One year ago today the world changed. Happy Birthday Maaike

My dearest Maaike,

You were such a big baby!  8 pounds 14.5 ounces.  Too big, in my opinion, for an all natural delivery, but it was too late.  Right after your arrival they plopped you on my tummy and I was able to told you for just one moment, but in that moment our bond was solidified and you became mine.  I tried to listen to what the doctor was saying, something about lasers and "its only cosmetic", but I was being distracted by stitches and imaged you had webbed fingers.  Then they brought you to me, your purple lip perfectly pursed. We had no idea what lay ahead of us and, thankfully so, as we had one day together blissfully unaware that anything was wrong.  It wasn't until the next day after your bath that my lotion filled hands would caress a magnitude of tiny bumps hiding in the sweet fleshes of your neck.  You can thank me later for not allowing them to send you to another hospital with a wet-nurse for an MRI.  Instead we held you close and made dozens of long distance phone calls.  Everyone rallied to get you quickly home, your doctors, the embassy, our families, and even Li Ayi.  You set us on a whole new course, a new continent, a new consciousness. Our lives are so much better for it.  Thank you dear Maaike for coming to us.  These next few years may be though at times.  You will have more surgeries and challenges to climb, but today on your birthday let us be as blissfully unaware as the day you arrived and only enjoy each other and the knowledge you are mine.  Happy birthday.

                                                                                                    Love,
                                                                                                           Mom
                                                                                                       

Have trach, will travel

We just got back from our road trip out to California.  It was relaxing, bonding, and, as my husband put it, empowering.  We only had one small snag at the very beginning, one and a half hours into the trip in fact, when I realized that the one thing I had forgotten to pack was Maaike's oxygen tanks.  It was definitely one of those, "you have got to be kidding me!" moments.  I didn't forget the sunscreen for the beach or gummy snacks for the car, but I did forget a major piece of life saving equipment.  After a relay of calls from the top to the bottom of the state, two oxygen tanks and a trach clip where reserved and loving placed in an unlocked vehicle for our after hours pick up in an up coming town.  Disaster averted.  On to fun and games. 

 Maaike only uses oxygen when she is sleeping so we would hook her up to the rental tank and drive as far as we could while she snoozed.

 We kept the pulse-ox in between the front seats to watch her stats.

 The mirror above her seat is an absolute essential.  That way I can watch her pull off her "nose" (HME) while I'm driving and hopefully see where she throws it to retrieve it when I pull into the emergency lane.

On our first day at Disney Coy said we were, "probably the only people here with a kid with a trach."  I said we probably were, but who knows.  On day two we found out we weren't as a little boy in a stroller passed us with his trach and matching suction bag.

I want to be like Mike!

We had another appointment up at the hospital this week.  It didn't go as we had hoped and now we are finding ourselves having to make some really tough decisions for Maaike's future, but more of that later.  One good outcome of our appointment was a little more research that brought us to two beautiful boys who are just like our Mike.

Liam is just a few months older that Maaike and his parents have started a foundation to pave the way for more research for cystic hygroma.  We have been emailing back and forth with his parents over the last couple of days which has been tremendously therapeutic and informative.  To find out more about Liam and their foundation go to http://www.liamsland.org/

 Kody lives in England and is at least a year older than Maaike.  He has already undergone some of the suggested treatments for cystic hygroma and we are anxious to learn more.  You can learn more about Kody at http://www.mymultiplesclerosis.co.uk/million/kody-barrowman.html

Our Puj Video

I'd love to know what you think.

Sunglasses for a vampire baby

Being homebound for the winter did more than perpetuate Miss Maaike's silky white skin.  I never would have thought to anticipate this, but with such little exposure to the outside world Maaike's eyes turn red and watery at the first glimpse of sunlight.  Thank goodness the fashion powers that be make tiny shades for little babes.  I choose the goggle style because I knew that if the frames narrowed her view she would never keep them on.  And yes, they have 100% UV protection!  Her tiny button nose hardly keeps her glasses up, but she didn't mess with them.  I figure she has enough tough things in her little life to get down about so stepping outside is a great time to see that with a little perspective, and some great sunglasses, everything is coming up rosy!

DIY arm restraints - The "Snug Hug"

Seriously, who wants to thing about wrapping your kid in arm restraints?  For what ever reason.  But the fact is, for her own safety and my own piece of mind, at least once a day Miss Maaike is strapped down so I can take care of her trach needs.  Welcome "snug hug."

