The Thing That Never Gets Done

 I don't think I had a chance to show you my fortune cookie from dinner with my friends while in Arizona. I thought it was perfect for how I was feeling after my trip there to be with my friend Ann for her son Jack's funeral. We all got a fortune that was eerily apropos.

I'd been putting off making some medical decisions for Ainsley but I worked through that and scheduled multiple appointments with various specialties. It feels good to get that done. Our sleep study will be in June and I will let that guide our decision about decannulation with CPAP. We will see the ENT on 2/25 for the nasendoscopy and that will help us decide about whether to continue Botox injections. She'll see Craniofacial, Pulmonary, Endocrinology, Dermatology and the dentist within the following months. In addition I notified all her doctors via e-mail that she started eating orally. Some days and weeks her care really is nearly a job. I don't know how I would do it if I was working outside the home.

I felt the desire to do a detox/cleanse and picked this one.  For 3 days I drank nothing but juice and tea (and coffee which is cheating but I wasn't about to give up my coffee). I followed it up with 2 days of mostly vegetable soup. My friend Mel convinced me to try dry brushing. I did that followed by the epsom salt bath recommended by Dr. Oz (though not all 3 days). I got a pretty bad runny nose. I'd heard a detox can make you feel sick as your body is rid of toxins. No such luck. I was sick, and it lasted a week. Probably because I spent a day at school.

We had a new nurse start. She is working Wednesdays and 6 hours on Saturdays. This will allow me to have one day that I can take Evie and Adrian out without Ainsley (Wednesday they get out of school early) to run errands or spend time with them. Saturdays will allow both Steve and I to attend Adrian's sports games and spend a small amount of time with Evie and Adrian. Ainsley takes a lot of attention to care for. Rather than get by with the bare minimum of nursing I'm trying to add a bit more even though it is an intrusion into the family. Plus training a new nurse and getting used to their personality is stressful. I'm sticking it out, hoping the extra help will help us re-balance and better meet everyone in the family's needs. This includes ME. Often moms put their own needs last (and it's even worse for special needs and medically intensive moms)  which then causes resentment.  I'm done with that!  

Aside from not being able to start my juice cleanse I was happy to go to school with Ainsley. I love to see what she is up to during her time at school. I LOVE this new program, Starfall, the special ed teacher is using. The kids love it too. 

It was awesome to see Ainsley eating lunch in the lunchroom. She's still eating orally. 

She loves to "run around" during recess. Though I think she really wanted to play tether-ball. 

Here she is working during OT, picking up pompoms and identifying colors.

Though she comes home tired we have more to do. She has to finish her lunch (there isn't enough time because she is slow). Then we try to have her do "homework" before she gets some downtime with a video before dinner. It also takes her a long time to eat dinner. Often Evie or Adrian have ballet or sports to be at. And they have homework. So the evenings are busy even through we are a bit less pressured after dropping speech and hippotherapy.

We had conferences last week. I was a bit annoyed that Ainsley's Gen Ed teacher wanted me to set a goal of reading to her every night and also make up some other personal goal for her to work on. It nagged at me for days even though I tried not to let it bother me. I do read to Ainsley. I just can't always do it every day. I guess she doesn't realize that we already have way more stuff to work on than I have any hope of accomplishing. I read to her as much as I can but I felt like she thought I was making excuses. People that don't live this life have no idea what it's like and really can't get it. I really try not to let it get to me but it isn't always easy.

For Christmas I bought a bookshelf to organize her stuff to make a "home program" easier for all of us. I've been trying to create a chart for the past 6 months that makes it easy to keep track of what we need to do with her in the following areas:

• Stretching/exercises
• Walking/balance
• Handwriting/Coloring
• Academic: Colors, Letters, Numbers, Shapes, Reading/Stories
• Cutting
• Oral Motor/Speech
• Communication Device

Unfortunately the hours between when the kids leave for school and the first one comes home go by very quickly. Every week I think this will be the week I get it done. Then it isn't.  One day at a time the time runs out. This week I did get my desk cleaned off and started re-organizing my binder and found all of Ainsley's papers with her goals, my ideas etc. So I'm setup in a good position and I'm going to reserve Monday 2/10 for this purpose. So there. 

Even though I beat myself up because the chart isn't done, we do still work on stuff, I'm just trying to optimize our time and energy (and get Steve and the kids to help). I've starting taping up her work on the bookshelf, which is so fun to see. I'm hoping it will encourage her to be proud of her work and make it fun. I bought her new crayons and markers with her Christmas money and put them out in front of the TV with paper and scissors so she has constant access. Here is some of her work.

Her drawing of spaghetti and meatballs. The Kumon workbooks are great.  

Here she is tracing. You can see how much time it takes. Ainsley's cerebellum malformation causes her to require more time for motor planning pretty much no matter what it is. I'm so proud of her, she's improved a lot!!! She can nearly do it independently.

