Thursday, August 29, 2013
First Day of School
It's a new school year & this momma is excited! It was an extra long summer being home with 4 kids but we all survived each other. I loved getting to spend time to bond with Noah and we had fun doing all our summer activities but I am so ready to send them off for 7 hours a day & enjoy some things I like. This year all 4 will be in school most of the time. Madison is a 9th grader & in her first year of high school! I can't believe it. She is taking a full load with 4 AP classes, sign language, art, & dancing on the drill team. It's going to be a busy year for her but I think she's going to enjoy it. Gage is in 3rd grade. I am nervous about this year & praying he can stay focused so we don't have to look into starting him on ADHD medication. He is an A/B student so as long as he can keep that up, we will wait on medication. He has a sweet teacher this year & I hope they work well together. Noah is at a different school than Gage & Autumn. He is in the FA2 program which is not offered at the school the other 2 attend. FA stands for Functional Academics which is a class for kids with special needs that need a little extra help with school. He started kindergarten this year. He will also do inclusion with the regular kinder kids. He will go to lunch & specials (PE,music,art) with them as well as spend a set amount of time in their classroom. His classroom only has 5 students so he will get a lot of extra help learning & hopefully one day he will no longer be behind or need to be in the FA programs. He will also receive speech therapy again this year at school. He did not do well on the first day but day 2 & 3 went great. He does much better when he rides the bus to school & mommy does not take him so we will stick to that plan. Autumn is in her 3rd year of the PPCD program but her 2nd year of pre-k. She also does inclusion with the regular pre-k kids for an hour a day & then the rest of the day she is in her PPCD classroom learning. She will continue to have OT,PT, & speech therapy at school as well. We are also doing OT & feeding therapy outside of school. Autumn will go 4 days a week for 5 hours a day this year & Mondays we do private therapy. So, we have lots of busy kids to keep up with this year. The nice thing is they all leave & arrive home at different times. Noah gets on the bus at 7am, I drive Gage to school at 7:30am, take Madison to school at 8:15am & then Autumn gets on the bus at 8:40am. Autumn is the first home at 2:10pm, Noah gets home at 3:15pm, Gage arrives about 5 mins later, & then I leave to pick up Madison at 3:30pm. It works out really well. James also started his new day shift schedule this week. YAY!!! I am super excited about him working days, even though he is not. He will be off Mon-Wed & then work Th-Su from 6:30am-4:30pm. It stinks he will still work weekends but now we will get to see each other more during the week & without kids requesting our attention every 2 minutes. James is not thrilled to be working days in the Texas heat but he can just get over it. For 10 years, he has worked evening/night shifts so I think it's about time we get it MY way for 6 months. I'm excited that on weekends I don't have to constantly yell at kids for playing too loudly. I get to fall asleep next to my husband & actually talk with him during the day. I can clean our room & bathroom whenever I want & not have to wait until the evenings. There is just so many things I am looking forward to. Like holidays, we don't have to rearrange everything to work around his sleeping schedule. It's going to be awesome, I just know it & James will eventually see it too ;) This week has been an adjustment with him trying to switch his body from sleeping days instead of nights so he has been extremely tired & not sleeping much. Today was his first day to actually work & he was suppose to wake up at 5:30am but woke up at 2am instead so it's going to be a long day for him. I am also trying to get use to having him in bed with me so it's been hard for me to fall asleep to his snoring. It's kind of like we are newlyweds again learning each other's sleeping habits. Now that he will be working days, I am on Autumn duty 2 nights a week. We only have enough nursing hours to cover Autumn's school times & then 5 nights a week so I'm left to do the other nights (James would help but he sleeps too heavy to hear her machines go off like I can). I am adjusting to waking up several times a night to check a beep or empty her water trap on her vent circuit (has to be emptied every 4 hours). It's okay though since we get to have James on a daytime schedule with the family. I think this is going to be another fun & extremely busy school year for us! Here are some first day of school pictures. The last one is just a cute one of Autumn & Noah "playing together". 
Sunday, August 4, 2013
God's Will, Not Mine
Let me start by letting you know we all made it back to church last night for the first time in 3 months (since Noah arrived home). Nursing issues. I was nervous how Noah would do but he did AWESOME!! Our church has a special needs room so we decided to take him there (felt a regular classroom would be too overwhelming for him & he would be too active focus). He did not cry when we dropped him off & was not ready to go when we picked him up! Shows me he is secure in knowing we will return for him. I also want to let you know Noah is 100% potty trained...day & night.
