January 19

I went to lunch today, which was another “normal” thing that might as well have been cliff diving. It was hard just to drive up to the area near school and the hospital, which is not something I thought of beforehand. Up there is a whole additional world of things I haven’t faced yet. The last time I made the drive we had dinner with George and I was still in numb shock. The last time before that, I was in labor. I have been facing a lot of things at home, but this was a whole different animal. It is excruciating to relive those moments or have a sliver of those memories creep it. I cried for the last 15 miles of the drive…and I guess it can’t really be more than 25 miles total. I was having sushi with Neecers, which I thought would be a great easy reintroduction to alien things like lunch, doing my hair, and seeing people besides Chris and Aaron. The sushi place was packed, and for only the second time in my life that I can recall (this first being Costco right after I came home from the hospital) I was actually scared to be in a crowded place. That kind of insecurity never happened before Mara died. I felt better after we were able to sit down and just have conversation at our table. Neecers was a perfect friend to talk to and our lunch was really nice. I got a haircut on my way home. It felt wonderful to have someone taking care of me and to feel like I looked nice. I will take every happy moment I can get. Hey look, it’s me, looking like a normal person.

December 4

Oh my, wish I had my real camera for this one! We went to Eric’s EIGHTH (!!!!) birthday party today, and it was an Angry Birds party. Of course, his Grammy made him an AWESOME cake. There are pieces from an Angry Birds game that she used for some of the decorations, and all the birds and pigs are cake balls! SO SO cute!

October 29

Today we braved some REALLY crappy weather (it actually SNOWED!) to go up to Edison for the Haunted Halloway hosted by one of Chris’ leadership classes. It was a little Halloween fair of sorts for little ones. Colleen and Cameron came too, and Belle and the Brave Knight had a nice time walking around and playing games.

August 13

Today we went to our buddy Ben’s 5th birthday party. His parents are our good friends TJ and Lynn and we really enjoy getting together with them and getting the kids together. It was a CandyLand party with tons of cute details.

Here is the cake Lynn made…

…the cute table decorations…

…the candy hunt in the front yard…

…and the bounce castle. Again, we were just in awe watching Aaron jump around in there so soon after his surgery. Aaron is TOTALLY fine, and everyday there is something that we stop and marvel at. Like TJ said today watching Aaron, it really is a miracle, and like Lynn said, thank God for that doctor’s big brain. :) We totally agree.

July 30

Tonight was the last meal in our amazing dinner schedule. All the food that has been prepared and delivered (that’s the hard part because driving back and forth to our house pretty much sucks for everyone) has been wonderful and we are most grateful. Here are corn casserole, meatloaf and scalloped potatoes provided by the McMillians.

July 26

Lots of fun going on today!

First, Aaron wanted his picture taken in front of the Dan Patrick Show.It’s Grampy’s favorite and has been on most days. Aaron loves to watch it, and ASKED me to take his picture in front of it. Too bad it’s McLovin’ in the background.

Later, Jojo came by to make a food delivery for our dinner tonight and brought his frisky and adorable puppy, Dexter. He is ADORABLE. Aaron was a little freaked.

Here’s some delicious Filipino food that Jojo’s mom made for us. It was SO good!!

And in the evening (note that Aaron is in his jammies in every picture today), we did some painting in the Africa room! This is the blue at the top of the walls to make the African sky. Although an orangey sunset might be more evocative of the savannah, this goes with the lovely blue sky on the watering hole mural Aaron will have on one wall.

He REALLY wanted to help…so…gotta let him. It is his room after all.

July 21

Here are the boys enjoying a little tv. Tonight we had our first of two dinners provided by Neecers! She brought us a delicious Paula Deen chicken casserole and the makings for Paula Deen’s Corn Casserole. Plenty of butter, but really good!

July 19

Here is Aaron watching something on his iPod. I thought it was so cute how he got in this position on the couch and seemed perfectly comfortable.

It is wicked hot here this week, and Chris and Ashley had to move the deck furniture back up off the grass. TJ came by today and brought us Famous Dave’s for dinner. YAY!!

Aaron had a wound check appointment with Dr. Lehman this morning. We drove back up to Walter Reed, and Tuesday is clinic day there, so the parking structure was packed. We couldn’t find a spot, so my mom took the car and parked at McDonald’s to wait until we were done. Dr. Lehman was happy to see Aaron doing so well, and after a quick look at his incision and a couple of questions about his pain and movement, we were done. We drove an hour and ten minutes each way for a four minute appointment. GAH.

July 18

We had a visit from Ginny Morton today as the first participant in our meal calendar. Ginny is one of our school librarians at Edison and a dear lady who is always so so kind. We have worked with her for several years and she is an important Edison fixture. She came down and played with Aaron while he showed off his new castle toy. She brought us a truckload of food, which you can see here, and some great book for Aaron. 

Ashley and Chris stained the back deck today, and instead of taking a nap (we don’t quite have that back on schedule yet) Aaron put on jeans and walked down the stairs and said he wasn’t tired. sigh.

Since we’ve been home…an update

Well, it has been a little over a week since we got home from the hospital, and truthfully, today, unless you lifted up Aaron’s shirt and looked at his incision, you would have no idea what he went through. His recovery has been truly amazing.

Our first evening home was nerve wracking. He couldn’t stand up or sit down without help, much less move around the house the way he used to, so he needed help with most things. He couldn’t just flit about from toy to activity to toy like a kid usually does. Every time he wanted to do something different he needed help getting to a standing or sitting position. His back hurt after the drive home, and of course our many stairs were a challenge. I had him sitting on a pillow the first day or so, but he was quick to ditch it. I was so exhausted that night that all I wanted to do was put him to bed by 6pm, but resisted that because we so wanted to get him back on a regular schedule.