She is also doing well eating independently when she likes the food (like daddy's blueberry pancakes). She's so proud of herself and it's AWESOME! We have also been reminding her to use her Frontalis Sling and she is using it more often to lift her lids higher. I was worried that the surgeon took too much eyelid during the tarsal switch and that her eye openings were left too small to open comfortably. I'd love to be wrong about that.

She can finish some more complex foods, like mugwort yakisoba, with a bit of prodding and extra time. She's come such a long way and fought so hard to eat orally!

Other goings on these past weeks.

Evie had 3 dance recitals: one for school, two for the dance studio on 2/25, 26 & 27. 

She looked great up on stage.

Adrian volunteered to be a 5th grade helper at Movie Night at the school. It's a fund raiser but a lot of fun too. This year's screening was of Despicable Me 2. 

He also had basketball, a major book report, and a science project. 

It turned out great in the end, but due to our busy schedules we had to do a ton of the work the night before. That meant I was busy helping him, way past bedtime. At least he did it. And he was happy and proud of the result. Neither Steve or I ever entered the science fair at school. This should give Adrian a 4 in science. This is just one example of a night when Ainsley just isn't going to get a bedtime story.

His project was showed how the distance of the light source affects the rainbow that a prism makes. 

A huge time suck has been this stupid table that I ordered after not finding anything at any of the local furniture stores. I ordered off the internet and after a bunch of hassles the table arrived damaged. A replacement was ordered and I experienced all the same problems as the first time, plus many conversations and e-mails with the company. Today the second table finally arrived and guess what?! It was damaged. AGAIN. 

It looked like it was gouged by a forklift. And yet they still tried to deliver it. It's so beyond frustrating. I don't have time for this crap. 

 Then there was the Superbowl. Did you hear Seattle won?! It's been kind of a big deal. Even though I don't generally watch sports on TV we had a little party which was fun. 

We have limited seating so I popped in and out and built this terrarium in between watching. 

I'm trying to finish some decorating. We're homebodies. I think it's important to feel comfortable in your home. For it to be a reflection of the person you are. Besides, it feels good to be surrounded by rooms you love. I'm not quite there, but nearly. I think it needs a piece of art on the wall next to the cubbies, but at least it doesn't look half finished anymore. (I'm tired of half finished.) I plan to find more interesting and meaningful objects for the cubes over the years. I'm so glad after years of wanting it but denying myself, I finally bought the cubby shelf. I love it!

This weekend is Evie's 13th birthday party and we are keeping it simple this year (her real birthday is, of course, on the 18th like Steve and all the kids).  Looking back I guess really this is the first time we haven't had a theme. As Evie got older she and I came up with ideas together and we fed off each other and overdid it a bit some years. This year it is a sleep over with pizza, a movie, candy, ice cream and store bought cupcakes. Easy peasy. What a relief. How amazing is it that I'm blogging instead of doing something crazy like making a paper mache' pinata. A look back at birthdays past. *

One: Zoo

Two: Teddy Bear Picnic

Three: Bugs and Butterflies

Four: Valentines

Five: Strawberry Shortcake

Six: Princess

Seven: Fairy Paperdoll

Eight: Harry Potter

Nine: American Girl

Ten: Rainforest

Eleven: Percy Jackson

Twelve: Red Carpet 

Have an awesome weekend! I intend to. Adrian made his first basket last weekend and I wasn't there because it was an early game and the nurse couldn't work. Hopefully he'll score tomorrow and I'll get to see. I plan to cherish my baby for another week before I officially have a TEENAGER! Gasp! I'm scared. Wish me luck.

*Clearly extravagant birthday parties are a luxury not a necessity but I feel compelled to say that a lot of the work happens after the kids go to bed or during school. Some people might consider a waste of time but the memories will last a lifetime.

Every Life Counts

It's been a week since I returned from a trip to Arizona to be by the side of my dear friend Ann as she buried her beloved son Jack. I came back from this trip a changed person. That might sound strange but it is true. Every now and then in life you experience a moment or event that you will never forget. The 5 days I was there were filled with unforgettable moments and it all added up to a life changing experience:  I got to meet so many wonderful people who share similar yet different life paths; it was also the longest time I've ever been away from my children which gave me time to reflect about the things that are most important to me; and most importantly we celebrated Jack's life in various ways and I was shown again how much one life can mean. I had so many thoughts and feelings during my time in Arizona. I couldn't possibly recount all of them but I'd like to take the opportunity to talk about an important issue: the value of all human life.

As I prepared for my trip and told people where I was going I could see the pity on their faces as they heard about Jack's life spent on a ventilator, confined to bed and I could see they just didn't know what to say.  Although it is true that none of us would wish to be immobile, relying on a machine to breathe, there was so much more to Jack than his disease, muscular dystrophy, and the condition of his life on earth. I want people to know that.  Jack had an amazing spirit that was so evident in his sparkling Irish eyes, and beautiful smile! He made people happy because he loved them and was glad to see them. A simple truth we all might want to remember. He also reminded people to see all the things they are so lucky for, like the freedom you get from a healthy working body. Most importantly he enjoyed life and was happy. That's not to say he didn't suffer, surely he did. We all do in different ways at different times in different amounts. It's an inescapable part of being human.

