Monday, October 10, 2011

Sclero, sclahro. Potato, potahto.

* Warning.  Photos in this post are not for the faint of heart*

"You're just going to have to have faith."  Uncommon words coming from a doctor, but that was precisely what our pediatric radiologist said to me.  We are currently taking a pretty aggressive stance against Maaike's cysts in hopes that we are creating a future for her that is filled with words and food.  We decided to move away from the advice of our local doctor and follow the path that the doctors at Children's Hospital in Boston.  Thus far Maaike has undergone two rounds of sclerotherapy, with 10 to 15 more treatments to go.

Sclerotherapy involves injecting large or macro cysts with different agents so that they then collapse on themselves leaving a skin tag of sorts.  Several different injection agents are used, but one of the more common agents, and the one we are using, is chemo.  Because the chemo is injected directly into the cyst and not in her blood stream she will not have the same side effects as a cancer patient, although some sclero patients do experience hair loss in later treatments.

The actual procedure is done under general anesthesia with the injections guided by ultrasound.  First a needle is used to extract fluid from the cyst followed by a second needle that replaces an equal amount of fluid with the chemo drugs.

The big question: Is it working? The Answer: I don't know.

Immediately following the procedure there is no visible difference.  By the next morning swelling sets in as a natural response to the needles themselves.  Next is bruising and hardening of the cysts which can taken weeks or even months to dissipate.  And finally the ultimate collapse of the cyst.  This far we haven't made it to collapse and so we are striving to keep the "faith" as we push on through more therapies.

This photo was taken in the ER on day 3 post her first injections.  She received 8 injections of Bleomycin in her tongue as well as the sclero treatment of 6 surface cysts in her neck.  We had been discharged the night before from the hospital and woke up the next morning to this.  Over night swelling caused her tongue to split on the right side.  We were readmitted to the PICU and then discharged again two days later.
Here is Maaike another week later.  She is such a trooper!  No feeding tubes.  She went to a Pediasure liquid diet for three weeks until the swelling went down and we slowly introduced soft foods.  It took about 6 weeks to get her tongue back to it's normal large size...or maybe slightly smaller.
 In consultation with our radiologist we opted not to treat Maaike's tongue in her second round of sclero.  I wondered if the pain from her neck injections would be more pronounced without all the tongue trauma, but one dose of Tylenol and a good nap later it was as if nothing had ever happened.  We went home that same day.  Now the question is if we will treat her tongue again or not.

So why would we ever put Maaike or ourselves through all this?  The answer: Hope.  Hope that this will provide her with the best chance at the best life that she could possibly have.  Hope for a life full of words and food.  Hope for a life without a trach.  Hope that one day she will join Trevor Cunningham as one of the kids who made it through the battle with many tales to tell.

Friday, October 7, 2011

Guest blogging

Today I am oh so honored to be guest blogging on This Little Miggy Stayed Home speaking about being a special needs mom and life with our dear Miss Maaike. 

Wednesday, October 5, 2011

To the woman in seat 8C and all "other kids"

On our flight to Boston we were seated next to a business woman.  She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids.  I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement.  She and Sid talked business while Maaike and I snacked and snoozed.  After a while she started to soften.  She wanted to know about Maaike. What was her story?  Why were we taking her to Boston?  She even shared two of her in-flight purchased sliders with Sid.  She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing.  With only an hour left on our flight she decided to make her move and become unglued.  Through her tears she shared about her younger sister, born with down syndrome.  Her sister died just 5 years ago.  She loved her sister.  She learned so much from her.  But, "don't get me wrong," it was hard.  It was hard to have a sister who needed her parents so much more.  It was hard to not some how feel less loved when you require so much less time.  It was just hard.

Next came her plea.  "Be careful.  Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her.  She knew they loved her.  She still rides horses competitively all thanks to her parents.

"But still it was hard.  Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China.  "...and please bless that Mom and Dad will care for us as much as they do for Maaike."  Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task.  We have tried, but there are days that feel like Sophie's Choice.  Last week we missed Kees' only soccer game because Maaike was in surgery.  Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game.  The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.
To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less.  You are not less valued because you need less time.  You are not less important because you are healthy. You are loved.  You are valued.  You are so important to us.  I hope you know how special you are.

