January
We began 2008 living with our friends packing our belongings, preparing for a journey. We took Max to NIH in Maryland to join a study for his metabolic disease. The month of January was a ball of excitement and energy. I remember barely being able to breathe most of the time. I would wake up with a tight chest, not believing what we were about to do. It was crazy, and we were actually going for it! We packed up our lives in Denver, and headed out for a new life, in a new land.
February
The shortest month of the year...and the most special to me. February this year though, gave us a dream. We left Washington DC, and arrived in London February 12th. We got there and found ourselves blurry eyed, and minus one dog. We drove on to Sheffield, and waited to hear if/when we would get Olive out of doggy customs. We spent Valentine's Day with our friends, met new friends, Steve talked with companies, we looked into doctors for Max. And I got sick. More sick than I can remember being in such a very long time. And Max had seizures, lots of seizures. We spent my 29th birthday with my mom in London, and we made the decision that day to come home. A decision that still is so confusing today.
March
We made the trip back Colorado, only to hear that we need to move to California. We were glad to have the direction, and loaded up our belongings and drove across five states to Northern California. It was a beautiful drive, we saw so much of the West. I saw Vegas for the first time and decided I NEVER need to go there again! We arrived in our new house on Easter Sunday. We set right out to outfit our new home with IKEA furniture, and made trips to the ocean and San Francisco. We really enjoyed our time in California...but again...it wasn't the right fit for Max.
April
We settled into our new life in California. Steve had a lot of travel, and we tried to either go to the beach or San Francisco every weekend. We had a lot of fun, and it was fun finding all the new places. For the first time in over 10 years I had to take a driving test...and I was so nervous I wouldn't pass!!! But I did, and got myself a snazzy CA driver's license. And I nearly lost my little Olive when she decided to follow her nose the the Filipino restaurant down our street.
May
Ang and Dan came to visit, and get to hold the title forever as the only people who got to see our home there. We started hitting up against walls for Max's medicaid, and therapy in California. It was like being stuck in traffic there! Max also started to think he didn't want to eat from a bottle anymore. And so began that battle. We made a trip back to Denver to see doctors, and a very very special Opera for Max.
June
Abbey joined us in June, we went to the ocean, and San Francisco, and decided AGAIN that we had to move. We packed up our home in California, and headed back to Denver. I was sad to leave California, but I knew we had to go back.
July
We got back to Denver July 5th. July 7th we had to admit Max into the hospital for seizures that wouldn't stop. If we were looking for a sign that we needed to be in Denver, that was it. We'd traveled halfway across the world and back, and Max didn't need medical help until we got back here. His seizures started and wouldn't stop because we couldn't get his medicine into him through a bottle, so in July, we made the decision to get him a feeding tube.
August
Max had his g-tube surgery in August, and our little niece Adeline was born. We were thankful to be here for both of those events. We also got Max in to a new pediatrician, which was a life saver for us.
September
Steve was gone most of the month traveling for work. Part of the deal of him getting to work from home means he gets to go when they tell him. We also spent all of the weekends looking for a place to live.
October
We found our house, and our little guy turned 5. We had another hospital event, as Max had a bad reaction to a vaccine. We chose a wheelchair, and got back into the swing of therapy.
November
We moved into our new house, and had our first holiday here. Max went to the zoo for the first time. We unpacked all of our belongings and started to feel at home in our new place.
December
The end of the year, and quite possibly, the hardest month of 2008 for me. We put up our Christmas tree, and Steve left to work for 2 weeks. I had an incredibly hard time with Max, and all that is changing with him. Steve surprised me late one night with an early arrival, and we prepared for everyone to get here for Christmas.
And now, we're nearing the end of 2008. Looking back, it has been the most full year I can remember. I can't believe sometimes all we've done. It feels like we've lived a couple of lifetimes in this one year. Parts feel like they were too short, and I wish we could do over a few things. But here we are. I have absolutely no idea what next year holds. 2008 will go down in our books as one of the strangest years in my life!
Saturday, December 27, 2008
Thursday, December 18, 2008
A cold afternoon at our house...
I tried to get some pictures of Adeline under the Christmas tree this afternoon. She just wanted to play with her feet.
And who can blame her? They are fascinating to a 4 month old little girl!!
And so accessible!
Can you see Ang here? I think this picture looks a lot like Ang did as a baby...with more hair.
She also wanted to fuss at me for taking her picture instead of holding her.
Which Max thought was hilarious...he loves when Adeline cries. (He had just woken up from his little afternoon cat-nap)
And Olive thought it all ridiculous, and just wanted to be left to her warm resting spot. Again...hogging the chair!
