It's not. And if you answered yes, I'm sorry. Really.
We all do the best we can for our kids. Parenting requires a lot of our energy. I don't know many parents who say it is easy being a parent and even less parents of children with special needs or who are medically complex (or both) who say it is easy.
A few months ago a friend I met in an on-line support group for one of my daughter's conditions told me I make it look easy. I'll say it again. It isn't. And I'm sorry if any of you ever wondered why it wasn't "so easy" for you as I may have made it appear to be for me on the blog.
It is fantastic to have the support of other parents going through the trenches. We look to each other to feel a sense of belonging and understanding because being the parent of a special child can be isolating. Sometimes we feel like the world just doesn't understand all the additional pressures and concerns we have on top of regular life. The risk of social media is that we see the best part of people's lives and not the hard or ugly parts.
I am pretty good at taking pictures and combining those with words to tell a story (if I do say so myself). I've tried to write about the difficulties I experience as a parent but I think that in contrast to pictures and the good times it probably has seemed insincere or insignificant. Truly, I could take pictures and write about anyone's life and portray it as wonderful because there are wonderful parts in everyone's life as well as real true struggles.
The truth is that I feel overwhelmed a lot by the task of raising Ainsley in the way that I know she needs and deserves. I find it challenging to maintain balance between her needs and those of my other two wonderful children. Other times I just don't know what to do for her and I feel lost and confused. It has been difficult on my marriage and I have sacrificed a great degree of my own sense of self. This isn't healthy and it makes it hard for me to be the kind of person I want to be. I'm trying to be better about being honest with myself and making my own needs a priority. Sometimes I do crazy things that aren't a great use of time, like throw a big party or start a decorating project that I don't have time for. I think we all misuse our time sometimes, just in different ways. Sometimes I even think blogging is not the best use of my time but then I will get a message from someone who says they've been reading and Ainsley's story has given them hope for their child. That is why I continue to blog. I no longer stay up late in the wee hours of the night to write like I used. I have to protect my health, both physical and emotional for the long haul.
In the future I plan to write more about what we are doing with Ainsley because she is the reason this blog exists. There are always so many things going on with her that I never seem to get around to blogging about, like her AAC system (which I'd planned to review since we got it in 2012), therapies or skills we're working on. She is a part of our family so naturally there will continue to be photos of our family, and it has been convenient to be able to share those with our other family and friends, but the way I do that may change a bit in 2016.
For now I am trying to get on top of the details in my life, mostly Ainsley's stuff like deciding on an AAC system, new IEP goals, medical and equipment follow up (I should be buying her forearm crutches right now), improvement and more consistent implementation of our home therapy/education program, as well as some personal stuff. It feels like this.
I would conclude this post by saying there is one thing that is easy about my life and that is loving Ainsley. Although that is very often true that wouldn't be a full truth and since I'm being honest that wouldn't be in the spirit of this post. There are plenty of times that she frustrates me and I lack patience with her or I feel resentful about aspects of caring for her and just wish things were easier. For her yes, but also for me. I know that her life is worthwhile and therefore everything I do for her is too. Knowing something in your head can't always change the way we feel. It is human to feel complex emotions about complex things. So instead I will end with a quote:
“Do not pray for an easy life, pray for the strength to endure a difficult one.”
― Bruce Lee
Feb 1, 2016
Jan 25, 2016
It has been two months now since Ainsley's Biggest Supporter, Joanne my birth mother, passed away. The orchid I brought to the hospital is still covered in blooms. When I brought it I thought she would be there for a day and then taking it home, not there for a day and here no more. When I look at this orchid in my kitchen it reminds me how fragile and strong life is.
Time will move onward whether we want it to or not. Life does not stop for grief. And so I share photos from our holiday season. Late but that's life.
Every year we look forward to breakfast with Santa. My friend Darcy hosts this for her friends, family and clients. She is a Windermere realtor, you might be able to snag an invitation if you become a client and you should because she is awesome not just because her Santa breakfast is the best! Find her here.