Friday, September 16, 2011

The things people say

To the lady at Disneyland who put me in tears: My daughter is not a freak.

To the window washer guy who came to our door: She doesn't just "seem" to have pretty eyes.  Maaike has beautiful eyes and that isn't the only thing she's got going for her.

To the mother at Coy's swim lessons: Don't punish your child for being brave enough to ask me about Maaike instead of just staring.  When you punish him you teach him not to reach out, not to connect, and that there is something shameful and wrong with being different.  Being different is beautiful.

To the other kindergarten mother:  Having a healthy baby isn't the only thing that matters.  What matters is that no matter how they come they are ours to love, care for, and cherish.

To say that we were not prepared for people's reactions to Maaike is a gross understatement.  I could not have fathomed the things that a few people have said.   On the drive home from our Disneyland trip we were at our tipping point.  The pointing, the staring, the waving their friends over to gawk, had brought us to our edge so when we stopped into a restaurant to grab a bite to eat and  over heard a woman say to a man, "OMG. Did you see that baby," we were ready to snipe back, "Maaike do you see that crazy lady with red glasses and ugly hair."  Definitely not our best moment, but a needed release and catalyst for our new stratagem.

Years ago I was moved by the story of a neighbor of ours who had two special needs children.  Their oldest daughter was born with Trisomy 18 and miraculously lived til she was almost 16 years old.  Their 4th daughter was then born with down syndrome.  On one occasion she was out with both mentioned daughters as well as their other 3 daughters when someone pulled up behind her vehicle and yelled at her for parking in the handicap parking when she was obvious perfectly ambulatory.  I think she had every right to lose her cool, but instead she walked over and lead the passenger out of their car and over to her van's side door to introduce her daughters.  They apologized.

Learning a lesson in grace from our neighbor's reaction, our new approach is to step forward and introduce our dear Miss Maaike, because the moment you meet her you can't help but fall in love.  I am still in process of summoning the courage and holding back the tears, but it feels right and absolutely imperative for Maaike to know there is no need to shy away from outside world or fear what ignorant people might say.  Being different is beautiful.

Tuesday, September 6, 2011

Waiting and praying

Tomorrow was to be Maaike's first sclerotherapy treatment.  We had hoped to get things started sooner than later so that her subsequent treatments would not linger into RSV season, but a sight temperature and a sometimes howling cough will push us back another 3 weeks.  While I am disappointed I am also relieved.  The thought of her tongue and cheeks swelling exponentially has me on an anxious edge.  It will come eventually, but that day is not tomorrow. 

Tonight was a battle to keep her oxygen levels up.  Thankfully they have yet to drop below the 80's, but even at just one percentage of deviation the alarm goes off.  I sometimes get to feeling that her machines are yelling at me.  We tried all the usual stuff: up her oxygen, suction, wake her, but all in vain of a restful nights sleep for all of us.  Then came the kneeling and the pleading.  "Please help her. Please help us. Make it so the alarm stops."

I read the entire manual of her pulse-ox trying to figure out how to reset the alarms to go off below 88% instead of 90.  That would help a ton and at those levels there is really nothing I can do, but alas the machine is somehow locked.

Then some inspiration.  A deep suction, down below her trach, and then elevate the head of her bed.  And so far it is working.  We have dropped from 5 to 10 alarms a minute to 5 alarms an hour.  I'm still uncertain about our nights sleep, but I am at least feeling we will get something.

I do not think there will ever be words to express to Maaike in her later years of all we went through, all we felt, and all the sleep we didn't get in order to save her, but even so, even now, it is worth it.

The alarm is sounding.  I must go...

Monday, September 5, 2011

To Boston, to Boston to try a new doctor

Our trip to Boston was everything we hoped it would be.  The specialists at Children's Hospital knew all the right questions and had all the right answers, granted some of those answers were not easy to swallow, but we feel confident moving forward with their recommendations, after all, they have actually seen cystic hygroma before.  Amazing.  The next step will be 3 to 4 rounds of sclerotherapy and then a tongue reduction in the spring.  Thankfully one of the colleagues from the Boston Children's office just relocated in July to our hospital, Primary Children's hospital in July, so Maaike will receive her treatments here.  We will most likely fly back to Boston for the tongue reduction, but one step at a time.

