What is Feels like to Accept What Is

Yes tonight is our last night. I had high hopes of posting a blog that was in my head with beautiful pics and memories and once again technology has aggravated and failed me.

If there is one thing I have learnt on this holiday is that I relax a lot more without a watch, a clock, a phone or a computer. Each time I attempt to use technology it ends up aggravating me. Tonight I called home and could not even hear the kids on facetime…my hubby and the kids all looked high on cocaine as far as I could see-not a great sign….:)

It has been so blissful. I have healed a lot. I have gained new perspective. I have come a long way. I think less and I feel more. I am still a bit in shock but I am more accepting. I am ready to live my life again.

A few lessons I have learnt this week:

Is it a tragedy or an inconvenience?

Think thoughts in your mind that you would not mind others hearing out loud

 

I am a Mom who my kids might think I am super busy doing things…but I am super busy feeling things (mainly about them)

I find when I compare myself to Soul keeper ….I fall short. I have rarely felt this inferior to anyone. It’s a weird feeling for a girl as high performing as myself. At least I am aware of it and can express it.

I have realized that the last few months have profoundly scared me. No longer do I trust that everything will be ok anymore. A heart attack..disease…bad stuff…is right around the corner. It has changed me to the core

I am a really fast reader and witter

I realize I am really really lovable despite all my faults.

 

I am strong

I can relax

My love for my husband runs much deeper than a big kiss on the lips. This year has changed us to really really deep way- in a different way. 18 yrs of soulmates.

I adore her. I nurture her. I love her with every fibre of my being. She is my Girl

I am part of her top nine. Forever.

I am proud of myself for being here..getting here…knowing what I needed and making it happen.

I am authentic

I may never be who I want to be exactly-but I am close enough to soon call it quits. To be satisfied and joyful. To be Me. And be true to that.

(I accept). I think. And if I don’t…I am on my way there. Even without a little necklace at the neckline

Goodbye Dominican Republic. You will stay in my heart forever.

All the Moments (so far as still have 3 days!!!)

 

 

Best Moments

 

1-(by far)- Soulkeeper getting on the plane!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

2-The hotel sooooo much more luxurious and amazing than my expectations. Far far surpasses what I was thinking

3-the Jacuzzi on our balcony fits two (in bathing suits of course!)

4-the food is totally delicious and neither of us (since her airplane ride) has had even a minor tummy ache

5-The weather has been literally perfect

6-I have slept so perfectly (minus one night that the air conditioner went crazy for a few hours and made loud banging noises)

7-I ventured out and got a little news from home yesterday and my daughter seems to be adjusting well to her brace

8-Soulkeeper crying at airport for leaving her little kids for first time and 2 days after saying best week of her life and that she would easily stay 10 days if we couldJ)) I knew she would love this!!!

9-Our rose petal bath that our butler prepared on the balcony for us. I guess he thought we were lesbians!!! We went in it anyways of course and thought it has a lot less pressure than taking a bath with our husbandsJ

10-The spa!! Totally amazing like paradise….

 

 

Funniest moments (so far)

 

1-Soulkeeper giving our money and gifts to the wrong vendor!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

2-Every black guy on the island telling Soulkeeper she has the most beautiful lips

 

3-Every black guy on the island telling her he wants a picture with her

 

4(the black guys saying I look like Jennifer Aniston!) Yahoo!

5-We pretending we have any interest in the disco that starts at midnight just to pretend we are totally young

6- Us getting lost here every which way we turn continuously

7-Me telling Efrain our butler NEVER to call and wake us up again. EVER!

8-when Soulkeeper “was a real heel” and asked her Hubby on Facetime how Beauty was (he and my hubby had lunch that day). And I cried bc I didn’t want any news from home as was too scared. When her Hubby said “was a bit of drama with Beauty” I cried and cried and cried and Soulkeeper went out and called my Hubby to make sure all was ok and report back to me.

 

9- We both joke often that if my Mom was here we would have a serious sleeping dilemma as beds are way  too small for two people! And she sleeps totally naked every night. I don’t want to have to spoon my naked friend !!! Ewwww!!!

10-The flipping phone is bathroom that falls off hook every time we pee. And the clock that has no concept of keeping time.

 

11-No clock in room.  Iphones locked away in vault and no watch certainly make for a very free trip with no schedule!!

 

 

What we miss from home

 

1-My MommyL(( She should have been here with us as planned. SO many moments we go through the day and say..if she was here then….or she would have loved this…We both wish she were here with usL((((

 

2-We miss our kids and families. We are although both so happy however to have their Daddy’s take care of them. So good for us and so good for them.

 

3-Absolutely nothing else

 

Ways we are soooo similar when travelling

 

1-Total same rhythm for sleep, rest, sun, shade, food and fun

2- We both love sleeping in on vacation and not having to wake up at any time in particular. Most days have been 10 am surprisingly!

