Love is..

.. losing track of time when you are together.

This little girl has something special, that makes anyone love her. I don't know how she does it, but you must love her. There's no other option. I'm so happy she was born in such a loving family. That may be obvious to you, but it isn't. I have seen different situations.. Needing people around her who care for her and who love her for who she is, this little Princess is growing up in the most loving environment ever. Surrounded by family, friends and caregivers, she's happy and nurtured.

I got pretty emotional, reading this letter from her parents. I was not the only one.. Grandma's eyes teared up as well. Fantastic people and wonderful parents to both little Princess and her brother..

All caregivers are invited to a pleasant night out in a nearby restaurant. It's their way to show their gratitude for looking after this beautiful child. It takes a team you can trust and build on, to make sure there's always someone there to help out. I'm lucky I can be part of this team. I'm lucky to have little Princess in my life.. Because she teaches me about true love..

That is music to my ears

I went completely nuts! My computer refused the password I typed to open my account. I tried several times more, but it kept ignoring my attempts. Aarrgghhhh! I truly suck when it comes to being patient with computers. They only do what you tell them to do. They do not have a mind of their own as I may think. So calm down, take a deep breath and try to figure out why it's not accepting my password.. My daughter asked if I had spilled something on the keyboard. No??? Hubby opted the possibility that one of the letters wasn't working properly. As if.. But I typed the password letter by letter and honestly: the E and the D didn't appear on the screen. I tried the rest of the buttons and the 3 was a no-no as well. One would think the next in line - the C - wouldn't work either, but nothing was wrong with that key. Hmhm.. that was tricky. I was lucky to have the iPad within reach so I tried to look up the problem and the possible solution. I read I might need a new keyboard. Some stupid cost of 70 euros.. pfff... Darn. And how long would it take to have that fixed??? I need my laptop! I know it's getting older and I know its best years were some time ago. New laptops cost money though. My cell phone needs to be replaced as well and hubby needs a new car and the kids want to go to Bali.. Aaarrrgghhh... money money money. It's always about money.

A friend read about my frustration on a social network site. He asked me to calm down and see what the problem was. Sorry, but I'm a total nitwit when it comes to computers in general. And as I have stated before: I have no patience at all. He asked me to get my installation CD's and see if they could solve the problem. I was a bit too fast and kept clicking MOVE ON because I wanted the problem to be solved ASAP. That was not the plan. He was giving me guidelines and I was supposed to hear him out. So we started again. The girls were giving me this look like as they wanted to say: mom, that keyboard is so old, it just needs to be trashed.. But hey!!! why not give those CD's a chance to see what they could come up with?

It took a while and I needed to install that second CD twice, but hey! Guess what!!! My three failing keys are working again!!! How about that? I didn't need to panic at all. I didn't need a new keyboard. This notebook will last some more months before it finally decides to quit for good. I hope it will give me the time to look out for a decent replacement. Now let's get some updates and install the programs I'm still missing. I'm happy I'm no longer cut off from the rest of the world.

Only you know me

Photo by Lana Joos

You asked if your two best friends could come over to spend the night in our backyard. One of them would bring a tent and you would have dinner together earlier that night. Sounded just fine by me! No problem, on the contrary. It's great to have your friends over and see you enjoy their company. I know you confide in them and you tell each other all your secrets. That's good. We all need friends we can trust and we can talk to. Girls don't have to tell their parents everything. That's what friends are for.

It was around midnight before you went off to the tent, flashlights in your hands, your tummies filled with food and dessert (I hope nobody will vomit in the middle of the night).
The whippets wanted to join you and keep you warm, but one of your friends is not to keen on having the dogs in the tent, so they will stay in their bench in the kitchen. I'll keep my fingers crossed that the thunderstorm will wait until tomorrow to torment our neighborhood. Or we'll hear three young girls scream their lungs out... Have a very good night. But first talk till your voices have faded away... Embrace each other and enjoy the company.. These are times to remember.

Photo by Lana Joos

Before you say "I do"

We got to know each other at the age of 16 - 17, I guess. We worked in the same amusement park during the holidays. I had been working there for a while, when you got in on your first working day. I thought you were pretty special. You were bilingual: Dutch and French. I liked that. You were goodlooking. I liked that too. You had a great sense of humor and I looked forward to having a good time with you. We became friends real fast and we liked to hang out together at work. At a certain time, our friendship turned in to a relationship. We were good friends and we were good as a couple. We didn't cling too much though. There was plenty of freedom in our relationship. Sometimes we hung out together, sometimes we didn't. I liked to hear from you. We didn't have cell phones nor Internet back then. I don't really remember how we kept in touch. I wasn't allowed to go out yet so seeing each other wasn't easy. We went to different schools in different towns and your hometown was no more than a 15 minute drive, but we couldn't meet up in each other's house either. So getting to see each other was quite an organization and pretty exciting. You were my first real love.. I loved you for so many reasons. But I always knew we were never going to get married. I thought you were too goodlooking. The girls turned their heads when you walked by to take a second look. You were no brat or show off, you had no attitude about it. You were just you.. a very good friend and my big love...

