Forgive me, Readers. I have slacked. It has been nearly 4 months since my last blog.
*Sigh* I always get ideas for blogging in the middle of the night, riding in the van, or when I'm having discussions with people. But when I'm actually sitting in front of my computer while Grace is napping, I get spaced out on Facebook or reading a book or checking the news. Today is really no different. Grace is sleeping, Aaron is mowing the lawn and trying to tame the jungle that is our backyard. But today I'm bored. And being bored is a dangerous territory for me. I'm bored b/c I'm feeling like I'm paralyzed. Technically, I AM paralyzed, but I usually don't feel like it. Usually I have a lot of things to occupy myself with. Phone calls, emails, directing Santina, playing w/ Grace. Today there are a million things I want to do, but can't. I want to clean my house; organize Grace's toys; organize her closet; make cookies; do the laundry; fill up Grace's pool; fill up her new sandbox; pull weeds; trim bushes; cut flowers; touch up the paint; take Grace for a walk; you get the idea. I want to MOVE and do things with MY body and not just tell someone else to do those things. So you see...this is why being bored is dangerous for me. I start feeling closed in, claustrophobic, trapped in a cage with the door OPEN, panicked. I start trying to do silly things- like standing up. I remember what it's like to stand and walk and stretch. I remember the feeling of muscles relaxing and contracting...of my hamstrings and calves and hips and thighs and shins and ankles and bending my knees. Reaching my arms over my head and stretching- making a fist- my biceps, triceps, forearms, wrists, palms and fingers. But remembering those feelings doesn't help. I still can't move. I try to keep my mind occupied... at peace. And usually I am. Really. I have a great sense of peace and contentment almost all the time. But boredom can bring this stuff to the surface quicker than anything.
I hate complaining, grumbling and whining. And I hate feeling like I want to do those things. And for some reason when I start feeling all whiny, THAT'S when I want to blog. Maybe it's the need to be heard...the need to vent...the need to be patted on my back and told everything's gonna be alright.
I know it is. Everything is ok. Better than ok. It's actually pretty great. I have a great marriage. That alone is amazing. So many people are miserable in their marriages. But Aaron and I just always have a way of working things out and doing life and being silly together that I think is kind of rare. I also have the sweetest, cutest, LOUDEST, most adorable, kissable, squeezable, and most loving daughter in Grace. It just doesn't get better than that. It makes all that physical paralysis stuff fade into the background.
God cares about me. For real. And I always feel close to God when I start venturing into dangerous territory in my mind. He helps me walk through that without feeling alone. He never leaves me or turns his back on me.
So now, at the end of this blog, I have a profound sense of gratitude and peace. Thank you, God.
Maybe I'll have Aaron get me some ice cream. :)
Saturday, September 22, 2012
Thursday, May 24, 2012
Camping Adventures
I haven't been doing a very good job of writing consistently on my little blog here. We've had so much going on and my days are so full that when I do get some down time I just want to mindlessly cruise Facebook or read. Currently, I'm trying to fight off an annoying little virus that is making the rounds through our household. Grace had it the least, for which I am very thankful. Aaron has had it the longest simply b/c he doesn't get enough rest. And I get it the "worst" b/c I can't cough on my own or blow my own nose. And that's just gross.
Last week Grace had 6 immunizations at one time. If I had to do it over, I never would have done this. She has been a mess. So so so fussy and whiny and screamy- totally not her personality. She is napping terribly which is no fun for anybody. I'm not positive this is due to the shots, but it's the only thing I can point to. Anyway, I'm really hoping this wears off soon b/c it's getting old and it's hard to see her so sad.