Ainsley used her AAC device to wish Santa a Merry Christmas (since she can't say it with words). I do believe he got a little teary eyed. Secretly I think she's his favorite.
We used to do our Santa photos at Macy's every year but now I take it myself at Darcy's.
They're getting so grown up!
For a few years (since we moved into this house) I've been thinking that we needed a second tree so there is one in both of the rooms that we celebrate Christmas in. The weekend before Thanksgiving we finally bought the fake tree I'd been eyeing (I was worried they'd sell out). It is frosted and my plan was to decorate it in white with animals so it looked almost as if it was plucked out of the forest. Little did I know that Joanne would pass away a few days later. It ended up being a good distraction from my grief for periods of time. It was very difficult to find enough ornaments all in one year as the stores would have a few of each (particularly the white poinsettia clips) and I'd have to visit all the craft store locations in the area over and over in a panic because I knew they would soon sell out. I underestimated the effort it would take and unfortunately it delayed my preparations for the holiday which isn't great when you are hosting dinner for 20. I was happy with the end result and it's completely done and will be easy to setup next year. That was my goal: to start decorating earlier in the season so the season is more enjoyable and less pressured. Hope for next year even though it backfired this year.
We always get a real tree. The kids were clear this was not negotiable from their standpoint. Usually we make an afternoon of it at Redwood Tree Farm but this year we had to be practical and go at night during the mid-week.
We did our usual new favorite thing: a tree trimming party with appetizers for dinner while we work.
Ainsley had a lot of fun helping.
After so many years with crummy candles that were too small I was thrilled to finally find the proper candles for my Swedish angel charms, from when I was a kid.
The finished real tree. A little different this year since I stole the snowflakes and icicles for the white tree and made new bows.
School Dance Performance
Adrian's school had an all school performance showcase (primarily dance) in December. Like the month isn't busy enough. It's one of their way of doing "PE". Adrian chose to do a hip-hop solo which I thought was quite brave of him. He did awesome! He's loving dance class and has officially decided not to do baseball so that he can take dance classes. That cuts the last sport out of the picture. Honestly I'm not surprised. He's changing.
I swear the best way to get projects done around the house is to host an event, without fail we always seem to be doing that. Steve has been wanting to redo his bar, the shelves that came with the house were cheap MDF and still had the stickers on them. We knew we wanted glass shelves but weren't sure what type of brackets to use or the rest of the design. We decided on chalkboard walls and added a new light fixture with a dimmer. A new counter top and sink will come later. The glass and hardware was of course special order and didn't come until the week of Christmas, as if it isn't busy enough without painting and installation problems. But it's done now and he is happy with the result, and it was one of his "presents" to himself.
We spruced up Steve's music recording space with the score of a lifetime, an Oriental carpet I found on Craigslist for less than the cost of the curtain. To make space I Craigslisted a bunch of junk we had in there and made a large donation to NW Center. Decluttering feels great! The guys had fun checking out his man-cave on Christmas.
Our family room is an odd shape and size. The furniture had been "off" since we moved in. We didn't want to buy a new sofa since they are so expensive (plus I love mine) but something needed to be done. By chance Evie and I found the perfect solution, a couple of affordable arm chairs to place in front of the fire and fill up the empty space and create balance. Of course the store only had one and I knew I had to have the second chair to sell Steve (and Adrian) on the idea. I convinced the store manager at another location to sell me the floor model, so we had them for Christmas. It added some much needed seating and we've used the chairs a ton since. After some searching I found the perfect accent pillows and added an accent table to hold a drink. I'm super happy with the change to the room and am thrilled that it finally feels "complete".
Every year Joanne hosted Christmas on the 23rd. It felt weird being back in her house without her there. Of course it was emotional for all of us.She was cremated and the urn was there. My sister Rene announced she is pregnant and the ultrasound photo was placed next to it. Sadly Joanne won't get to meet this grandchild. There are so many moments she will miss and be missed.
She had a thing for baby pickles and so do we. One year she gave the kids a jar of "her" pickles for Christmas. So I brought them in her memory.