I went to Highschool and we lost track of each other. I never forgot you though. I can still smell your perfume and a smile appears on my face when I think of your broad smile and sparkling eyes. I'm over you, don't worry. A certain moment and an unexpected encounter made sure I got over you. It's just that your first love will remain special for the rest of your life.

Every now and then, we read things about each other on the social network sites. I could see you were in a relationship and the girl you were dating was really your type. But then you announced your wedding, the morning of your wedding day. I was amazed! OMG! You were really getting married! Do you remember how we would say: never get married before the age of 40? I never thought you would actually take that as a fact. You're turning 41 November 27th. A good age to settle down and enjoy your wife. I wish the two of you all the luck in the world. You will always be in my heart. Because that's what happens with your first big love. They remain in your heart forever..

A profound sense of peace

The exams are over.. Finally. There were some stressful weeks and you got more tired by the day. Your eyes were all swollen and red and I could tell you could do with a bit of extra sleep. You did the best you could. Nothing you can change now to influence your grades. All you can do is wait and see. Just let that sense of peace affect you and relax. There's no need to worry. I'm sure you did just fine. We'll know soon enough. And we'll move on from there..

Just like that

The last time we went to the movies, was ages ago. My sister-in-law told me about De rouille et d'os and we wanted to check it out. Wow.. Matthias Schoenaerts really is something else. What a strong personality. The combination of him and Marion Cotillard is just perfect. I'm so happy we went to see this movie..

Put in charge of his young son Sam, Ali leaves his hometown to go live with his sister and her husband in the Southern part of France. That's where he meets Stephanie, a killer whale trainer. Their bond grows deeper after Stephanie suffers a horrible accident..

I thought the movie was very touching. And I can check that on my glucometer. The exciting part gave me a hyped up 215 while the moving part turned that number into a pathetic 38. It is interesting to see how my BG interferes with what's going on around me. But it would be nice, for a change, not to have the diabetes play a role in a night out.. Going to bed with 92 and waking up only half an hour later because your BG has dropped to 44 again, is no fun. Sometimes you are not welcome, Die-abetes...

Muy bueno

I'm still not the sporty person my doctors would like me to be, but I must admit: going outdoors to do some geocaching is a big hit. Looking forward to any occasion, I leave my hiking boots and thick socks in the car. The whippets are all hyper for they know they can come along. Lana loves to "prepare" them (read: make them crazy!) for their day out, so they are totally stressed out by the time we leave. They are too nervous to eat their breakfast and they don't like to eat in a different location, so when we get home late at night, they are starved..

Friday was a wonderful day. Although the rain washed us out numerous times, the sun warmed our heads and dried up the wet shirts. I think the five of us make a great combination to do this game of sports. I'm not of much use, since I still don't understand the rules (no I won't read the guidelines), but I love to observe the interaction between my friends. How they discuss coordinates, how they compare their mobile devices and GPS systems. I'm not clever enough to solve the mathematic formulas and it amazes me how good they are at it. Each one of us has its role in the game. Still trying to find out what mine is... LOL.

Money

Photo Lana Joos

Money can buy you the most beautiful dog, but not the wagging of its tail..

Today is your birthday, my lovely Rebba-girl. You turned 6 and you are happy as ever. Always ready for a cuddle and a hug. You are so loyal. Not always obedient, but whippets are supposed to have a mind of their own. I'm so happy you came to live with us, that September 1 2009. We can tell you like your new home. You have your favorite spot on the couch. Did I tell you that you are so good at making me smile? Just the other day, it was hilarious to see how you nibble little bites of a cookie that I held up for you. You are still my little baby.. Hope to have you with us for many, many more years..

He called me a Minx????

I remember the first time I met JayJay. I had just visited my diabetes nurse in the hospital and leaving her office, I saw this young man reading a magazine in the waiting room. He was dressed real well, his hair all black and shiny, skinny jeans and shirt ironed perfectly and wearing flip flops. Know what I mean? Exactly.. My nurse asked me to wait a little longer, because there was a diabetes workshop a little later that day. So I chose a comfortable seat in the waiting room, opened my purse and looked for my book to read some more.

Shortly after that, my nurse left her office, accompanied by that same young man. I saw them coming right at me. She left the man beside me and we introduced ourselves. I invited him to join us for the workshop - after all, we shared that same D-sease. He refused at first, because Sales started that day and he wanted to do some shopping. The workshop was not going to start for 2 more hours, so he had plenty of time to shop. I didn't expect him back though, because he was a bit reluctant to join in.