So.....Last weekend we went camping at Crystal Cove State Park in Newport Beach. It was amazing. Our campsite was on a bluff overlooking the ocean. We have camped in so many places in the last 10 years, but this was the most beautiful. It was between 65-75 degrees w/ a great coastal breeze and sunny. The only disappointing thing was not being able to get on the actual beach. My wheelchair won't go through sand that deep. But there were some great accessible trails through a wilderness area that we are looking forward to exploring later. Grace did pretty well in spite of her fussiness. I don't think our camping neighbors were too thrilled to have us next to them, but we just smiled and waved. :)
Many of you have asked how we camp. Well, we camp in a tent..."The GigaTent"... it has a 10x10 floor with a center height of just over 7 feet. Aaron can stand straight up in nearly the whole tent. It has a front and rear entrance w/ two giant D-shaped doors. I can drive into the tent in my wheelchair. There is a threshold in the doorway, so we let it slack just a little and we lay down a towel to smooth it out and my chair can cross over w/out ripping the tent w/ my wheels. I sleep on the floor using a 3" Thermarest mattress and my 0-degree sleeping bag. (I get cold :) at night). We transfer me from my chair to my bed using our lift. Our lift is awesome. It's battery operated and is collapsible so it's easy to transport in our van. The lift will lower me all the way to the floor. We maneuver the mattress under the lift and Aaron positions me after he moves the wheelchair out of the way. He locks the wheelchair in the van overnight. Aaron sleeps next to me on his own mattress and Grace has a tiny mini-tent (called a PeaPod) that she sleeps in in the corner of our tent. This summer when Santina is with us she will have her own tent. Of course Aaron does all the cooking and set-up and tear-down. It IS a big job, but he enjoys it. Especially the cooking part. We can't believe that we never tried camping before this. It's really quite easy, all things considered. The hardest part is keeping Grace quiet all night! I think we always thought we would need all this special adaptive equipment. That stuff is available but it's VERY expensive. Overpriced, really. But we did a lot of research and were able to just get normal stuff and make it work for us. It takes us a long time to do everything, mostly b/c Aaron has to do everything by himself. I always feel like people would get annoyed camping w/ us b/c we are much "slower" than a normal family. So if you're a person who likes to DO everything possible while camping, don't come with us. :) We take it easy and just try to enjoy being outdoors. Camping at the beach was great b/c we had an amazing view the whole time and didn't feel like we were missing out on 'activities'. Anyway, we LOVE it! We are camping in Yellowstone and Oregon in July; Yosemite in August; and just reserved another weekend at Crystal Cove in September.
I'm thinking about having Santina videotape our campsite and our procedure of camping this summer in Yellowstone. I want to put it on YouTube or something so other disabled people can see how easy it really is. I think people sometimes feel like they have to give up stuff like camping when they are disabled. But really you just have to be creative. :)
Ok...signing off now. Thanks for reading about our adventures!
Last week Grace had 6 immunizations at one time. If I had to do it over, I never would have done this. She has been a mess. So so so fussy and whiny and screamy- totally not her personality. She is napping terribly which is no fun for anybody. I'm not positive this is due to the shots, but it's the only thing I can point to. Anyway, I'm really hoping this wears off soon b/c it's getting old and it's hard to see her so sad.
