Sorry for the little break. I did post on my other blog here once or twice since my last check in. Anywho, I'm back and still committed even as I listened to Gideon upstairs "crying it out". That's right, we are knee deep in sleep training and it sure does feel like a losing battle. Send sleepy vibes our way!
I was chatting with my sistier-in-law Patty this week when we got together for our bi-weekly Bible study. She was asking how things were going and I said, it feels dumb to say but I am so glad for a new month and new year, it feels like a clean slate! She agreed, saying it felt cliche to say but it feels so true. At the end of last year we got into some bad habits as a family and something about the holidays being over, school back in full swing, new year etc. I feel like I can start anew.
Back in October Gavyn had his yearly CT scan and check up with his awesome neurosurgeon - Dr.Elbabaa. It felt pretty routine going in, I didn't have any concerns about his shunt or hydrocephalus because he had no symptoms of things being wrong. Boy were we wrong! Super long story but he ended up going in for surgery and having a second shunt placed for his 4th ventricle. Maybe on another day I will come back and document that whole story. A week after surgery we all ended up passing around the stomach flu, and it was Halloween. Crazy. That is when I feel like our family went a little nuts until the end of the year. We went into major survival mode and just never got out of it until now. Seriously, that was only 3 months ago but feels like a lifetime ago. It was rough. November was full of doctor visits, Thanksgiving, family and getting ready for Christmas. Gideon has been struggling with ear infections and colds and the sleep issue has been getting worse and worse (he's still screaming upstairs by the way). I went from calm-fun-mom to psycho-mom. It felt like the kids were loud (they are) and screaming all the time, not listening to us, we were running from one thing to the next, not getting a lot of sleep, trying to have fun because it's the holidays and just ignoring the problems going on. We needed a break, we needed something to change up the routine but it never came. Christmas never felt like Christmas. It could have been from our crazy weather here, 70 one day, 40 the next, its the midwest for pete's sake, where was the snow?! But it just never felt all rosy, jolly and surely not Christ centered around here. There were a lot of time outs (for everyone), yelling, pulling my hair out and crying last month. I'm glad it's done.
Ryan and I finally had a long talk about the family and how things are getting crazy. Unfortunately, when your husband works a full time job and a part time job there are a lot of hours in the week devoted to him working. We can't change that a lot but we can change when he works. That is the plus to his part time job being freelance graphic design. He can turn down projects if he needs to and he can work when it fits into our life. We decided to try and work around that and also make more time for our family to be a family unit and cut loose a little. Somewhere in the Fall we lost our sense of having fun together. Probably because we were dealing with some really serious issues and fun wasn't a top priority. I am very hopeful for our changes though. I have felt so much calmer this week, I have made more time for myself, I have made more time for the kids, to just sit and enjoy them and be goofy with them, that is something we all really need. I keep looking at our new prospects and realizing this could be a really great year for us. I am hesitant to say we are deserving of anything (when you live in light of the Cross that is not something you can't really say) but... We have been through hell and back a few times now and I think we need a year to breath.
Friday, January 11, 2013
Tuesday, January 8, 2013
"I have a voice!"
Have you watched 'King's Speech'? When it came out a couple years ago Ryan and I went to the Moulah to see it and LOVED it. We were knee deep in trying to figure out Speech for Nevin. Oh my word, if you have a kid with a speech issue you must see this movie. For me it gives me hope in a few areas:
1. It might not be today, it might not be tomorrow, it might be when Nevin is late in his life but he will find his voice. He already is.
2. You just have to find the right people to surround yourself with and when you do, you can succeed.
3. We all have something important to do and say in our lives.
We just watched this movie again the other night and I was still super inspired. Seriously, watch it if you didn't when it came out, good gravy - go watch it again! I feel like we are finally in a sweet spot with therapists and doctors for Nevin. PSKids has been amazing with giving us great therapists to work with and our current ST there is really working hard for us. She has been on the phone with the hospital Cleft Palette team and Nevin's school more than once. She is working hard to get people on the same page and get things moving. The Affton school district has just been amazing. They too have been on the phone and busting their butts to get a plan going. At the end of last week I got a call from the ST at Cardinal Glennon who saw Nevin briefly for the Cleft team. She talked to me like a real person, someone who knew what I was talking about, listened to my frustration over ENT visits, and ended the conversation telling me we would find help for Nevin and make him better. She is on our side. Finally, someone else on our side! We get to go see her at the end of the month and are hoping beyond hope that he has made enough progress with his speech to tolerate an x-ray of his palette. If they can get enough info from that x-ray perhaps they can find the problem and go fix it. Could it be possible? Could we really be able to comprehend his speech later this year? It wells up so much hope in me that I could burst like a bubble from excitement or disappointment. He is an intelligent little boy who has overcome his share of obstacles and himself broken odds and deserves to have a voice. His old ST at PSKids would tell him every week, "Nevin, one day, you will own a corporation and I will be working for you!"
1. It might not be today, it might not be tomorrow, it might be when Nevin is late in his life but he will find his voice. He already is.