When he entered the meeting room, disturbing the crowd, presenting himself by: anyone willing to see what I bought?, I became his number one fan that day. Hahaha, what a great guy! I offered him the seat next to mine and let him babble. Because that's what he does: he babbles, he's witty, he's good looking and fun to be around. His Indian roots make him even more interesting.

Without knowing, we shared a mutual friend. Another diabetic.. Can't believe so many friends of mine are diabetics! So we thought it was a good idea to do some shopping together, in Antwerp of course. Where else? We had a wonderful day. A day we wanted to do over some time later.

I was talking to JayJay the other day, when all of a sudden he called me a Minx. A what? Exactly, that's what I said too. I had to look it up. See for yourself. And it's okay. He can call me a Minx. It flattered me somehow, hearing it from his mouth..

One on one attention

That's what I would really like: have a one on one attention day. What do you think? Are you ready for that? Or would you rather go out with your friends? It's up to you. Just tell me what you would like to do. I have some ideas, but I'd rather hear you make a suggestion or two. Just think about it. Not for tomorrow. You have some more exams to focus on. But next week maybe? I'm looking forward to it. A mommy-daughter day.. wouldn't want to miss it.

A confidence boost

Your little girl was diagnosed as a toddler. You had no idea what to expect, but you knew it was chronic. There were two older children in the house, but most of your attention had to go to this little cutie, who needed her mommy desperately. Waking up in the middle of the night, to poke that tiny finger and check her blood glucose. Being so careful not to wake her, because she needed that sleep so badly. Not getting a break, because you didn't trust anyone with her. Only you knew how to treat her, you knew how to discipline her and make sure her numbers wouldn't go out of line.

She grew up to be a very sporty girl. As a gymnast, she did real well and you were so proud of her. She's a clever cookie and her mouth is full of words. Not always the easiest child to work with, but you did the best you could. Never a day out for yourself. Always home for your daughter, to make sure she was okay. But the little princess got bigger and became more independent. Things changed in your life as well. You moved house and your children got a new baby sister. You were a bit lost and things were pretty hectic for you. I heard your cry for help. It's not easy huh.. you could do with some time off. If only that were possible..

I'm meeting you this afternoon. It's been a while. Haven't seen the little princess yet although she's already 2 months old! Shame on me! Get that coffee ready so we can have a chit chat. You'll be fine. Don't worry. You'll be fine.

That is totally understandable

Photo Lana Joos

Of course you miss your  friends from boarding school. After all, you have lived with them  for 2 years. Times were different back then. You were in a different school.  You were younger. You were in Highschool for the first time. Making new friends is no problem for you. You are outgoing and sociable and you attract other people easily. Look at the three of you! Best friends and that didn't take you long. But yes, you still miss your old friends.. having shared so many adventures, it must have been hard to leave them behind. Not many remained in boarding school. They chose other schools, just like you. In a couple of weeks, you're going to summer camp and that's when you will meet up with your old friends. That'll be such a fun time for all of you. Time to catch up and tell them all about your new life. It's not easy to be 15, you know. I understand. I really do. I was 15 once, remember? Long time ago, but I remember what it was like to change schools and leave your friends behind. Back in those days, we had no Internet nor a cell phone to keep in touch with your friends. But we managed. Just like you do. I'm happy for you, that you are so good at making friends. It says a lot about you. It's heartwarming to see you get along so well. Hold on to your friends, cupcake, for they will help you grow stronger.

Sit back and enjoy the ride

About three years ago, I took care of a young lady, pregnant with her first child. At the age of 6, her life changed completely when she got sick. The diagnosis said Friedreich's Ataxia. It was not a very hopeful diagnosis, certainly not if you get it at such a young age.. I got interested in this condition and searched the Internet to get more information. That's how I met Paula and Tom Hook from La Porte, Indiana. United States, exactly. They have three wonderful girls. Two of them have FA, just like Jody. They got diagnosed as adults, meaning the disease won't progress at the same speed. Paula and I have kept in touch over the years and every now and then we mail and tell each other more about what keeps us going. On several occasions, she has invited me and my family to spend our holiday at their ranch. That sounded so appealing! Unfortunately we have not been able to go see them yet. One day... one day...

You had a dream from the day you turned 12. You promised yourself, that one day, you would go to the United States. I recognized that feeling, because I shared that same dream. We discussed this dream on several occasions. It was hard for you to believe that dream would come true. Until the plans started to get more concrete. I introduced you to Paula on Facebook. The two of you got acquainted and you liked each other. You told her about your dream and your wish to improve your English. You were looking for a job in exchange for room and board. There's always work on a ranch... and there's plenty of space for you to stay. If you know what I mean..