I graduated college in linguistics so I am a firm believer in "a rose by any other name" would not smell so sweet.  I think that what we call and the way describe things makes a big difference in the way we perceive things. Every parent of a special needs child knows this love hate relationship.  You need the "label" or diagnosis to get help for your child, but you don't want those who help you to see your child as the diagnosis and not look pass the label.  In the same, but obviously lesser light, I don't want to think about binding my child down in arm restraints day after day to manage her care, but I can accept the thought of hugging her snuggly with beautiful fabric to give her the love and care that I need to.

This is a quick and easy project, suitable for beginner sewers. The Snug Hug could also be used to swaddle newborns underneath beautiful blankets or anything else you might dream up.  Let's get started.

The Snug Hug

Materials
1/2 yard of medium to heavy weight fabric
21 inches of sew-able Velcro
thread
scissors

Step 1
Measure the circumference of your child where you want the Snug Hug to fit.  Make sure your are measuring them as they would fit in it with their arms down at their side.  Add 8 inches to that measurement, this allows for future growth.

Step 2
Cut your fabric, folded lengthwise in half, with the measurement from Step 1 by 8 inches down (folded) or 16 inches open. Maaike's fabric was 32 inches by 8 inches (folded)

Step 3
With right sides together sew your long rectangle  around the 3 open sides with a half inch seem allowance, leaving a 3 inch opening at one end. Clip off the seam allowance at the corners.

Step 4
Pulling your fabric through the 3 inch opening, turn you fabric right side out and iron it.

Step 5
Top stitch the 4 sides of your fabric at 1/4 inch seam allowance, this will close up your 3 inch opening.

Step 6
 Cut a 6 inch strip of the fuzzy side of the velcro and sew it to one end of your fabric so that it lays vertically on your rectangle.  I used the "blind hem stitch" but you could use a straight stitch or zigzag or almost any stitch.

Step 7
Flip your fabric over so that you cannot see the velcro you just sewed and lay two 10 inch strips of the tacky side of the velcro on the opposite side and end as the fuzzy velcro.  These two strips will lay horizontally on the rectangle.  Now sew them in place

Step 8
Roll up your Snug Hug how you wish to store it to test where you will place your last 2 inches of tacky-sided velcro to maintain closure and sew it in place.

Ready for hugging.

She is sunshine in my soul

Over the last 6 months, as Maaike has been home bound, my husband Sid and I have traded off Sundays for church.  Its not ideal, but it has its perks too.  The unwritten rule has become that whom ever is staying home with Maaike that week is in charge of making dinner.  Before this ritual began Sid had three dinners in his repertoire:  fried rice, tri-tip steaks, and grilled chicken, each dish being seasoned to perfection.  But it is now not uncommon to find Sid on a Sunday morning perusing the internet for his next master recipe.  But this last Sunday that was not the case.

Sid's oldest sister is an ER nurse and last weekend she and her family moved into a house about 5 minutes away.  She so kindly offered to watch Maaike for us so that we could go to church together.  It was such a special treat.  We got several stares from those who know we can't attend together and I'm sure they were wondering where Miss Miaake was.  We used to sit on either end of the pew so as to corral the kids, but this time the kids were pushed to the side so that we could sit together.  It was sweet...but still a little bitter...we were still not complete.

The service was nice, but the tears came during the closing hymn.  When Sid saw what the selection was he nudged me and whispered, "Of course, it had to be this song."  I had no idea what he was talking about.  He then pointed to the lines of the second verse, "And Jesus listening can hear the songs I cannot sing."  (LDS Hymn 227).  Then the tears began to freely flow.

I didn't know that Maaike would lose her voice with the trach.  Tracheostomies are placed in the trachea below the voice box preventing airflow to cross over the vocal cords.  Another trach mom had clued me into this before Maaike's tracheotomy and so I asked our ENT about it.  He assured me that Maaike would have a one way valve that would all her to vocalize on the exhale, like Christopher Reeves.  Having never been through this before I assumed that it was a different kind of trach and Maaike would therefore keep her voice.  I wont get into it now, but I was wrong to assume.  When I first saw Maaike post surgery and she was back arched screaming without any sound coming out I became frantic that either something went wrong in the surgery or they placed the wrong kind of trach.  The fact is that the one way valve that allows vocalization is on a small "button" (called a Passy-Muir valve) that is place on the end of the trach and we wouldn't even see one for many months and are still only able to use it for minutes of the day.