2. You just have to find the right people to surround yourself with and when you do, you can succeed.
3. We all have something important to do and say in our lives.
We just watched this movie again the other night and I was still super inspired. Seriously, watch it if you didn't when it came out, good gravy - go watch it again! I feel like we are finally in a sweet spot with therapists and doctors for Nevin. PSKids has been amazing with giving us great therapists to work with and our current ST there is really working hard for us. She has been on the phone with the hospital Cleft Palette team and Nevin's school more than once. She is working hard to get people on the same page and get things moving. The Affton school district has just been amazing. They too have been on the phone and busting their butts to get a plan going. At the end of last week I got a call from the ST at Cardinal Glennon who saw Nevin briefly for the Cleft team. She talked to me like a real person, someone who knew what I was talking about, listened to my frustration over ENT visits, and ended the conversation telling me we would find help for Nevin and make him better. She is on our side. Finally, someone else on our side! We get to go see her at the end of the month and are hoping beyond hope that he has made enough progress with his speech to tolerate an x-ray of his palette. If they can get enough info from that x-ray perhaps they can find the problem and go fix it. Could it be possible? Could we really be able to comprehend his speech later this year? It wells up so much hope in me that I could burst like a bubble from excitement or disappointment. He is an intelligent little boy who has overcome his share of obstacles and himself broken odds and deserves to have a voice. His old ST at PSKids would tell him every week, "Nevin, one day, you will own a corporation and I will be working for you!"
Monday, January 7, 2013
Scrapbooking
Yesterday was a glorious Sunday for me. My three girls from Community Group came over around 10 bearing all their crafting supplies and tasty beverages to share! We got everyone set up in my little craft room and began our projects. We heard stories about Ireland, Germany, babies, awkward moments, laughed and did not cry! Imagine that. We all accomplished a lot on our projects, took a short lunch break, drank lots of hot beverages and just encouraged and supported one another. We lived in and lived out community. It was beautiful. I was able to create about 6 beautiful pages in Gavyn's baby book and it felt good. He deserves to have a baby book filled with his memories. I have not gotten to the hospital pictures yet, that will be more difficult and the girls are ready to come back and help me through it. I was able to vent some of my feelings and have them speak some truth into it. There are so many feelings about that time that I have not shared with others and have not processed. Mostly because I don't share them and therefore get stuck in my own thoughts and can't break free. But there is a time and season for everything and I can truly see that God has ordained this time, with these girls for me to deal with some of it. I know they don't have all the answers but I can see why it is the four of us together. We all bring something different to the table and they are all dear to me.
One day at a time we keep not dying and getting up and moving.
One day at a time we keep not dying and getting up and moving.
Saturday, January 5, 2013
Control
Today was a hard day. Ryan had to get invoices ready for me to be able to prepare our tax return before February. The boys insurance comes do for renewal in February so every January we scramble to get all the paper work prepared. It's a small price to pay.
It has been a long emotional week though and having Ryan unavailable for the first part of the day was extra trying. Gavyn had his IEP evaluation in December to determine his Qualifications for Special School District. Friday was his IEP meeting where we sit down with a big group of people (6 from school, our education advocate and myself) and write the goals we would like to see Gavyn achieve over the next year. After we determine the goals we determine the best way for him to achieve those goals and there are a lot of options. As you can imagine there was a lot of stress leading up to the meeting, during the meeting, and now, anticipation for getting started. I feel good though. I love our school district, I like the teachers, I love the PT at the school and am comfortable with the OT. I know it will be good and positive but he is my baby and I do worry about him.
I also decided to try and make his baby book this week. Skyler's baby book I did in record time, Nevin's took a little longer but was done well before Gav was born. But every time I sit to do Gav's book, I flip through the pictures and well up with tears. I haven't even looked at pictures in a year, maybe longer. I finally thought I was ready. I set everything up in my craft room, I was excited, almost giddy to have a project. Then I pulled out the box of pictures, took out the stack, one by one I looked at those pictures, the more I looked the more I cried,the more I cried the angry I became. It ended with me shouting at God, "why?! Why did you do this to HIM?!" I could careless about the stress it has put on me but the fact that God allowed it to happen to him, a helpless baby, he had no choice, he was born, did nothing and almost died. But he didn't die, he survived, but with the cost of so many scars. It's not fair. It's painful. It sucks. And mostly I hate it. Tomorrow my CG girls and mom are coming over and we are going to drink yummy drinks and do that scrapbook one painful page at a time, together, and cry and make lame jokes. It will be therapy for my soul.
I realized at church tonight that I need to let go of my children. I struggling with a control idol and it has gotten really bad with my kids. There are so many things I need to "control" for them. The right school, the right therapists, the right therapy places, teachers, doctors, specialists, medicine... But, I have go too far. I have forgotten that first, they are God's children and he has in trusted them to me. They are not mine. I don't have the ultimate say. I gave my kids over to God at church tonight. I did it again when we got home. I will do it again when I open my eyes and probably 100 times tomorrow. I need to post it on the bathroom mirror. I want to be free this year and by becoming free I must let go of my grip on my life.