Anyways, God put us back in church on the perfect day. The sermon was about God's Will, not ours. I have been struggling with accepting God's Will in my life for 4 years now & this sermon just sealed the deal for me. God has been working to change me for years now, I am a strong-willed individual & I put up a huge fight before I will give in. This battle with God over the past 4 years has been an exhausting one. The day we found out Autumn had SB, we were saddened but honestly we were praising God it was only going to affect her legs & not her mind. It did not bother me that my daughter may never walk. Walking is just overrated in my eyes. Many people in wheelchairs live happy lives. I knew she would have struggles & miss out of some things in life but she could still live a normal life. It was after she was born that I was hit with the realization that Autumn was going to have more issues. I hated her trach but loved it at the same time. Without it, she would die but with it changed our lives dramatically. I was angry but blessed at the same time. Thankful she was alive but mad that we all had to change our lives because of it. We gave up our pets, we had to welcome strangers being on our home daily, I could not shower when I wanted or jump in the car to take my kids grocery shopping. My independance was gone & I was angry. I pride myself in being an independant woman & now I was having to rely on people 24/7 to help me. I prayed nightly God would heal Autumn from needing her trach so life could get back to being fairly normal. At this time Autumn was developing normally but then the seizure came when she was about 12 months old that I feel like changed Autumn forever. She stopped eating, stopped signing, & stopped developing normal. Years went by & she has grown & developed but it has become obvious that Autumn will always need our help for her care. We moved here & life got even harder. There is so much to do in the Dallas area but Autumn can not do most of it because of either anxiety or heat. Not only is it hard at times to take her places but she honestly could care less to go with us. This frustrated me! I wanted to be a normal family who could take all my kids to the zoo & we have a good time. I would force outings but Autumn would be miserable & so would my other kids. I would compare her to other SB kids & be sad she was not like them. I would get mad listening to them complain that their child could not walk when my could not even breathe or talk. I would ask God how is this fair? We were ok with Autumn not walking & then you gave us more & these other parents can not even accept that their kid can not walk. I had this idea that if I was not complaining about her not walking, why give me more & then these parents who could not even appreciate their children that can breathe & talk are complaining about something we were ok with. Like we deserved to have it better because we accepted it. God slowly started to show me I was no different...there were parents looking at me saying the same thing, that at least your child is with you & theirs had been taken away from them & they would give anything to have what I have. I struggled to accept this path God gave us & just wanted to Him to change it. I did not want to sacrifce all He has asked us to. I did not want my other kids to have to sacrifice stuff because of Autumn either. I just wanted to feel normal again & my kids to have a normal childhood. I would frequently give myself pity parties. I wished for that old life back. The days when I did not have to deal with nursing agency, dr. appts, DME companies, therapy, ARD's, nurses. The days I did not have to worry about childcare just so I can take a shower or run to the grocery store. The days when we could just go somewhere as a family without me feeling sad because I had to leave one child at home. The times I could be involved in church & the kids school without having to make sure I have nursing scheduled or have to cancel because of a dr appt, therapy, or a nurse called in. The days I could just find anyone to watch my kids & they did not have to be a trained nurse. The days my kids could be in activities & not have to miss out because I do not have anyone to care for Autumn. Being able to play with my kids without being interrupted by a child who has stopped breathing. The days James & I could both ride in the front seats of the car. The days both James & I could attend children's functions together & not needing one to stay home with Autumn. There is SO much that has changed in our lives & that we took for granted before Autumn arrived. I would pray nightly God would heal Autumn's brain so she would be trach free, she can communicate with us, & she could be cognitively normal. I finally started to pray if this is not His will that He then change me to accept it. It has taken a LONG time but God finally started answering my prayers. He has not healed or changed Autumn & has not allowed my will be to done but He has changed me to accept His will. The acceptance started in February when James & I took our first trip away from Autumn. To say I had anxiety would be an understatement. I was terrified. Although, the trip was nice it was not as wonderful as it could of been. I worried about Autumn the entire time. I was convinced God would take her away from me while I was gone or that James & I would die & my kids would be left without us. First our cruise was cancelled & then our car broke down on the way to the airport so I just knew this was God telling me not to go. James pointed out it was Satan trying to stop us because we needed the break away together & we needed to trust God. I went on the trip, had lots of