Life with a speech-less child equals constant watching.  I watch her on a video monitor as she sleeps because I can't hear her cry when she wakes up.  She is never left alone because if I can't see her face I don't know what is going on.  There have been times when she was crying in my arms, but until I looked down at her I had no idea.  As time has gone on I have gotten better at noticing the changing sounds of her breathing.  She sleeps at the foot of my bed and before she is even fully awake I'm up because the pace of her breathing wakes me up.  I still can't tell the difference between crying and laughing without looking at her, they make the same static shushing sound, but as she has gotten stronger she has been able to force air past her trach and make little squeaks.  We have started signing with her and plan to give her language and communication in what ever way we can.

But regardless of notes sung for ears that can hear, I am thankful today to believe in a God who listens with His love to the sweet songs of a very little girl who audibly cannot sing.

Sewing for special needs & spot lights

Before I could take Maaike home from the hospital I had to take a five day training course and then proficiently preform all of Maaike's care for 24 hours without nurses assistance. Each class was 4 hours long, 2 hours in the classroom and 2 hours at Maaike's bedside putting my new knowledge into practice. Day one was practically dedicated to the lifestyle changes we would need to make. I was questioned as follows:

"Does anyone in the house smoke?"

"No."

"Do you have any pets?"

"No."

"Are you a stay at home mom?"

"Yes."

"Do you have any family support in the area?"

"Yes."

"Well, you were meant to be a trach mom."

I wasn't so sure about that, but I was willing to humor her. On day four it was brought to my attend that some adjustments would need to be made in her wardrobe. It is suggested that trach kids wear V-neck tops to allow for airflow around the trach and decrease the likelihood of trach occlusion. Well, it just so happens I sew. On day five I was trained to give CPR with a trach and how to rescue breath via ambu bag. Though practicing on my own child was horrifying I found that my glory days as a lifeguard came back to aid me. At this point I was starting to believe I was meant for this.
I scour the local consignment shops for V-neck baby attire. Sometimes I hit big and sometimes I walkout empty handed, but that's okay, because I sew. When Katie contacted me about sharing our story on film I had no idea what I would wear, but there was no question that Maaike would be wearing something I made. One of my favorite patterns for Miss Maaike is this kimono pattern by Amy at Habitual. It's easy, it's quick, and it's oh so cute. I like to make it out of a knit material because it's softer and instead of having the inside tie together with a bow, like the outside, I like to use a simple snap to reduce the bulk a little. It's the perfect pattern for a last minute baby shower gift or a trach baby just home from the hospital gift. The first one I made took about an hour, but now I can whip one out in about 20 minutes. They are great for pairing with bright leggings, like Maaike's from Target.Miss Maaike is 10 months old today! I can't believe how fast she is growing! 10 months down and 2 to go until we party hardy!

A great day

I'm in love with this face. I just gush every time I see her. Today was a great day. Nothing amazing happened, but we were all happy and healthy.
One of Maaike's therapists came today and she oohed and awed over how well Maaike was doing and how far she has come. Next month Maaike has her 6 months therapy evaluation and I can't believe it, but I am actually looked forward to it. It will be a great reminder of all we've accomplished and worked for.

Our first weekend away with Maaike and her changing table

As we were driving home yesterday from our little getaway I caught myself thinking that life in that moment was perfect. The logistics of taking Maaike and all her gear on a trip seemed stressful, almost insurmountable, and just plain crazy, but with hopes of taking a family trip this Summer it was time to give it a test run close to home. We stayed at a hotel with a little indoor water park just 40 minutes from home. We figured if it got too crazy we could just turn around and go home, but thankfully that didn't happen. Instead we conquered fears, made memories, and proved to ourselves that with a changing table all things are possible. Maaike has never taken a real bath, let alone, gone swimming, but we felt it was important for her to be in on the action too, even if only ankle deep. A trach is an open port directly to her lungs, so you can imagine how Maaike and water don't mix. I have great anxieties having Maaike near water, but it was high time she got to experience a little water splashing.

Sid and I took turns playing with the water rats and tending to the land-locked little lady. It worked out rather nicely and I think we all had a wonderful time.

After swimming it was time for a movie in bed

We discovered a few tricks that will come in handy on our next adventure. First, the princess canopy. Maaike was able to have a dark corner under the hotel curtains while the rest of us took in a little March Madness.

Second, hotel furniture can be moved. We cleared out a lamp, table, chair, and ottoman to build castle de Maaike in this corner.