You're leaving July 10th and you won't be coming home till August 6th. It will be your first trip abroad, your first flight, your first time away from home on your own. You will love it. All excited and hyper, you will get on that plane. Your heart will be pounding way too fast, just like mine did 20 years ago on my way to Portland, Oregon. It will be an experience of a lifetime. You are lucky this family will welcome you into their home. They are lucky to have you over and experience a wonderful time with you.

Sit back and enjoy the ride. Open your ears and eyes and let all of your senses indulge the United States. It's not a coincidence you ended up with the Hook family.. before you know it, you will be "hooked" to the States.. Keep us informed, okay? We expect no less than 1 blog a day, to hear all about your adventure.

Whatever you are, be a good one

The first time I read this line, it instantly made me think of you. You have so many activities going on and whatever you do, you do well. It's the attitude I guess. You like to give all of your attention and energy to what you do. It's a pleasure to hear you talk about your hobbies and what you do to please others.
It's already June. Half of this year has passed and we have not got together as often as we use to. Things have been hectic I assume. But we'll get there. It's about time we ask you over for a drink and a bite. What do you think?
Your birthday is a good occasion maybe? Not that we need an occasion to get together, but why not celebrate your special day with us? Would you like that? Just give it a thought and let us know when you are available again and then we'll set a date.

 Happy Birthday my friend. Out of sight doesn't mean you're no longer in our hearts.

In the moment

This is pure joy, an absolute delight. I love fine dining. Our oldest daughter had the day off and we decided we were going to do some shopping in Antwerp. The weather wasn't with us, but that didn't stop us to visit the shops we wanted to see. Our fingers were hurting from carrying too many bags and our tummies were screaming for some food. My eyes spotted a menu we couldn't resist, so we entered the wonderful world of Café Imperial. An amazing building (would Napoleon really have been here?) and being welcomed by a very polite host, was a perfect opener for this lunch. We were looking for a light lunch. The appetizer of silky soft smoked salmon on a blini with sour cream and caviar, a small piece of toast with foie gras on a compote of fresh figs and the flavor of the sea while sipping those oysters, was delightful to say the least. It made our taste buds long for more. Lana had her bagel with smoked salmon and cream cheese with fresh chives, while I indulged my tataki and tartar of yellow fish tuna and wasabi sherbet. Don't you just love these outings? I had promised Lana dessert at Roger van Damme's Het Gebaar, right down the street. We had to shop some more before my friend could join us for coffee. I love these outings with my girls. Our other daughter was in school today, but her shopping day will only be delayed, not canceled.

It was a brief walk to Het Gebaar. The place was packed and we were seated on the bench before our table was ready. My friend arrived just in time to join us. Since he lives in Antwerp, he hopped on his bike and it took him no more than 5 minutes to get there. My daughter noticed his insulin pump and I told her his numbers are within range most of the time. And I truly mean: most of the time. He's a wise man and he decided to skip dessert and have a Doppio instead. I was too curious to see these pieces of art, so I did order dessert. My choice was The Botanique, a true chocolate adventure. Too rich for me, but I'm glad I had the chance to taste it.

Lana opted for The Cosmo: banana, chocolate and lots of sugar.. A pleasure for the eye and it was definitely worth the smile on her face. I'm glad Roger Van Damme left his kitchen to mingle with the guests. He's shorter than I thought, but very kind and down to earth. It was special to be here and enjoy these dishes of sin. I find it very hard to estimate carbohydrates in desserts and my numbers weren't happy at all, but I truly enjoyed it.
We had good conversations and a very pleasant day. To be continued..

is it okay to be gay?

Over the years, different people have crossed my path. Men, women, older people, younger people, single people, divorced people, families. Each one of them with their own personality, their own preferences and choices in life. I love meeting all different kinds of people, because I'm sure they can teach us so much about life and love.

Some of my friends are straight, others are gay. I even have a girlfriend who loves both men and women. Big deal. Who are we to judge? They are who they are and I hope they are "man" enough to live up to their believes. It must be horrible if you must live your life a lie, because you can't tell your friends or family who you really are.

There's this program on Dutch television: Out of the closet. I like to watch it with the girls. They have no problem with gays either. Why would they? After all, it's not like your preference for men/women is something you can choose, is it? And even if it were: who are we to dislike you for being who you are?
On the last show, this guy was going to tell his friends and family, that he fancied boys. The reporter asked his friends what they thought of gay people. Let's say their comments were not really flattering. Going from: I don't like gay people, over: I don't mind as long as they keep their hands of me, to: I would turn my head if I would spot one. Then this young man tells his friends he needs to make a confession. One of his friends jokes: now don't tell me you're gay! The silence in the room was nerve wrecking. The young man asks his friends to hear him out and he tells them about his preference for men. One of his best friends instantly says: then I have nothing left to say to you.. That really broke my heart... How can your friendship change because of someone's sexual preference? Nothing wrong with that. It's not some disease you have to get over. It's not a choice you should change. It's a preference. It's about love. And it's not nasty. How can love be nasty? Yes, I get all hyped up if people say stupid things like that. I love my gay friends. They are very nice and loving and caring. Wouldn't want to miss them..