anxiety, but did trust God. We came home & everything was fine! This was a HUGE eye opener for me. Life can go on & God does not have to change our situation, I just have to let him to change my view of it. I finally felt freedom in this new life. I realized I needed to stop fighting against God's will & start living for it. My kids & I can still do things without me feeling guilty that Autumn is home. I can committ to things & it's ok if I have to cancel because of Autumn (I am the perfectionist type who feels if I can not give 100% of myself then I will just not give at all). It is okay for me to accpet Autumn how she is & I don't have to feel guilty if I am not striving to change her. It is ok that God made her to be 100% dependant on us for the rest of her life. It will be ok if I never get to hear her say, "I love you mommy." The sermon last night talked about "stupid theology" that some Christains have about life, that it will always be happy, healthy, & good if we are Christains. God never promised that...in fact, He warned us we would have struggles. When Jesus was sweating drops of blood because He was full of anxiety about the death He was about to endure...he prayed for His desire for God to take it away but ended by saying to God, "Your will be done." If God had answered Jesus' prayer for His desire then we as Christains would not be saved from our sins & would endure the life we all deserve in Hell. It was only because Jesus made sure to ask for God's will above all else to be done that we as Christians can live in eternity with him. God is more than capable to making Autumn completely normal tomorrow & my faith believes He would if he willed it but instead His will is for us to accept the path he made for us & rejoice in it. Hearing that sermon just assured me that acceptance & sacrifice is what God is asking of me. After the sermon, James taught our life group about never being in rest here on Earth because our rest comes in heaven. We should be giving our all to God every day! Hearing that just gave me the strength to know that living out the will of God is allowing me to always rely on God's strength to perserve through this difficult journey He has for us. If God changed Autumn, I think he knows I would become complacent & just rest in this life & not live the life He has called me to live. Autumn allows me to always rely on His strength daily & to always have hope to see her healing when we are in heaven. I wanted God to give me all my hopes & desires for Autumn on Earth but how much more wonderful is it that I get to experience what it's like to really rely on God daily to get through this challenging life & that for eternity I will get to experience Autumn with a healed body & mind. God is good ALL the time...it just takes some us (me) more time to realize it than others.
Anyways, God put us back in church on the perfect day. The sermon was about God's Will, not ours. I have been struggling with accepting God's Will in my life for 4 years now & this sermon just sealed the deal for me. God has been working to change me for years now, I am a strong-willed individual & I put up a huge fight before I will give in. This battle with God over the past 4 years has been an exhausting one. The day we found out Autumn had SB, we were saddened but honestly we were praising God it was only going to affect her legs & not her mind. It did not bother me that my daughter may never walk. Walking is just overrated in my eyes. Many people in wheelchairs live happy lives. I knew she would have struggles & miss out of some things in life but she could still live a normal life. It was after she was born that I was hit with the realization that Autumn was going to have more issues. I hated her trach but loved it at the same time. Without it, she would die but with it changed our lives dramatically. I was angry but blessed at the same time. Thankful she was alive but mad that we all had to change our lives because of it. We gave up our pets, we had to welcome strangers being on our home daily, I could not shower when I wanted or jump in the car to take my kids grocery shopping. My independance was gone & I was angry. I pride myself in being an independant woman & now I was having to rely on people 24/7 to help me. I prayed nightly God would heal Autumn from needing her trach so life could get back to being fairly normal. At this time Autumn was developing normally but then the seizure came when she was about 12 months old that I feel like changed Autumn forever. She stopped eating, stopped signing, & stopped developing normal. Years went by & she has grown & developed but it has become obvious that Autumn will always need our help for her care. We moved here & life got even harder. There is so much to do in the Dallas area but Autumn can not do most of it because of either anxiety or heat. Not only is it hard at times to take her places but she honestly could care less to go with us. This frustrated me! I wanted to be a normal family who could take all my kids to the zoo & we have a good time. I would force outings but Autumn would be miserable & so would my other kids. I would compare her to other SB kids & be sad she was not like them. I would get mad listening to them complain that their child could not walk when my could not even breathe or talk. I would ask God how is this fair? We were ok with Autumn not walking & then you gave us more & these other parents can not even accept that their kid can not walk. I had this idea that if I was not complaining about her not walking, why give me more & then these parents who could not even appreciate their children that can breathe & talk are complaining about something we were ok with. Like