Jan 28, 2014

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.

Jan 14, 2014

Major Feeding Progress and New Stuff

I have exciting news to share. Hopefully I don't jinx things by talking about it. Ainsley has made major feeding progress. Over the years we have worked SO hard to get Ainsley eating. And every time she made good progress I would push her more, hoping to get her 100% oral. We spoon fed her, or pureed what she didn't eat after meals, made daily blenderized meals or a combination of these methods. You name it we tried it. If she progressed I pushed, sometimes too much too soon and she regressed. Or she would do great for awhile until she would get sick, have zero appetite and thus regress. Or she would do great over the summer and regress when she went back to school. It was SO frustrating! As I look back and type this, honestly, it's amazing I kept trying.

As you've heard she moved onto solids this year and I think that has made all the difference because it opened up a whole new world of more enjoyable foods. We had looked into a feeding program at the hospital but decided on a more gradual approach at home.  She passed a swallow study in June  and so we worked hard over the summer.  She was doing great but I knew from experience school days were going to be a challenge (not nearly as much time for feeding) so we augmented each meal with formula to make the dietitian/doctors happy. We went from 6 cans of formula a day, to 4, then finally to 3.  Pretty awesome!

We kept with that "program" for months and and watched her weight carefully. Thankfully it remained stable. We did a round of Botox injections in October and I do believe that has helped her keep the cap on her trach which I think both helped her eating and kept her from getting as sick this year. So again, thankfully, we didn't see the typical regression during cold and flu season. Since things have been going so well I decided to push a bit more over winter break because we had more time to feed her. We made the decision to cut the remaining cans of food. Since she is at risk for aspirating on thin liquids we are tube feeding her whatever milk she doesn't drink with her meals. She did fantastic!

At "Breakfast with Santa" she actually ATE BREAKFAST! 

She ate Christmas dinner! And tried a meringue (they have a funny texture). Wow!

On New Years Day she ATE BREAKFAST...

 Including the waffle with berries and a bit of toast (eggs and sausage she's eaten many times.)

She spoon fed herself an entire cup of yogurt with no help!

After so MANY MANY meals over the years sitting with her for nearly 2 hours I was so happy to see Steve taking a turn! 

I nearly died when she ate a BURRITO!

On movie night she ate 2 pieces of cheese pizza all by herself!
It was so awesome we couldn't believe it. She's been eating crust for years but never eating the whole thing by herself. We actually hunted around the house to see if she hid it before we have her another piece. It was pretty funny! Then we gave her pizza leftovers for lunch the next day and she ate 2 more pieces of pizza by herself!

It was the turning point.

We decided to continue with this regimen when she went back to school on the 3rd. I was nervous that it would fail. She doesn't have enough time to eat her lunch at school but she has been finishing it after school when she gets home before I give her a snack. It's challenging to get all the food in but she's done it. It's been over 2 weeks since she's had formula! (She is still getting fluids through the g-tube, water for hydration plus milk since she's at risk for aspiration of thin liquids.)  I do think she must feel better because she's also had a burst in vim and vigor. She is taking risks she never would have.

She climbed into this position from behind Evie going over her head. Amazing!

And she did it again and again at any opportunity. 

Then she climbed onto the ledge to then crawl across it (this was the first time so I snapped the shots but we won't let her do this in her nightgown anymore). 

WTH?! Scary!

But really I'm thrilled to have her take some risks because it's only by taking risks that we grow. 

I was reluctant to post this for fear that things will change. My hope is that if we can keep with it she will build endurance and strength. She likes eating. It's just hard work. We may have to adjust our expectations in the future if the amount of effort this takes doesn't improve. But if we don't try she won't just magically make the transition. I want to have faith that her body can be in control of her own hunger and food intake. I think she deserves the chance and I am cautiously optimistic.  

Jan 6, 2014

In Honor of Jack and His Amazing Mom Ann

Seven years ago my world was turned on end when everything I knew changed with the birth of my third child. I was totally unprepared to be the parent of a medically complex special needs child. I was lost. It was the moms at www.tracheostomy.com who were my guiding lights in a period of darkness. One of those moms was Ann Schrooten. Her son Jack Schrooten was dependent on a ventilator and she shared their journey on her blog Jack's Journey and Then Some. Although he had muscular dystrophy and was quite physically limited he had the most beautiful smile and spirit. You could tell how much he was loved and what an awesome mom Ann was! Through her son, Jack, Ann has touched countless lives. She helped so many parents by setting an example, showing us all....We CAN do hard things!
Ann took a situation that many people would find unthinkable and didn't just survive it but used it for good. In her spare time (there is no such thing for moms like Ann), on top of a law career, advocating for her son and juggling his nursing staff and parenting 3 other children she is a founding member of the tracheostomy.com family and an administrator for the tracheostomy.com message boards. She organized several nation-wide tracheostomy conferences. She is founder of the Willow Tree Foundation, which offers support to families of medically fragile children and helps to educate physicians about the needs of families of children with special needs (click the link to this video to see how). Although she sounds a bit like a scary super-human-mom, after being friends for years, in October I had the good fortune to spend a weekend away with her and a couple other amazing moms. She is really one of the nicest people ever! 

Sadly Jack's health started to decline over the past year and he suffered from increasingly more frequent bouts of intense pain between periods of calm. He passed away peacefully yesterday, at age 15, leaving so many people heartbroken, most especially his amazing mom. 