And third, never under estimate the power of a changing table. Back in July we put wheels on her changing table so that it could be wheeled throughout the house when she had to be attached 20 hours of the day. Now she is only hooked up when she is sleeping, but the wheels came in handy once again. It was so nice not to worry about disconnecting everything, finding a place for them to sit, and then reconnecting everything. It was a simple unplug, plop it in the back, wheel it into the elevator, and plug it back in. We are hoping to find a smaller cart for our summer trip as the changing table takes up almost the entire back of the van, but lessons learned and mission accomplished.

...and so the China dream lives on

I have been cruising the "Moms of special needs kids" blog scene over the past few weeks. Sometimes I get that "you know just how I feel" euphoria, but most often I end up in tears. I am so proud to be Maaike's mom, so proud of her, so proud of how far we have all come, but still longing for her to have a "normal life."

At dinner every night we have a little tradition of sharing our best and worst of the day (stole that from the wonderful Darringtons). It has been a wonderful way to get into my kids heads and learn about how they view the world. Coy is usually the ring master of the event and starts by describing a family member. Then we guess who she is describing and that person shares their best and worst. Maaike gets to participate too. Sid or I will be her spokes person and picking out her best and worst events of the day are usually pretty easy. Worst= throwing up, a common event. Best= wrestling with her Dad and siblings. Worst= crying through physical therapy. Best= bath and massage time. Being home bound for 6 months of the year it has been simple daily traditions at home that have kept us going.

I love sharing our best and worst of the day. I love when my kids say their best part of the day is "right now!" (i.e. having dinner together as a family). But I have a tinge of pain in my heart when it is Maaike's turn and she is described for the guessing. "This person has a trach...has a purple lip...breathes through her neck...has a huge tongue..." All these things are true and there is absolutely no maliciousness in Coy or Kees' descriptions, but I am trying to mentally brace myself for the things cruel and ignorant kids (and adults) sometimes say.

When parent of kids with special needs say, "I wouldn't have it any other way" I don't get it. Maybe I will feel that way in many years as I look back on how things have worked out, but I would have it another way. I would have Maaike not have to go through trach changes, surgery, and the stares of strangers. I would make it so our family could go to church together year round and not have to divide up for every activity. I don't want Maaike to have a nurse follow her every second of the day when she goes off to kindergarten... but the fact is that if this is what it will take to have her with us then we will roll up our sleeves and gladly do it, but I do wish she could have an easier way.

Maaike is napping right now, hooked up to 4 different machines, and blissfully unaware that the rest of us don't snuggle with tubes and wires as we snooze, but that wont last for too much longer. Soon she will start to realize that there are extra steps in her day and challenges the rest of us don't have to tackle. Oh baby girl, may we raise up to have patience with your differences and the confidence to share your beauty.

One of the last questions I was asked during the Puj-filming was in effect "Why the dream of moving to China and how has that changed?" In that moment an answer I had never before considered came. Personal revelation if you will. Part of moving to China was to open our children's horizons, let them see and experience first hand how other people live. So many of the other parts of the China dream have now fallen to the wayside, but through Maaike our children will still see and experience first hand how some other people have to live. They will know that differences are not bad, but endearing. They will see that we can all look different and still be beautiful. And hopefully they will feel empowered to accept the good in others and help lighten the burdens that are heavy...and so the China dream lives on.

(this is the one and only photo of the five of us taken in China)

Taking a bath

Over the Christmas break I fell into a giveaway addiction. I was determined to win a piece of furniture so we would have something to move into our home. Well, I didn't win any furniture, but I did win a Puj Tub! If you haven't heard of them before I can honestly tell you they are awesome! I randomly clicked on a link for a giveaway that brought me to, the inventor and founder, Katie's blog. Winning the Puj Tub wasn't just a nice win for us it was a revelation...a miracle.

If I am starting to sound over dramatic you must realize that I have a daughter with a plastic tube sticking out of her neck that provides direct access to her lungs. The thought of her slipping or rolling over in a bathtub is terrifying, so we stuck to simple sponge baths at the sink. Enter Puj.

Puj has been all over the place lately, like Ellen and Rachel Ray for starters. It's amazing to me I had never heard of it before...until I won one. I was so pleased with the product I emailed the above photo to Katie with a little thank you note. Then, about a month ago Katie contacted me, asking me if we would be interested in participating in a short documentary about us. I agreed and 3 weeks ago we had a living room filled with lights and cords and a camera. It took about 4 hours start to finish and that will be boiled down to about 5 minutes. It is currently under production and should be ready in a week or two. Crazy huh.