The title of Ainsley's blog is Happy to Be Me. It has always been my mission to show the world that Ainsley is happy to be who she is, with all her "imperfections". Despite suffering through painful surgeries and the physical limitations imposed by her conditions she can live a good and meaningful life and do so happily. As her parents it isn't always easy being her caregivers, that is true, sometimes I even complain a bit but we do the best we can. We truly love Ainsley as much as we do our two other children. I don't think people always realize or believe that. There has never been any question in my mind that Ainsley is happy to be alive.

You may or may not be surprised to read that I've had many people come out and ask me if I "knew" Ainsley would be "different" before she was born. Before they go on, I already know they are working up the courage to ask next if I would have "terminated" if there had been some way to know. I know they don't mean to be hurtful but to ask the question implies that perhaps they think I should have or at least that there may have been cause. After all that is not a question any person would ever normally ask a mother. I myself was an unplanned pregnancy and having been given up for adoption, I am personally against abortion. I would never end my unborn child's life for any reason. My life's perspective has lead me to feel that all babies should have the opportunity to live and what happens from there is up to God or fate.

People ask the question because they know the truth is that our society doesn't value people who are different. The more different the more clearly the person is devalued. But there are a huge number of pretty average people that live a life of inner turmoil because they simply feel "different" even though they really aren't and they struggle to feel like they fit in. I also see that at this time so many people appear to feel lost in this world. We all long to make a difference and sometimes don't know how. I have learned through Ainsley's life and our many friends who were born into this world "less than perfect" that EVERYONE can make a difference. In fact sometimes it is the people you don't expect to make a difference that do so in profound ways. Sadly many "normal" babies grow up to be miserable adults that commit horrible acts that impact the world in countless negative ways and become far more of a "burden to society" than any special needs or medically fragile child ever is. The measure of a person's value cannot be predicted by their perceived "normalcy" nor can we predict the path any child's life will take when they are born.

It's ironic that we are taught that we must be "normal" to be happy despite the obvious fact that so many "normal" people are not happy. Although I can see this clearly now it is only because of the path my life has taken as Ainsley's mother. I have struggled. After Ainsley was born I really believed that surgery would fix the shape of her head caused by the craniosynostosis and she would look like she fit in (there was no way to foresee the complications it would cause with her eyes), she would get the trach out and life would be "normal again". I despaired when things didn't go the way I hoped because I believed in the mythical promise of "normal life" as the route to a good and happy life. It took a few years for me to accept that my life was forever changed and a bit longer to realize that it was going to be okay anyway. Ainsley made me rethink everything I knew about what it means to be happy.

Over the years I looked for inspirational stories of children overcoming their medical conditions to give me hope. I found many of them. Plenty of kids who got their trach out and went on to live a typical life. A woman with cerebellar hypoplasia (like Ainsley who was written off as a baby) who is now living happily, married, a business owner with two masters degrees. A son with CP who lives independently working as a graphic designer in another state despite being wheelchair. There are many such stories. But there are also many kids like Ainsley for whom life is too short. As parents we cannot know what the future will bring. Maybe it's even better that we don't. And that doesn't just apply to our special needs or medically intensive kids. Wherever life leads us it is truly the quality and way in which we make the journey that matters, not the destination. For all of us.

Because Jack was born, and lived, there was an amazing chain of events that occurred. His amazing mother Ann looked for ways to connect with other families of children with medical issues, and she did. That support saved and uplifted so many families. Ann saw that medical care could be improved and started a program to enlighten new resident doctors of the importance of doing their work with compassion, care and kindness. Those doctors will go on to care for countless other children during their careers. Ann started a non-profit organization that provides respite opportunities for overworked caregivers when they need it most. Ann shared her journey through her blog Jack's Journey and Then Some. She inspired us to live a good and happy life and also showed us that we can do hard things even when we don't want to. There is a ripple effect from Jack's life and we will never know all the ways in which this boy positively impacted the world.

I have witnessed that all of us have the power to affect the world and people around us every day through small actions that create a ripple that goes out into the world and affects it in unknown ways. We aren't as insignificant as we sometimes feel. The small things go the furthest. We should aim to spread love and acceptance for that is really what we all want most. We each only get one life and one opportunity to make it count. When we reflect on the end of a life there is an opportunity for us all to take stock and reevaluate our lives and those things that are most important to us.

*****

 Friday we set out together on a memorial hike through the dusty rocky desert path. After the long hot hike in the sun up the mountain with Jack's Woody doll we gathered in a circle to share very emotional words about how we knew Jack. The sun started to set as we made our descent, the temperature dropped as we made our way down in near darkness. The process was cathartic. 

 Some members of the trach sorority.

 It was hard to say goodbye.

I picked up this rock during the hike and brought back a small one for each of my kids. I  put it where I can see it every day to remind me of this special trip and as a reminder to enjoy the journey wherever the path leads.