And who can blame her? They are fascinating to a 4 month old little girl!!
And so accessible!
Can you see Ang here? I think this picture looks a lot like Ang did as a baby...with more hair.
She also wanted to fuss at me for taking her picture instead of holding her.
Which Max thought was hilarious...he loves when Adeline cries. (He had just woken up from his little afternoon cat-nap)
And Olive thought it all ridiculous, and just wanted to be left to her warm resting spot. Again...hogging the chair!
Monday, December 15, 2008
It's a wild ride...
I wouldn't say I was a terribly independent child, but as an adult, I would say I've been very independent. I moved out when I was 18, and jumped into the big wide world with both feet. I've not had to do a lot of asking for help, but I am getting to a point in life with Max that I am going to have to have help. And that's not coming too easily to me. It's hard to ask, and it's hard to receive, and it's hard to find.
The first step is going to be taking better care of myself. I got the name of a chiropractor from one of Max's therapists because my back has been aching this week from all the moving. I know I need to find a better way of taking care of it, so I want to get it checked out, and some advice from therapists on the best way to move him and pick him up.
Next is getting help with Max. Therapy at home, equipment to make it easier. This takes time, and phone calls, and letters to insurance and medicaid and equipment providers. Sometimes I think the reason I've not asked for all of these things up to this point is because it is an enormous pain. Incredible effort for things that would just give us a somewhat normal life. But, now we have to, so I will suck it up and get up tomorrow and start again.
And, I've been trying to work on the emotional side of it all too. I don't like talking emotions. They're mine, and I don't like to share. I'm a big blubbering cry baby when I have to talk it out, so I tend to just keep it in. And think...and think and think. But I have been trying to talk it out more lately. And it can get embarrassing to cry in front of people, or let people get a peek inside of my head, but it is just as important. I've been reading a book these past couple of weeks called
Changed By A Child, Companion Notes for Parents Of A child With A Disability. It's helped a lot on this emotional ride I've been on these past couple of weeks. This is a hard road to travel, and sometimes it's nice to read others have gone there before me. If you ever see it in a bookstore, pick it up and read a few of the short stories. Even though I've not gone through what all of the stories reflect, I can certainly understand where they're coming from.
I guess that's all that has been floating around in my head lately. I still don't have any more answers to the questions that are cycling around my life, but I'm trying to be okay with that, and just live the best today I can. Tomorrow, that will mean trying to get Max to stand up, if even for a few minutes. This may take about an hour to make happen, but he has to get back into the strength building since being sick. And it also means trying to get a hold of the respite people to see about getting that worked out. And most importantly, it means to just enjoy him. Because he really is such a fun kid to be around!
Here are a few pictures from our past several days.
He loves his Christmas tree, especially at night. But he always wants me to turn on the lights during the day. He was sitting here playfully kicking at the tree, until I told him to stop!
So he got under it.
This was after a diaper change. I had to change his clothes, and when I came back down to put them on him, he had grabbed his dragon cover and rolled on over to rest. He laid there for about an hour before he would let me put his clothes on and pick him up off of the floor! (He's peeking at me here because he was waking up...notice Olive too...what a chair hog!)
Speaking of Olive...she hates the bitter cold! When we get up and go into Max's bedroom in the morning I open his blinds and this is where she lays, right in the sunshine, until we go downstairs!
And, finally, these aren't great quality, but I thought they were fun captures. Max and I were sitting on the couch this evening and I was making raspberry noises, and he was cracking up.
We both thought it was HILARIOUS!
The first step is going to be taking better care of myself. I got the name of a chiropractor from one of Max's therapists because my back has been aching this week from all the moving. I know I need to find a better way of taking care of it, so I want to get it checked out, and some advice from therapists on the best way to move him and pick him up.
Next is getting help with Max. Therapy at home, equipment to make it easier. This takes time, and phone calls, and letters to insurance and medicaid and equipment providers. Sometimes I think the reason I've not asked for all of these things up to this point is because it is an enormous pain. Incredible effort for things that would just give us a somewhat normal life. But, now we have to, so I will suck it up and get up tomorrow and start again.
And, I've been trying to work on the emotional side of it all too. I don't like talking emotions. They're mine, and I don't like to share. I'm a big blubbering cry baby when I have to talk it out, so I tend to just keep it in. And think...and think and think. But I have been trying to talk it out more lately. And it can get embarrassing to cry in front of people, or let people get a peek inside of my head, but it is just as important. I've been reading a book these past couple of weeks called
Changed By A Child, Companion Notes for Parents Of A child With A Disability. It's helped a lot on this emotional ride I've been on these past couple of weeks. This is a hard road to travel, and sometimes it's nice to read others have gone there before me. If you ever see it in a bookstore, pick it up and read a few of the short stories. Even though I've not gone through what all of the stories reflect, I can certainly understand where they're coming from.