So.....Last weekend we went camping at Crystal Cove State Park in Newport Beach. It was amazing. Our campsite was on a bluff overlooking the ocean. We have camped in so many places in the last 10 years, but this was the most beautiful. It was between 65-75 degrees w/ a great coastal breeze and sunny. The only disappointing thing was not being able to get on the actual beach. My wheelchair won't go through sand that deep. But there were some great accessible trails through a wilderness area that we are looking forward to exploring later. Grace did pretty well in spite of her fussiness. I don't think our camping neighbors were too thrilled to have us next to them, but we just smiled and waved. :)
Many of you have asked how we camp. Well, we camp in a tent..."The GigaTent"... it has a 10x10 floor with a center height of just over 7 feet. Aaron can stand straight up in nearly the whole tent. It has a front and rear entrance w/ two giant D-shaped doors. I can drive into the tent in my wheelchair. There is a threshold in the doorway, so we let it slack just a little and we lay down a towel to smooth it out and my chair can cross over w/out ripping the tent w/ my wheels. I sleep on the floor using a 3" Thermarest mattress and my 0-degree sleeping bag. (I get cold :) at night). We transfer me from my chair to my bed using our lift. Our lift is awesome. It's battery operated and is collapsible so it's easy to transport in our van. The lift will lower me all the way to the floor. We maneuver the mattress under the lift and Aaron positions me after he moves the wheelchair out of the way. He locks the wheelchair in the van overnight. Aaron sleeps next to me on his own mattress and Grace has a tiny mini-tent (called a PeaPod) that she sleeps in in the corner of our tent. This summer when Santina is with us she will have her own tent. Of course Aaron does all the cooking and set-up and tear-down. It IS a big job, but he enjoys it. Especially the cooking part. We can't believe that we never tried camping before this. It's really quite easy, all things considered. The hardest part is keeping Grace quiet all night! I think we always thought we would need all this special adaptive equipment. That stuff is available but it's VERY expensive. Overpriced, really. But we did a lot of research and were able to just get normal stuff and make it work for us. It takes us a long time to do everything, mostly b/c Aaron has to do everything by himself. I always feel like people would get annoyed camping w/ us b/c we are much "slower" than a normal family. So if you're a person who likes to DO everything possible while camping, don't come with us. :) We take it easy and just try to enjoy being outdoors. Camping at the beach was great b/c we had an amazing view the whole time and didn't feel like we were missing out on 'activities'. Anyway, we LOVE it! We are camping in Yellowstone and Oregon in July; Yosemite in August; and just reserved another weekend at Crystal Cove in September.
I'm thinking about having Santina videotape our campsite and our procedure of camping this summer in Yellowstone. I want to put it on YouTube or something so other disabled people can see how easy it really is. I think people sometimes feel like they have to give up stuff like camping when they are disabled. But really you just have to be creative. :)
Ok...signing off now. Thanks for reading about our adventures!
Monday, April 30, 2012
Thankful
Hello dear ones-
Thank you for all of your kind thoughts, words, prayers, etc. It appears that I made several of you cry! :) Sorry about that! However, I do want to make sure that you all don't think I'm miserable!
In spite of my frustrations over my physical limitations, I am very thankful for the abilities I do have and for those around me who sacrifice a lot every day just to help me be a mommy. Being the list-maker that I am, I decided to make a list of those things I am thankful for (in no particular order):
1. Aaron. My amazing husband who is also a father, teacher, cook, chauffeur, housekeeper, handyman, gardner, nurse, musician, political commentator, jungle gym, sports analyst, photographer...I could go on! He not only does all these things, but he does it with joy. Ephesians 5.25 says, "Husbands, love your wives, just as Christ loved the church and gave himself up for her." Aaron demonstrates this every single day. I'm really amazed by his attitude. He's a total goof ball with a great sense of adventure...both of those being very important attributes in our unique situation!
2. Grace. My darling daughter. Every moment I spend with her is joy. Watching her grow and learn and interact. We sing together and play peek-a-boo and do our special wave and play tug-of-war and read books and go for rides in my wheelchair and do butterfly kisses and eskimo kisses. I was even able to breastfeed her for a full year. Even though there are physical obstacles for me, we still interact in so many ways. I can actually do WAY more than I thought I'd be able to...and have become very creative! :)
3. Santina. My faithful caregiver. She is one of the most dependable, hardest-working people I've ever known. She shows up every single day, never complains, and is so easy to have around. Grace loves her. Santina interacts really well with her. Santina also gives me room to be Grace's mommy. If Grace cries, Santina brings her to me. She gives me room to make every decision- no matter how small. It's nice. She truly is my hands and feet. I appreciate her so much. She also has a great sense of humor and is a goof ball like me and Aaron. :) I love her!
I think I'm going to continue this thankful list in another blog. I type one key at a time with a stick in my mouth so my neck and jaw get tired after I type a lot.
So with a tired jaw, but a thankful heart, I'm signing off for today!