Shopping for men

This one is for my special friends. I was amazed to say the least, when I saw this documentary on Grindr. Wow.. a social network especially for men.To be more specific: for men shopping for men. Grindr is the perfect way to find a new date, a buddy or a friend.
Grindr is quick. Grindr is convenient and most of all: it's discreet. And if you want it to be anonymous, that's what you will get.
But what is it??? Well, it's an app that uses your mobile device's location-bases services to show you the guys closest to you who are also on Grindr. You decide how much information on yourself you are willing to reveal. Soho seems to be the Mekka for Grindr fans. So if you are looking into testing out the app, don't be surprised if some total stranger comes up to you to say hi and sign you up for a date!

Log Book

00:24 AM 64 Time to go to bed, munching on two Maria cookies.
08:20 AM 179 Roll out of bed and have some breakfast.
11:03 AM 187 number too high. Don't like it. Let's change that infusion site.
12:41 PM 287 That's not what I asked for!
1:59 PM 216 what's going on? I did count my carbs!
5:35 PM 303. Darn. I don't have a clue where that BG came from. I ask my insulin pump to correct that number and we have dinner.
7:16 PM Time for dessert. I'm not feeling better yet and I decide to change my site again and open a fresh bottle of insulin as well.
8:20 PM A diabetic friend texts me to ask for the mail address of his diabetes nurse. I have a hard time focussing and it has become practical impossible for me to text him back.
8:30 PM I'm not feeling well at all.. I'm losing control over my body. This is the time where both my daughters come to the rescue...
-------------------------------------------------
8:44 PM An alarming 23. The girls grab my cell phone and call my diabetes nurse. They tell her what's going on here and ask her what to do. They remain calm and do as she asks. They detach my insulin pump from my body and feed me two sachets of pure glucose gel with a spoon.
8:45 PM 27. I have no idea what's going on. I'm sweating like crazy and I'm terribly cold. The girls take care of me and cover me up in blankets.
9:04 PM 73 My diabetes nurse calls the girls every quarter of an hour. She asks how I'm responding to the treatment and wants to know if I'm talking or answering their questions. The girls give me another sachet of glucose gel and two small cookies. I am aware of my daughter reading labels and counting carbs. She won't give me more than 2 cookies, for she doesn't want my numbers to skyrocket.
9:22 PM 64 I'm going down again. I'm so cold. The girls help me get undressed and put me in pajamas. They light the fireplace and give me another blanket. The whippets try to keep me warm as well. Rebba puts her head in my neck and her warm breath feels great. Inthe finds her spot under my blanket and keeps my knees warm. One daughter is stroking my hand and talking to me in a soothing way, while the other is on the phone with my nurse.
9:37 PM 85 time to hook up my pump again and have 3 more cookies.
10:00 PM 88 terrible head ache and still cold.
10:38 PM 76 two more cookies.. I'm so tired..
11:22 PM 168 I would normally give a correction bolus now. I'm not going to this time..
11:46 PM 167 time to get some pain relief for that pounding headache and climb the stairs. I couldn't keep myself from correcting that number though...

I realize how wonderful my girls are. They didn't panic but acted like true nurses. They took care of me in the best way possible. I'm so proud of them! I'm sorry they had to go through this hassle, but I guess that's also part of diabetes. Love you girls... thank you  so much for caring and coming to the rescue. Thank you diabetes nurse, for guiding them through this episode..

Reach out and touch

Today is a day I tend to celebrate. For just one decade, I can call myself a sugarbee. Is that an honor? Probably not. Is it a diagnosis to feel embarrassed about? By no means. Was it my fault? Na-ah. Did it affect my life? For sure..
Even though I can't remember what my life was like without D, I remember my life wasn't the emotional rollercoaster it is nowadays. It has changed me. It has affected my family. It has brought me feelings I had not experienced before. Think f.e.a.r. I don't like to pronounce the word, since I don't like to be scared of anything, but yes, at times it scares the lightening out of me.
Let's go back to the day my endocrinologist (well from that day on, she became my endocrinologist - I never needed one before) poked my finger and decided I had Type 1 diabetes. To me, it didn't come as a complete surprise. To be honest, I was relieved. Finally a doctor who didn't think I was making a complete fool of myself thinking I had some weird disease. She knew it was diabetes and that it was serious business. I don't know what made her decide that I needed to see some footage on the possible complications of this chronic disease, but I can tell you: that documentary freaked me out. The images will remain present in my brain forever, I guess. I will spare you the details, but my diabetic friends know what I'm talking about.
So many people are proud of me for being so positive when it comes to diabetes. Well, there's not really another option, is there? I have my bad days and I have my flaws, but those keep hidden behind closed doors. I'm not the type of person that bursts into tears at home for not coping well. I try to keep it to myself or share it with other diabetics, who are real close to me. After all, they are the only ones who really understand, because they are in the same position. I need those conversations, I need those moments where I can fall apart and cry over a disease I never asked for. I'm only human, just like the rest of you. Writing this blog, I can feel the tears sting behind my glasses. I don't want to cry. I don't want to break down without an arm around my shoulder. So I swallow my tears and I revert this blog to draft until I'm ready to continue writing..
I do want to celebrate this day. So far, there are no complications. The always present fatigue is not painful, just a nuisance. The daily fluctuations wear me out and it's a fulltime job to keep my numbers within range. Not knowing why your numbers have risen too high, is so frustrating. They sometimes make me wanna yell and scream my lungs out. I really try hard to remain one step ahead of complications.  It is my responsibility, my disease, my obstacle in life. I have a hard time sharing my feelings - oh oh, there come the tears again - when it comes to D. If you have offered me your shoulder, if you have texted me on days where my numbers skyrocketed or if you helped me get over diabetic issues: thank you for being there for me. I hope I can be the same kind of friend to you.