It has been a long emotional week though and having Ryan unavailable for the first part of the day was extra trying. Gavyn had his IEP evaluation in December to determine his Qualifications for Special School District. Friday was his IEP meeting where we sit down with a big group of people (6 from school, our education advocate and myself) and write the goals we would like to see Gavyn achieve over the next year. After we determine the goals we determine the best way for him to achieve those goals and there are a lot of options. As you can imagine there was a lot of stress leading up to the meeting, during the meeting, and now, anticipation for getting started. I feel good though. I love our school district, I like the teachers, I love the PT at the school and am comfortable with the OT. I know it will be good and positive but he is my baby and I do worry about him.
I also decided to try and make his baby book this week. Skyler's baby book I did in record time, Nevin's took a little longer but was done well before Gav was born. But every time I sit to do Gav's book, I flip through the pictures and well up with tears. I haven't even looked at pictures in a year, maybe longer. I finally thought I was ready. I set everything up in my craft room, I was excited, almost giddy to have a project. Then I pulled out the box of pictures, took out the stack, one by one I looked at those pictures, the more I looked the more I cried,the more I cried the angry I became. It ended with me shouting at God, "why?! Why did you do this to HIM?!" I could careless about the stress it has put on me but the fact that God allowed it to happen to him, a helpless baby, he had no choice, he was born, did nothing and almost died. But he didn't die, he survived, but with the cost of so many scars. It's not fair. It's painful. It sucks. And mostly I hate it. Tomorrow my CG girls and mom are coming over and we are going to drink yummy drinks and do that scrapbook one painful page at a time, together, and cry and make lame jokes. It will be therapy for my soul.
I realized at church tonight that I need to let go of my children. I struggling with a control idol and it has gotten really bad with my kids. There are so many things I need to "control" for them. The right school, the right therapists, the right therapy places, teachers, doctors, specialists, medicine... But, I have go too far. I have forgotten that first, they are God's children and he has in trusted them to me. They are not mine. I don't have the ultimate say. I gave my kids over to God at church tonight. I did it again when we got home. I will do it again when I open my eyes and probably 100 times tomorrow. I need to post it on the bathroom mirror. I want to be free this year and by becoming free I must let go of my grip on my life.
Friday, January 4, 2013
Commitment
I am not sure where or how to start this blog. I have been reading a lot of blogs from other moms who have special needs kiddos, some with autism, some with speech delay, others with downs syndrome, and the bottom line is this: it is good for my heart to read them. I have felt very isolated for almost 3 years now and just plain weird to people we meet or people we have known. Our life went from a normal family of 4 to a family of 5 with two special needs kiddos over night and now a family of 6. A lot of issues I thought I had dealt with came pouring back out of me just this week as I looked through Gavyn's baby photos that are yet to be put into an album. I never made his baby book because it was too emotional for me. I thought I was in a good place to do it and process it. I realized I'm not. I am not healed, I am not OK. I have an amazing community group though because the girls are going to come and we are having a scrapbooking partying that I am allowed to totally cry through it while I process Gavyn, again. Its a place to start. And that brings me back to the beginning of this. I realized there is still more story to tell and it might do another mom good to read what we go through. It could be different than her life or it could be strangely familiar, either way, it is good for me to write and it might be good for someone to read. I am not a resolution maker but I want to try and post something every day on here. Even if it is just my high and low for the day. Some days may be profound and others may be sad but I need to do this. I need to keep pressing on in our story and I need to keep processing it. This blog will move beyond just Gavyn and include Nevin's struggles as well and our families struggles. Process with me as I again pick this back up and keep trying to move into a better place for my heart, soul and family.
Monday, July 16, 2012
summer
This Summer has been so different for Gav and all in good ways. He has a few minor scensory issues that can hold him back until he learns its ok. Like being outside for instance. Last year he hated going outside because he hated the grass. This year it is not a problem! He is ripping it up outside with his brothers! Going down the slide, climbing the ladder, swinging, using his walker to chase his brothers. He is having a blast. Tonight he went to the shrewsbury pool and not only got in the water but did not cry once and really had a good time. Kicking, splashing, lazy river. So different from last year. He just continues to make huge strides.
Friday, June 22, 2012
Toddling
Mr. Gavyn has really turned into a toddler over the last month. We are moving away from using "walk walk" as he likes to call his medical walker. He is still using a little push walker or holding your hand for the most part. In the last week though he has gotten way braver about taking more and more independent steps. It is exciting for the whole family to see him walk from the couch to the ottoman or table to me or Ryan. We all cheer him on and he knows he is hot stuff. Mostly now it is a mind over matter issue for him. Physically he can do it and everyone knows it but him. That is always the last battle for him in over coming obsticals. Isn't it for everyone? Once we build his confidence he will take off and being outside chasing his brothers by the end of fall. He is also conquering climbing. He has been climbing the stairs for about a year now but recently he has figured out getting on the ottoman and up into Nevin's toddler chair! The couch and chair are still a little high for his short little legs but he will be there soon enough. He keeps moving in the right direction and every week brings new adventures.
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