Thank you for all of your kind thoughts, words, prayers, etc. It appears that I made several of you cry! :) Sorry about that! However, I do want to make sure that you all don't think I'm miserable!
In spite of my frustrations over my physical limitations, I am very thankful for the abilities I do have and for those around me who sacrifice a lot every day just to help me be a mommy. Being the list-maker that I am, I decided to make a list of those things I am thankful for (in no particular order):
1. Aaron. My amazing husband who is also a father, teacher, cook, chauffeur, housekeeper, handyman, gardner, nurse, musician, political commentator, jungle gym, sports analyst, photographer...I could go on! He not only does all these things, but he does it with joy. Ephesians 5.25 says, "Husbands, love your wives, just as Christ loved the church and gave himself up for her." Aaron demonstrates this every single day. I'm really amazed by his attitude. He's a total goof ball with a great sense of adventure...both of those being very important attributes in our unique situation!
2. Grace. My darling daughter. Every moment I spend with her is joy. Watching her grow and learn and interact. We sing together and play peek-a-boo and do our special wave and play tug-of-war and read books and go for rides in my wheelchair and do butterfly kisses and eskimo kisses. I was even able to breastfeed her for a full year. Even though there are physical obstacles for me, we still interact in so many ways. I can actually do WAY more than I thought I'd be able to...and have become very creative! :)
3. Santina. My faithful caregiver. She is one of the most dependable, hardest-working people I've ever known. She shows up every single day, never complains, and is so easy to have around. Grace loves her. Santina interacts really well with her. Santina also gives me room to be Grace's mommy. If Grace cries, Santina brings her to me. She gives me room to make every decision- no matter how small. It's nice. She truly is my hands and feet. I appreciate her so much. She also has a great sense of humor and is a goof ball like me and Aaron. :) I love her!
I think I'm going to continue this thankful list in another blog. I type one key at a time with a stick in my mouth so my neck and jaw get tired after I type a lot.
So with a tired jaw, but a thankful heart, I'm signing off for today!
Thursday, April 26, 2012
Here we go...
I have so many random thoughts running through my head. I'm not sure how to organize them into this blogging endeavor. Not sure what's important. Blogging is kind of like journaling, except anyone can read it. I suppose it's a way of seeking to be understood. I guess that's what I need. I don't really know anyone in my situation. The isolation I feel is sometimes extreme. That's not always a bad thing- it's just a fact that I have to deal with. At times it makes me sad, but usually I just accept it. So in this blog I'm going to be selfish. It's not really for anyone but me. I'm going to share my thoughts, struggles, victories, failures...whatever. If it's encouraging or "inspirational" to anyone then I guess that's an added bonus. But mostly I just want to write about this season of my life. I wish I had done this a year ago. Grace's first year of life was such a blur. She has grown and changed so much and I feel like we've lost so much time in not recording every single minute milestone. Her baby book is shamefully blank. Fortunately, I "status-updated" many of her milestones on Facebook. I want my daughter to know someday the extreme JOY that she brings to me every single day. She is so beautiful. Right now she is sitting on the floor next to me clapping two plastic blocks together and babbling away. Every few seconds she looks at me and smiles. I want so badly to get up out of this cursed wheelchair and sit on the floor w/ her and play blocks with her. I want to actually hold her little toes in my fingers when we play "This little piggy..." and not just say the words. I want to pull her onto my lap and show her how to put the yellow shapes into the appropriate cut-outs of the red and blue ball; but she has to figure it out on her own. I want to show her how to stack the rings on the yellow cone. I want to tickle her. I want to caress her soft little head. I want to hug her and change her diaper and dress her and wipe her nose and bathe her and feed her and toss her in the air and help her stand. I've done this for so many children in the past, but I can't for my own daughter. It hurts and it is unfair.
But at the end of all my frustration is a profound sense of gratefulness and grace that I have her in my life at all. She is truly Grace. An undeserved gift of love...of favor...of life. God heard me and answered my prayer.
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