Ride for Ataxia Chicago

Our daughters Kati and Carli were diagnosed with Friedreich's Ataxia. Having the disease for several years now, they are ready for a cure or at least treatment. With many other brave people who have FA they have taken on the tasks themselves to HELP find that treatment/cure. They have participated in studies and have been to several fundraisers. This is considered an orphan disease, since there are about 5000 people affected with FA. So please, we need all the help we can get. If you can't ride think about a donation. Together we can defeat FA. Thank you!

This is what Paula Hook wrote for two of her beautiful daughters. She never expected her girls to get this awful disease. It is affecting her family and there is no cure nor a treatment to make them better. Look at them. Let your heart speak and help them raise money to get a cure for FA.

Paula and her husband Tom are wonderful, generous people. They are a loving family and very much involved. They raised three beautiful daughters and they are crazy about their grandchildren. Living in La Porte, Indiana, Chicago is not that far off. The Chicago Ride for Ataxia is very important for them. Raising money is never easy. If that money could help find a cure to heal their girls and so many others out there with FA, they would be the happiest people ever. Please help Paula and Tom raise as much money as possible, so they can guarantee their daughters a quality life..

I won't let you down

Photo Eva Joos

Photo Lana Joos

This is probably what you thought when daughter 1 and daughter 2 came into this world: I won't let you down..

Raising children is never easy. Raising daughters is a true challenge. I assume these two girls are the most precious gift on the planet to you. We never expected to have children that early in our relationship, but they are a true gift. They chose to come live with us and we never regretted that. It's a blessing to parent these two.

Today is Father's Day. A day to celebrate and honor the father of my daughters. You will be pampered and surprised and you won't have to work at all. We'll make you breakfast and feed you dinner and in the afternoon, we will celebrate your own father and have cake.

Happy Father's Day! The girls are lucky to have you as their daddy. You are the best dad they could ever wish for.

Pleased to meet you

Do you remember the application our daughter did to go study abroad? The Comenius Program? How in the end she was not allowed to go? Well... she's still not going, but we have good news that will somehow compensate for the grief. The people from the program have asked us if we were willing to host one of the students, coming from Italy. At first, we were a bit shocked, but then we realized this student needed a host family, if she wanted to spend some time in our country. If no family was to be found, another dream would be shattered. We couldn't let that happen, could we?

So yes, she's coming to stay with us. The girl with the special name: Ilaria Landriscina, is going to join our family this fall. We don't have an exact date yet, but we have a picture and that makes it more real. We are looking forward to having her here. It will be a one of a kind experience. We need to get her room painted and make it clutter free, so she will have a pleasant stay. I have no idea how we will communicate, since she doesn't speak Dutch and our knowledge of Italian isn't much better, but I'm sure we'll find a way..

You don't give up on the people you love

When this couple - they were celebrating their 65th (!) anniversary - was asked, what they had done to grow old together and still be in love?

It didn't take them long to answer that question. Practical simultaneously, they said: at least a cuddle a day, that's all it takes..

