesiah's entourage!
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