I don't really know what will become of it, but I hope it can serve as a spring board to connect and uplift mothers. I think the Puj could benefit so many other special needs babies that struggle with bath time. I'll let you know when the film is done. And soon I will post Maaike's outfit I made for the shoot, after all, I sew.

One year ago today

Its a bitter sweet anniversary, one year since we left everything we knew behind and embarked on an adventure of a lifetime. We have so many cherished memories from our time in China. We made life long friends, experienced the treasures of civilizations long gone, lived the big city life, and at least partially fulfilled a life list dream. Here are some of the best and worst of our Beijing days:

Worst: the flight to China on March 4th, 2010 Kees threw up all over himself at airport check-in and again and again as we flew through the air, checked in at our hotel, and moved into our apartment. In the photo below Sid and Kees are watching a movie between visits with the barf-bag. Notice the keyboard is covered with plastic-just in case.

Best: Watching our kids love and explore a new culture.

Coy loved to try to eat with chopsticks,

while Kees liked to use them for poking and stabbing.

At first it seemed impossible to find things they would eat,

but it didn't take long before they found their new favorites.

Worst: Commuting with 22 million people

This photo is Coy and Kees in the stroller on the subway

on our way home from the zoo. We purposely keep them

in the stroller so people would not squish them. Sid would read

books on his way to work by holding his book up at face level

with someone jammed under each armpit.

Best: Li Ayi our maid

This is a picture Coy drew of Li Ayi, her, me, and Kees (in that order). It really was as awesome as you would think. Everything in my closet was washed, ironed, and ready to wear. Kees' relationship will Li Ayi would go down hill as she became his non English speaking nanny while I was away in the US, but just yesterday he told me that he missed her.

Best: Hunting for Western products at the markets

Shopping at the markets, even food markets, was really fun. First there was the competitive element of trying to get the absolute lowest price. Then there was the feeling of being on a treasure hunt, never knowing what you would find. And it certainly was always nice to find a little piece of home, like syrup for pancakes.

Worst: Buying meat that was hanging outside

We never got sick and this is a common occurrence the world over, but we Americans like our meat in styrofoam packaged saran wrap.

Best: the fruit!

This little market was just outside our apartment complex. We would stop there on the way home from picking Coy up at school.

The mangoes, oh the mangoes! Juicy, sweet, divine.

Worst: Taking Coy to school

This is one of my favorite photos. We had to fight traffic and cross a major freeway to walk Coy to school each day. I usually walked the kids alone with the stroller, but on this day Sid made the journey with us. This was a worst because on most days Coy would cry as we left her at school. We felt terrible, but knew it would only be a few months before she would start picking up the language and make some friends. Unfortunately we didn't stay long enough to get to that point. Sorry Coy.

Best: Taking our kids on epic outings

We tried to have a family outing once a week. In the short time we were there we managed to make it to all the major sights and then some. Sid and I got to premier a documentary on China last week that Sid had a small part in. As the film flashed through Beijing it was an awesome feeling to know that not only have Sid and I been there, but we went to those locations as a family.

Worst: Never getting to say good bye

We loved our time in China. It's hard to pinpoint why. Maybe it,s because it was a dream come true for Sid and me. Maybe it,s because life seemed so free and easy when compared to the trials that came after. Or maybe it,s because we grew so much together as a family. If I had any idea I wasn't going to get to make my round trip flight back to Beijing I would have done a few things differently... like some major shopping, not put Coy in school and bring the kids back with me.

One year ago today we tearfully said good bye to family and friends in the States and set out to change our lives and live our dream. Today I finally feel ready to tearfully say goodbye to China. Maybe we will go back again someday, but if not, we had a great ride. And for now we will continue to write new dreams as a family of five.

New dog with old man tricks

Maaike has started to pull her tongue in more and more. We are hoping that is because it is decreasing in size. It seems to be, but it's so hard to tell. About a month ago we had a little scare when one morning we awoke to find her over sized tongue had swelled up even bigger. It was so big that she couldn't pull it into her mouth at all and it was dry and cracking. We followed her around with little wet medical sponges to try and keep it moist until we go her up to Primary Children's hospital. Many terrible things came to the table with the discussion on possible treatments, including removing the front portion of her tongue, but it was found that she also had an ear infection and there may be a connection between the two. Some of Maaike's cysts are lymphatic and could therefore become inflamed in response to an infection like a lymph node. After the appointment we picked up the prescription and said a prayer...and it worked! In just a couple of days her tongue was back down to it's usual size and now seems to be even smaller. It is such a joy and relief to see her pull her tongue into her mouth. We love it, even if she looks like she forgot her dentures.