It's moving to look at the picture and see the love in the eyes of these two. The way he holds her hand and presses his lips against her fingers.. The pride in her eyes when she's looking at her husband.
I wonder what their story is. When they met. How old they were at the time. Whether they have raised children of their own. Were they fortunate in their life or did they suffer great losses? I'm curious to read more about this couple.
It's heartwarming to see that this way of life is paying off. It's obvious they are still in love.
I imagine them sitting on the couch, their fingers entwined. I can see her, pushing up her body with her fists pressed in the couch, to slowly shamble towards the kitchen. She asks him, in a soft voice, if he would like a cup of tea. His "yes love" was not even necessary, since she knew in advance what the answer would be. How she drops half a lump of sugar in his cup, pours the tea over it and stirs it with that small silver spoon she tends to polish on Thursdays. He hears the sound of the cookie tin and the grin on his face explains it all. He knows she has been baking his favorite thumbprint cookies that same morning and he knows she won't have any. He is the only reason she keeps baking. Her sparkling eyes glow even more when she sees how he carefully brings a cookie to his mouth. With her index finger, she wipes away a small crumble in the corner of his mouth. His mouth drops open and his eyes close. She puts away his cup of tea and covers his knees with a blanket she knitted a long time ago. Her head rests on his shoulder and a smile is to be seen on her face when she closes her eyes. The dishes can wait. This moment is golden. It's what keeps them together..

It's not that easy

The last time I had seen my godmother and her family, was on my Confirmation in 6th grade. She came to church, to support me, but she didn't stay for the party that was planned. I never thought it would take 7 years before I would see her again.

I have two nieces. They are both older than me and very different. One was blond and had tons of pretty freckles. The older niece had curly black hair, all the way down to her bottom. I loved to go over to their place for sleep overs during the holidays. They lived in the area of Ghent at the time and I was invited to stay with them for a week or so. We were young back then. Younger than 12 for sure. One of the nieces had an orange record player. It was the most beautiful record player I had ever seen. It had rounded corners. It wasn't big and the sound was probably not the best, but we could play records in her room. One of the records we would play over and over again, is a record not many of you will recognize. It was called: Kiss me mio, amore by The Loveletts. I'm pretty sure the record belonged to her parents. The music is not exactly fitted for young children. But we loved it. We would sing along: oh baby oh baby, oh baby my little baby. If the record player would have had a repeat button, we would have used it. It was quite tricky to put the fragile needle on the record without scratching it. We were afraid to damage the record, so we were very careful with it. I never forgot that song, nor the moment.

At the age of 18, I got my driver's license. I had longed for this piece of paper for a long time. Being able to drive, would give me so much freedom. It didn't take me long to buy a second hand car and soon after that, I would drive myself to school. No more boring train rides for me!
On my way to college, I passed a familiar area. I recognized some street names. Only a few weeks later, I realized this had to be the area where my godmother lived. I was totally excited! My heart pounded in my throat when I took the exit and started to look for the house I was familiar with. I even remembered the address by heart. But what if they had moved? They had moved before you know, since my uncle worked as a police officer and he was asked to move several times. But I decided to give it a try. I got out of my car and walked my way up to the door. Then I chickened out and ran back to the car. I had to calm myself down. What could happen? Not much, right? So I pulled myself together and rang the bell. My godmother opened the front door and showed no sign of recognition. I told her who I was and she was moved to say the least. She was just on her way out to see her doctor, so she hugged me and asked me to please come back some other day. And that's exactly what I did..

An experience

I know not everybody is fond of dogs. It's not fair though to say you're not a dog lover, if you have never owned one. There are dogs and there are dogs. And then there are whippets.. Yes, here I go again. This breed is so different, so.. well... I don't really know how to express it. Most people who are not fond of dogs, have no issues with whippets. As a child, we owned a whippet girl. Her name was Kelly. She was brindle, just like our Inthe. Her sister, Lady, lived with my cousin in Brussels. She was more like Rebba, a bit darker maybe. So I was used to the breed. I knew what whippets were like.
It took us some years to get our own set of whippies, but we don't regret having welcomed them into our home.
Having a whippet in the house, is a reassurance that you will always have someone wagging its tail for you. Someone who will be full of joy when you enter the room - even if you have left it for only 5 minutes - and who will love you for no reason. A companion who will fight for the nearest spot next to you on the couch. A warm head in your lap and two legs on your shoulders, in a clumsy attempt to give you an enormous hug. The look in their eyes, when they are sitting like sphinxes, waiting for a crumble of that cookie you're having. Their body close to your leg, when you get up to stroll to the kitchen. You always have a shadow following you..
Our daughters were not looking forward to having a dog. They don't like how they want to go in and out the house multiple times a day. They don't like the smelly part, when they have eaten something beyond their diet. They still believe whippets are ugly. But I can tell they love them. They cuddle them when they come home from school. They kiss them goodnight and they let them sleep under their blanket on the couch, stroking their head. So I do believe that they have changed their minds about whippets. I do hear them say they will NEVER EVER have a dog when they have a place of their own. That sounds so familiar.. I felt the exact same way when I was their age..

The sign is wrong. It should say: All you need is Love.. and a whippet. Sorry guys. But whippets rule.