we deserved to have it better because we accepted it. God slowly started to show me I was no different...there were parents looking at me saying the same thing, that at least your child is with you & theirs had been taken away from them & they would give anything to have what I have. I struggled to accept this path God gave us & just wanted to Him to change it. I did not want to sacrifce all He has asked us to. I did not want my other kids to have to sacrifice stuff because of Autumn either. I just wanted to feel normal again & my kids to have a normal childhood. I would frequently give myself pity parties. I wished for that old life back. The days when I did not have to deal with nursing agency, dr. appts, DME companies, therapy, ARD's, nurses. The days I did not have to worry about childcare just so I can take a shower or run to the grocery store. The days when we could just go somewhere as a family without me feeling sad because I had to leave one child at home. The times I could be involved in church & the kids school without having to make sure I have nursing scheduled or have to cancel because of a dr appt, therapy, or a nurse called in. The days I could just find anyone to watch my kids & they did not have to be a trained nurse. The days my kids could be in activities & not have to miss out because I do not have anyone to care for Autumn. Being able to play with my kids without being interrupted by a child who has stopped breathing. The days James & I could both ride in the front seats of the car. The days both James & I could attend children's functions together & not needing one to stay home with Autumn. There is SO much that has changed in our lives & that we took for granted before Autumn arrived. I would pray nightly God would heal Autumn's brain so she would be trach free, she can communicate with us, & she could be cognitively normal. I finally started to pray if this is not His will that He then change me to accept it. It has taken a LONG time but God finally started answering my prayers. He has not healed or changed Autumn & has not allowed my will be to done but He has changed me to accept His will. The acceptance started in February when James & I took our first trip away from Autumn. To say I had anxiety would be an understatement. I was terrified. Although, the trip was nice it was not as wonderful as it could of been. I worried about Autumn the entire time. I was convinced God would take her away from me while I was gone or that James & I would die & my kids would be left without us. First our cruise was cancelled & then our car broke down on the way to the airport so I just knew this was God telling me not to go. James pointed out it was Satan trying to stop us because we needed the break away together & we needed to trust God. I went on the trip, had lots of anxiety, but did trust God. We came home & everything was fine! This was a HUGE eye opener for me. Life can go on & God does not have to change our situation, I just have to let him to change my view of it. I finally felt freedom in this new life. I realized I needed to stop fighting against God's will & start living for it. My kids & I can still do things without me feeling guilty that Autumn is home. I can committ to things & it's ok if I have to cancel because of Autumn (I am the perfectionist type who feels if I can not give 100% of myself then I will just not give at all). It is okay for me to accpet Autumn how she is & I don't have to feel guilty if I am not striving to change her. It is ok that God made her to be 100% dependant on us for the rest of her life. It will be ok if I never get to hear her say, "I love you mommy." The sermon last night talked about "stupid theology" that some Christains have about life, that it will always be happy, healthy, & good if we are Christains. God never promised that...in fact, He warned us we would have struggles. When Jesus was sweating drops of blood because He was full of anxiety about the death He was about to endure...he prayed for His desire for God to take it away but ended by saying to God, "Your will be done." If God had answered Jesus' prayer for His desire then we as Christains would not be saved from our sins & would endure the life we all deserve in Hell. It was only because Jesus made sure to ask for God's will above all else to be done that we as Christians can live in eternity with him. God is more than capable to making Autumn completely normal tomorrow & my faith believes He would if he willed it but instead His will is for us to accept the path he made for us & rejoice in it. Hearing that sermon just assured me that acceptance & sacrifice is what God is asking of me. After the sermon, James taught our life group about never being in rest here on Earth because our rest comes in heaven. We should be giving our all to God every day! Hearing that just gave me the strength to know that living out the will of God is allowing me to always rely on God's strength to perserve through this difficult journey He has for us. If God changed Autumn, I think he knows I would become complacent & just rest in this life & not live the life He has called me to live. Autumn allows me to always rely on His strength daily & to always have hope to see her healing when we are in heaven. I wanted God to give me all my hopes & desires for Autumn on Earth but how much more wonderful is it that I get to experience what it's like to really rely on God daily to get through this challenging life & that for eternity I will get to experience Autumn with a healed body & mind. God is good ALL the time...it just takes some us (me) more time to realize it than others.
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