I guess that's all that has been floating around in my head lately. I still don't have any more answers to the questions that are cycling around my life, but I'm trying to be okay with that, and just live the best today I can. Tomorrow, that will mean trying to get Max to stand up, if even for a few minutes. This may take about an hour to make happen, but he has to get back into the strength building since being sick. And it also means trying to get a hold of the respite people to see about getting that worked out. And most importantly, it means to just enjoy him. Because he really is such a fun kid to be around!
Here are a few pictures from our past several days.
He loves his Christmas tree, especially at night. But he always wants me to turn on the lights during the day. He was sitting here playfully kicking at the tree, until I told him to stop!
So he got under it.
This was after a diaper change. I had to change his clothes, and when I came back down to put them on him, he had grabbed his dragon cover and rolled on over to rest. He laid there for about an hour before he would let me put his clothes on and pick him up off of the floor! (He's peeking at me here because he was waking up...notice Olive too...what a chair hog!)
Speaking of Olive...she hates the bitter cold! When we get up and go into Max's bedroom in the morning I open his blinds and this is where she lays, right in the sunshine, until we go downstairs!
And, finally, these aren't great quality, but I thought they were fun captures. Max and I were sitting on the couch this evening and I was making raspberry noises, and he was cracking up.
We both thought it was HILARIOUS!
We're ready...
"I may send you strange visitors. Make each desire to return. Nobody must come and feel unwanted. Share your Love, Joy, Happiness, time and food gladly with all."
--Two Listeners
--Two Listeners
Sunday, December 14, 2008
Saturday, December 13, 2008
It's that time of year...
When the world falls in love...every song you hear seems to say...Merry Christmas! May your New Year Dreams come true!!!!!!!!!
That song is stuck in my head!
Max and I got out for a while today. We even took Olive along, because the weather was beautiful, and it is going to turn nasty tomorrow. I got out and got some groceries, and we walked down to Chipotle to have lunch. By the time we were heading home, the wind had changed and was quite chilly!
I also got a few things to make some cookies with my sister tomorrow. Well, when I got them I didn't know I would be making them with my sister, but once I told her I had the goods she made a plan to come over to help me make them. (And maybe sample them too!)
Well, so much for a catch-up...Max is throwing an incredible fit because he keeps dozing off. Sometimes I just don't get this kid!
Until next time...
That song is stuck in my head!
Max and I got out for a while today. We even took Olive along, because the weather was beautiful, and it is going to turn nasty tomorrow. I got out and got some groceries, and we walked down to Chipotle to have lunch. By the time we were heading home, the wind had changed and was quite chilly!
I also got a few things to make some cookies with my sister tomorrow. Well, when I got them I didn't know I would be making them with my sister, but once I told her I had the goods she made a plan to come over to help me make them. (And maybe sample them too!)
Well, so much for a catch-up...Max is throwing an incredible fit because he keeps dozing off. Sometimes I just don't get this kid!
Until next time...
Thursday, December 11, 2008
Just so you know...
Words can not even begin to express my day today. So I won't try.
Just know that I may not be on here much for another week yet.
I may be cleaning up volcanic poop...or snot...or vomit...or calling AGAIN to ask on the whereabouts of Max's medicine...
or taking the dog out for her 8,000th pee of the day...
or wiping up ice salt off of the wood floors...
or doing more laundry that has been pooped, or puked upon...
or disputing charges from hospitals...
or watching to see if Max will leave his ear alone...or take Max to the doctor to have his ear checked out...
or be coming up with a reason why the charity of choice should consider Max's request for a chair even though "we make more money than the people we help usually do"...
or....or...or.........
Just know that I may not be on here much for another week yet.
I may be cleaning up volcanic poop...or snot...or vomit...or calling AGAIN to ask on the whereabouts of Max's medicine...
or taking the dog out for her 8,000th pee of the day...
or wiping up ice salt off of the wood floors...
or doing more laundry that has been pooped, or puked upon...
or disputing charges from hospitals...
or watching to see if Max will leave his ear alone...or take Max to the doctor to have his ear checked out...
or be coming up with a reason why the charity of choice should consider Max's request for a chair even though "we make more money than the people we help usually do"...
or....or...or.........
Subscribe to:
Posts (Atom)