Due to advances in medicine and equipment more and more parents are caring for medically intensive children in their own homes. It isn't easy. People often don't know how to help. If you can please make a donation to the Willow Tree Foundation in honor of Jack and Ann.

I would like to share this video of Jack that was made for his 10th birthday so you too can be touched by the spirit of this sweet boy.

Jan 1, 2014

Happy 2014!

We had a wonderful Christmas and I hope you did too!

Except for the virus that Ainsley picked up the day of Christmas #1, that caused us to have to cancel Christmas #2 (my brother has MD and can't be exposed), lingered through Christmas #3, hit Evie midway through Christmas #4 on Christmas Day and that Adrian picked up for New Year's.   It caused a 102 degree fever, but no other significant symptoms. So each of the kids took turns being miserable for 1-2 days but kids are resilient and they seemed to enjoy Christmas anyway.

Here are the highlights of our Christmas. Late at night after Christmas #3, on the 23rd, the kids planted seeds that Pip Squeak left for them. The next day it grew candy canes and chocolate bars and Pip Squeak used them to make a sled to fly home to the North Pole and debrief Santa on the kids' behavior. I was afraid adopting an elf would be a giant PITA. Thankfully he mostly he just moved from place to place each night trying to find a better place to keep an eye on the kids. There was no TPing our tree, or making messes I had to clean up and that type of thing. Adrian had SO much fun each morning looking for him so I guess adding an elf to the family wasn't so bad.

And real quick, another little bump in our pre-Christmas planning was a SNOW DAY on the 20th. Steve didn't work and the plan was to get the last couple gifts and get all our wrapping done. Instead we had all 3 kids home from school and the major distraction of SNOW.  Arggh!!!

E&A made a replica of Olaf the snowman from Frozen. 

And had snow cones.

It was also the day I took Evie to The PNB Nutcracker.  We bundled up in warm clothes and boots and left extra early, just to find that the snow was melted once you got to the bridge. It was a wonderful mother-daughter night out in celebration of Evie starting pointe this year. She had a great time.

Thankfully by the next day we were able to get around town with no problem. 


Christmas morning the kids found their stockings and gifts from Santa in the living room and we took them into the family room where the tree is. For all the protesting Evie did before Christmas I was so glad the issue of the change didn't even get mentioned. 

It was actually really cozy in the family room. 

Ainsley's best gift from Santa...A set of indoor snowballs....Maybe the best gift of the season. 

Letting loose and having a snowball fight on Christmas morning was SO FUN!

We got a family gift of 3 new fur (faux) blankets. Ours had holes but we fought over them anyway. 
We so needed these!

Ainsley's big gift. A storage center for her "home therapy" toys. (On my New Year's to-do list.)

Adrian's favorite gift. An Ipod so he can listen to music (and play games).

We made the decision to buy Evie something she really needed...a new guitar. The cheap one she got when she was 7 wasn't cutting it. This one will last her whole life. It's also her birthday present (she turns 13 in 2 months). We made her sign a contract in blood that she will never give up playing the guitar. Just kidding! She's just a little bit excited. 

I cooked my first prime rib for Christmas Day dinner. It was delicious. I was so busy cooking that I have no pictures to show.

I think our guests had a great time and having the tree in the family room was great. It was worth the time spent getting furniture and the rug.

When I went to buy napkins I saw a lady buying Santa hats (at 50% off), and confess she gave me the idea to get them for all the kids. It was really fun. Adrian loved it the most. Love that kid's spirit! He slept in his on Christmas Eve.

After dinner we retired to the living room where our family friend Roger, who happens to be Evie's guitar teacher and his wife Christy setup their gear so we could all sing carols. He and Evie had been working on some songs but by this time Evie had 102 fever. Poor kid she was so upset. But after putting on her winter jacket, taking an Advil and a cup of tea she mustered the energy to play a couple songs on her new guitar. 

Ainsley went to her room and got instruments to play along. Grandpa and I took turns helping her to be part of the fun. Bless that girl. She is so sweet! I think this was my favorite part of the night and I hope we have live music at every Christmas from now on!

I admit the best part of Christmas for me is the relief when it is over. My favorite part is just being together as a family. This year we hung out in the family room next to the fire, the kids enjoying their gifts (and Daddy's Kindle). This year Steve took time off. Although there was a last minute business trip to California the prior week for a mini crisis, it was nothing compared to deadlines he faced in years past. He's had a nice break and goes back to work on the 2nd.

Ainsley's LOVES the new beanbag!

We bought Ainsley a temporal thermometer (she hates the ear one). Ainsley and Adrian both had so much fun playing with it. Unfortunately Adrian really had a fever. All 3 kids did this year. Crazy.

It was Penny's first Christmas. We left her presents under the tree until New Years Day. She's a dog and didn't seem to mind.  Just like any "baby" she might have liked the packaging more than the gifts. Actually she got some good stuff that she really needed since dog toys don't last forever, especially during doggy "teething".

Steve made breakfast and we talked about our hopes and plans for the New Year. 

I asked Ainsley and she said this is the year she is going to eat, talk and walk (independently)! Wouldn't that be something?! She's doing pretty well on that first one. A year can bring so many things, good and bad. Last week a fellow trach mom's nine year old daughter passed away. It breaks my heart how many of our special children leave this earth too soon. At the same time several of our other "trach friends" are having serious health issues. As ironic as it may sound, I am often thankful for Ainsley's good health. While I have goals for 2014, especially for Ainsley, my most important goal is to savor the moments. That's all we really have.