Till death do us part

He's a very successful, handsome young businessman. His life is exciting and he has managed to live his dreams. Madly in love with Carmen, they get married and they get along real well. Little Luna is their little princess and they love her to pieces. Every now and then, he meets other women and needs their love and approval to feel better about himself. Carmen knows about the cheating, but she forgives him for his enthusiasm and his boyish personality. 
Fate strikes. Carmen gets diagnosed with breast cancer. Although Stijn is very supportive of her, he has a tough time dealing with this struggle in their life. Roos is the woman he confides in. She comforts him and offers him a refuge, away from the cancer and away from his tormented family. He needs this escape from reality despite his deep love for Carmen. 
Carmen faces a breast amputation and her world falls apart. Stijn breaks up with Roos, to spend more time with Carmen. She won't live much longer and they agree to quit jobs and enjoy each other for the little time they have left. Carmen forgives him for the numerous affairs and he strokes her back when the chemotherapy makes her vomit at night. 
She's ready to leave for the other side and asks her husband to call a doctor. Euthanasia is her last wish.. 

This (Dutch) movie gave me the chills. The moment when Carmen had to say goodbye to their 5 year old princess, was devastating. I let my tears run wild. My blood sugars were totally messed up. I think I'll watch it again. "Komt een vrouw bij de dokter... "

Do you remember?

I was 12 years old. Ready to change schools and enter a new world...

My godfather was French by origin. For most of his life, he had lived in Belgium. He never wanted to learn Dutch. There were some words he could pronounce and he understood most of what we said, but he kept talking French to me. I had just started to learn French and it was not of that level that I could have a conversation with him. So we didn't relate real well. He lived nearby and his wife and I got along well. She translated for me and she encouraged me to speak French. I never succeeded in having a good conversation with my godfather, but every now and then we got together.

He gave me a wonderful present. It was a beautiful doll. She was huge! She had pearly white hair with tons of ringlets in it. She wore a lovely dress and her feet were wrapped in shiny black shoes. She had ribbons in her hair. The doll was really special. You could undress her to find this little hatch in her backside. It could contain a teeny record. The doll came with 3 records, full of French music. One of the songs was Trois Mousquetaires. I would sing along and play the record over and over again, until I knew the song by heart. I can't remember the words. Not even the tune. But I do remember how special that present was. I don't know what happened to the doll. I guess I got too big for it and I'm sure it found a new place to live in the attic somewhere.

My godfather passed away a couple of years ago. My cousin let me know but I couldn't find a way to go see him before he died. I regret that. I wanted to have the chance to talk to him in French. Maybe not a whole conversation, but I could have tried to let him know what he meant to me. Every now and then, he's on my mind. Like today, when our oldest daughter told me the story of the Three Musketeers..

I kid you not

When I look into it, it happens more often than it used to. Thought transfer I mean, or telepathy. You know.. thinking of that one particular friend, all of a sudden your phone rings or the inbox of your mail account presents you a note from that same friend. Coincidence? Telepathy? I don't know what it is, but as I said: it happens more often. Are we connected somehow, that our thoughts reach each other on a different level? It keeps me busy. I may be texting someone, when at the same time a similar message comes into my inbox. So strange! Sometimes even spooky. How does the other know what you are thinking? How does the other know you're texting too? I guess we'll never know the answer to that question but I like the thought of telepathy. It means other people are thinking of you too..

I've been hiding from you

Photo Lana Joos

We had no idea your mom and dad were planning to move in here. Didn't we pay enough attention or were we too blind to see? You were definitely very quiet. It was not until Hubby tried to clean up the bush of bamboo, that he noticed the surprise deep inside. There was a nest of three baby birds. Probably just hatched, since one little green egg was still waiting to be hatched. Mom and dad were not to be seen. We looked out for them, but they were completely out of sight. Two little babies opened their little beaks in silence. The third one was asleep and seemed smaller than its siblings. I wonder if the fourth egg has life in it. We can't tell. It's probably not a good idea to go peek five times a day. If we do, the bird parents will not come back to take care of their offspring. The sight of the little chicks moved me. In a second, my blood sugar dropped to a low 45. The stool I was standing on, made me sea sick. I had to step down, holding on to my camera. But I was glad I got to see this new life in our backyard. I'm glad mom and dad Birdy chose this place to raise their chicks. Looking forward to seeing them grow up..

Genuine love

Just look at them... they are too sweet. They are so attached to one another, that each one of them would be devastated if anything would happen to the other. They are always together. You can't see one without the other. Sometimes, they are like Siamese twins. Walking them, they walk side by side, like they are taped together. Rebba is very protective of Inthe. She probably sees her as her baby. She's a very good mommy to Inthe and Inthe does listen to her. At times, Rebba has to reprimand her if she goes out of line and that's when us people need to step back and let them work out their issues.

It's easy to recognize genuine love once you have lived it. It's so pure, so unique. And that's what these two share. A unique love for the other. They couldn't live without each other and I'm sure if one passes away, the other will grieve for a very long time. Let's not go there. Let's just enjoy the moments we are sharing and love them the way they love each other...

Photo Lana Joos