Monday, July 18, 2011

Bringing baby home

I had no idea what I was up against when I brought Maaike home.  Thankfully it is doable, but there are definitely some things I wish I had known before.

1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home.  They are not coming empty handed.  They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies.   When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital.  So have someone clear out a closet. And take home any bins they offer you at the hospital to organize all that stuff.

2. Take notes. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail.  On our first night home the RT didn't leave until midnight.  I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.

3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home.  I was therefore alone in my car with Maaike in the back seat.  Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way.  Don't drive home alone.  I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.

4.  Don't discharge on a Friday.  It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.

5. Just say "yes".  If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it.  An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home.  I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way.  I don't know what I would have done without their generous offering.  We needed every single one of those meals and all the leftovers to make it through that first month.  If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. Just say "yes".

6.  Take time to just be a mom and not your child's nurse.  This amazing advice came to me from another trach mom Somer.  She said, "Remember that Maaike is not as fragile as she may seem.  She is still a baby and will love baby things.  I had a therapist tell me to stop treating Maisy like a patient and start treating her like a baby and it made a huge difference.  I started to remember what my other kids liked at that age and to really play with her instead of just taking care of her."  

7. Take a deep breath and remember this is possible and you can do it!  This can be such an isolating time, but the fact is that you are not the only one who has or will go through this.  After all, I'm here. 

Friday, July 15, 2011

Going to Mecca

The last six weeks felt much, much longer.  I packed.  We moved.  Maaike got RSV.  We tried to unpack and get organized.  We passed Maaike's tracheotomy one year anniversary.  We shopped and tried to reinvent our house.  But mostly we waited.

Our last trip to the hospital confirmed my fears that Maaike's next surgery wasn't years away, but was right around the corner. And though we have been pleased with our local doctors and hospital they have never seen someone like Miss Mike before.  Through emails, research, and phone calls across the ocean we were directed over and over again to one particular doctor in Boston.  As soon as we got the go head, and in less than 24 hours, we collected every scrap of paper, slide, x-ray, and scan of Maaike and sent it off to Boston.

We were told the review would take about two weeks.  At the end of two weeks we could expect a phone call that would tell us if they would take Maaike's case or refer us back to our local doctors.  As usual the two weeks came and went.  We waited and waited some more.

Then finally, last week, they called.  We're in!  When your child has a rare condition you want the best, the very best.  Worshiping in your local shrine is great for everyday needs, but when you are seeking a miracle it is time to pack up and pilgrimage to Mecca.  For now our Mecca is Boston.  Boston here we come.

We will probably be making a couple of trips to Boston this year.  This first trip will be to meet with all the specialists and run some tests.  We are hoping they will take care of her stoma surgery on this trip (to enlarge the hole in her neck for a bigger trach), but her tongue reduction and other treatments will most likely have to wait until the doctors can all confer.

It seems unbelievable that we have a child who's health would necessitate a move around the world and then flights to the other side of the country to get her the proper care she needs.  China is just a distant memory and our day to day life revolves almost completely around Maaike's care, but we are happy.  We are happy to be together, to be back in our house, to be surrounded by people who no only love us, but who drop in, at all hours of the day, without being asked to help.  So while Boston may be our medical Mecca, the location for the Mecca of our lives is right where we are.

Tuesday, May 31, 2011

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.


Sunday, May 29, 2011

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.

Friday, May 13, 2011

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

 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

Tuesday, May 3, 2011

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!

Wednesday, April 27, 2011

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

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.

Tuesday, April 12, 2011

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.

Thursday, March 31, 2011

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?"
"Do you have any pets?"
"Are you a stay at home mom?"
"Do you have any family support in the area?"
"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!

Wednesday, March 23, 2011

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.

Sunday, March 20, 2011

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.

Monday, March 14, 2011

...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)