We noticed that he had developed a bit of a funny walk, pelvis out, shoulders back and elbows bent, and at first it was cute, but I started to wonder (and worry!) that it might be permanent…it was pretty silly looking, but now it’s already mostly gone :) He lost quite a bit of weight during his 4 days of no eating, and as you can tell, he didn’t have a whole lot of weight to spare. It became so obvious to me once we got home and he was wearing regular clothes. His knees and elbows stuck our so bonily, his shins looked so much thinner, and his eyes looked very sunken. It kind of turned my stomach, but that has gotten much better over the week too.

Here is a picture of our first night home. Aaron wanted to work on a new puzzle that my friend Andrea sent from England…and Aaron wanted to do it four times in a row. I guess we need to get him some more puzzles! You can really see his skinniness here.

Another extraordinary thing about our time post-hospital is that the meal calendar arranged by one of our dear friends began. Kathleen Racek found a website where you can set up a calendar where people can sign up to coordinate meal delivery for someone, and she set up a huge calendar that stretched from July 18th-31st, every day of which has been filled by our incredible friends. We are so full of gratitude for the generosity and thoughtfulness people have shown us throughout this time. We don’t live close to anyone, really, and for the most part, the drive down here is pretty inconvenient for all. It’s been so so helpful to have dinners delivered, and wonderful to get to see our friends.

Here is Aaron enjoying our first dinner home, some chicken enchiladas from the Raceks.

After the first night and following day home, Aaron really started showing how much he WANTS to be healed and back to normal. We were fascinated to watch how he adjusted his movement so that he could both do his normal activities and accommodate his own physical comfort level. He asked people to give him a hand or grabbed onto a piece of furniture when he wanted to get up or down. Each day he did more and more on his own without help. He even picked things up from the floor with his feet, since bending over is the last movement skill to return to normal, and he has developed this very equine way of bending his knees one at a time to get down on the floor. There were clearly some activities that still hurt him, but he was only using Tylenol twice a day and now he isn’t using it at all.

He became very frustrated with the limits we placed on him, coming to ahead with having to hold hands with someone as he went up and down our stairs. We have a long steep staircase up to our second floor, but he did NOT like having a person with him. Finally, after he got scolded for sneakily going up by himself, he cried and told me, “You don’t think I’m a big boy anymore. I can do it myself.” It was so sad, and so hard to make him understand. We felt bad for his frustration and tried to give him lots of other chances to move on his own. It has been inspiring to see how he is visibly better and more able every day. After several days the only thing he needed help with was getting down to a laying down position. Today, there is really nothing that seems to hurt him, although a couple of days ago, he ignored my warning and jumped down from a bed, and it hurt him, which kept him temporarily in check.

As his doctor told us, he was going to get better so quickly and want to resume normal activity, and we were going to need to limit him. If he does something that has a jarring impact on his back, it will hurt him, but he can’t do any damage to his spine. If he does something that hurts, he won’t do it anymore, and that’s that. So far that has all been exactly true.

He had an appointment with Dr. Lehman to check his incision and it was looking great, and he will have another appointment on August 10 to check the progress of the fusion of his spine. Hopefully that will all be fine and we will be going in for monitoring x-rays twice a year during his growing years.

At this point, the residuals seem to be a fussier, sassier, and clingier personality, and a pretty huge fear of falling down. A couple of times he has stumbled and let out big scared screams. It makes sense that he is scared of that, and prior to his amazing job in the hospital and recovery since, he has never been particularly daring or resilient. I hope he will continue to gain confidence as his physical activity increases.

As I close up this post, I want to say on behalf of my family how much we appreciate all the different ways people have reached out to us during this time. We have had phone calls, emails, cards, facebook messages, meals, gifts, from family and friends from all corners and just could not feel more supported. This has truly been the most challenging experience of our lives. Although it has gone very well, it has been a very scary year, culminating in a cumulatively huge amount of anxiety and fear. The communication and help we have received from all of you has been like a blanket of support making all of this so much easier to bear. Thanks so much to all of you, from the bottom of our hearts.

We now continue our regularly (well, kind of…) scheduled blog posts.

July 9

Today we are picking up NanaGrampy from the airport, but before that, we are trying to cram in a little more pre-surgery fun. We went to a Rocknoceros concert with Colleen and Scott and Cameron, and then the kids ran around the park a bit before heading back to Col’s house for lunch and a little front yard T-ball. They love each other and have so much fun running around crazy together.

All I can say is…we have more pictures for their wedding invitation.

 

When we got home from picking up NanaGrampy and having dinner, Grampy unloaded some surprises from his luggage.

He brought Chris SIX JARS of the delicious Knott’s jelly that we can’t get in stores here…

and brought Aaron this AWESOME Buzz arm with nightvision :)

June 26

This morning we spent some time getting the patio table and chairs cleaned up for summer use. It felt good to get it done, and reminded us how nice it is to be out on the deck. The inspiration might even last into the summer and yield a new coat of deck stain and some new lights out there!

This evening we got together with our friends for some swimming and dinner. The kids had a great time being rowdy and we got in a good visit before Aaron’s surgery.

 

June 25

Today we went to Drew Racek’s birthday party. Aaron had a great time playing with his friends outside in the water, and the Lego themed party included every detail. Kathleen knows how to do a party!

Lego juice boxes…

goody bags stamped with Legos dipped in paint…

Lego guy marshmallow pops!!!

 

aaaannnndddd…Aaron on the way home.