By strange chance a conversation led to the discovery of an Underwood typewriter in a wardrobe. I have always wanted one but never found the right one even though I came close to buying one a couple times. I made sure that everyone was okay with me taking it. We typed a message to Joanne and I think she was sending me a message too through me finding it. I cried a little that we will never know it's story. Joanne should have been here to tell us. I think it was meant to be and a message to me to write my own story before it's too late. It was my favorite gift of the year.
Like most parents, I'm sure, I kinda wish this elf had never found it's way into our family. He didn't make his arrival until late December this year. He brought a note that he got lost (really) on his way from the North Pole. After Steve looked everywhere all month I retraced his actions and figured out he was stuck behind Steve's clothes in the closet since last Christmas Eve. Adrian was the reason Pip-Squeak was added to our holiday traditions. It was peer pressure, Evie begged and pleaded on his behalf because "All the kids have one." and he would otherwise feel deprived for the rest of his life. Sheesh! Even though he's too old now he was still a bit disappointed when Pip-Squeak didn't show up on December 1st. His bubble has been burst. Ainsley didn't notice at all, so this year he might get lost for real.
Simple and cute, my favorite.
A night of debauchery on the 23rd. If you can believe it one of my kids got the JD in their stocking by mistake (Not from us!) this year.
Pip-Squeak always makes a Grand Exit on Christmas Eve.
Hopefully he won't get lost again. Or maybe hopefully he will.
Ainsley was so excited! It was so cute the way she communicated her questions about what we were doing and when, as well as her enthusiasm.
I had better luck with the breakfast casserole in the oven, than the Crock-Pot this year.
With vegetarian sausage because of Adrian of course.
I have to credit Linda for the Salmon cucumber hours d'oeuvre idea that was too cute not to try. Somehow we pulled off the hosting thing despite the serious lack of sleep (2 1/2 hours this time). Dinner was a bit late due to the prime rib recipe not having a note that the cook time should be doubled because it was double the size. I guess I was too tired when I cooked it in 2013 and too tired to catch it this year too. I did look at the instructions and think "Wow it only takes an hour and a half". But we noted it for next time, if there is one. We don't have a seating area big enough for 20, but we made it work by dividing up. Everyone seemed to enjoy themselves and that is what hosting is all about so I think all the fussing was worthwhile in the end.
After dinner we played music and sang carols thanks to our guests Roger and Christy.
We had too much fun on New Year's Eve! Steve was a crackup!
He takes his games seriously, even if it is Just Dance.
Evie wore her Ariel onesie the entire night (half tied around her waist) so we made her dance to Under the Sea but joined in for the fun of it.
We played Rummikub until 3:00am and of course Adrian won, that kid is a wiz at games. My sister Leah's family stayed the night, so no, the little kids did not stay up nearly so late.
But hey, we were exercising our bodies and brains right?
New Year's Day I made the obligatory black eyed peas for good luck with greens, rice and ham. Yum. Evie's "friend" came for dinner and we watched a movie. We'd been trying to arrange that for months.
January Dance Recital
This weekend Steve was at NAMM and Gotta Dance had their annual January dance recital (performances on Saturday and Sunday). E&A caught a ride with friends on Saturday and Sunday my sister Sheryl came over to watch Ainsley so I could go to the show and relax. It's too hard for Ainsley to sit through over 2 hours of dancing. I made it through the weekend.
Although Adrian has taken some dance during the summers this was his first dance recital with the studio. I was so proud of both of them. I couldn't help but think what a shame it was that Joanne never got to see Evie dance en pointe' or to see Adrian's new moves. This grief thing is hard. As soon as he got back Steve left on a business trip and it's early release for conference week all week. We need to have some school meetings for Ainsley, as always she's got "stuff". Steve rebuilt the computer in January to deal with our need for more space for photos. Now that we're through most of this stuff I hope I'll have a chance to get back to blogging more regularly so my posts aren't so darn long. (*Oh, and Adrian got braces in January as you can see above. ) We are moving onward.