3-We both despise the use of IPhone on vacaction and can’t even stand to pick ours up to take picture even! (We enjoyed a really nice night though last night of room service and computers and iPhone all evening and that was great but we are happy to get back to being in the present)

4-We both love wearing no makeup and having greasy hair

5-We both only take about 7 minutes total to get ready for dinner

6-we both like shade way better than sun except for when in water

7-We both never run out of things to say to each other (on vacation or anywhere else for that matter) and we both always tell the truth

 

 

Ways we are sooo different on vacation

1-She loves talking to all strangers and locals on the trip and I am thrilled not to utter a word unless really in the mood and I really, really  like the person

 

2-Soulkeeper loves hearing about other people’s kids and I am very happy to not talk about their kids all week! (only hers and mine all day long)

3-Soulkeeper likes going to the going to the gym. I don’t on vacation. Even at home…do it but can’t say I like it. She adores it.

4-I read every single moment I can steal. I read and read and read. Soulkeeper likes reading but doesn’t read much on vacation

5-She went on an excursion at 8am today for the whole day on and non-air-conditioned jeep in the jungles and mountains to see the locals and the schools and the caves and see the locals dance and sing. I am going at 11:30am on a Dr Fish Spa Boat where you get 7 spa treatments and fish in the ocean eat the skin off your feet to make them soft.

 

6-She will speak to everybody on her excursion today. My plan is to speak to nobody. Bliss for us both.

 

7-She has all natural organic products. I have whatever I can find and works most efficiently and quickly

 

8-She forgets her beach bag, purse, waterproof sunscreen and t-shirt in Canada and I even have a sewing kit packed just in case (which we used BTW!) and have two beach bags in case she forgot hers (she did)

 

9-Her vacation vibe is friendly, interested and keen. Mine is please leave me alone so I can read as much as possible (except for talking to her and a little our butler)

 

PS:In Europe I am totally different and love the exploration and locals and culture and people. Not at the beach-I hibernate completely.

 

Things to still look forward to:

 

1-Our individual  excursions today

2-Casino tonight and my lucky streak

3-Our photo shoot at 10am on the beach. First hair and makeup of the week

4-Our second bargained spa bali bed and hydro circuit relaxation that we bargained for Sunday night for free

5-Everything in between all of that

 

Things we will never forget from this vacation

1-the precious time we had the strength to carve out for ourselves

2-The way that I think she has cured me (I think-no promises). I think I will go back in a different state and mindset. Hopefully forever?

3-The way she has led me back to my beautiful daughter

4-The way we have both come to realize that we are way better mommies when we forget our kids sometimes completely.It is a must.

5-the way we know technology is both a blessing and a curse and have decide to control the curse part more effectively

6-The way we know for sure that we could never live without each other..or never tell the complete truth to eachother..or never lie to eachother..or never hold something back from eachother. This is real all the way and always will be. Soft love..tough love..real love. This girl above all has reserved most of her kind spirit for….me..even more than the locals. I will love her endlessly for this perfect gift

7-The way that both of us can be exactly who we are and still be unconditionally loved by eachother

8-The way that we made time for this important trip and milestone in our lives despite every single factor and obstacle in the world almost preventing us to come here

9-the way she got on the plane eventhough it was almost impossible to do so while barging and green. She did it for me. She did it for her.

 

We are both smart enough to know….we need this week.

 

Onto the last three days!!!!! No don’t end!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

 

=The Cherry on the Cake

 

Right now I am on Bavero Beach in Dominican Republic with one of my dearest BFF’s: SoulKeeper. We are at an AMAZING hotel and having and AMAZING time.

  I have honestly never felt like I both needed to deserved a vacation more than this week.

But the sad thing is we almost did not come here.

Sunday night I am happily packing (ok ok maybe not happily if you know how I feel about packing!) and I go to sleep..Soulkeeper and I text promising to see here at my place at 6:45 am where my Protector would drive us to the airport.

I sleep soundly dreaming of the week ahead. My true salvation.

And then the phone rings at 5:50am. And I am still, asleep. And as I answer it and wake up on the phone I realize I severely want to hang up on the nasty human on the other end telling me unbelievable and horrible things.

It is Soul keeper’s husband (another one of my closest BFF’s) telling me 45 mins before we are to depart to the airport that my BFF (his wife) has GASTRO!!!! And has been throwing up all night and is currently hugging the toilet.

And as much as I want to be reasonable and kind and considerate and understanding all I can possibly think of to say is “WHAT THE FUCK ARE YOU SAYING!!!!!” DON’T TELL ME THIS..DONT TELL ME THIS..SHE IS COMING ON THE TRIP..DONT TELL ME THIS ..SO DONT TELL ME THIS . NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

An then I add “What did you want me to do –she has to be here is 45 mins to get our plane??? And he says” she thought you might be able to provide some guidance as so what she should do and what is the best thing”.

And in my head I am screaming: I WILL TELL YOU WHAT TO DO-PACK A CHANGE OF CLOTHERS IN HER BAG-MAKE SURE SHE HAS SOME EXTRA UNDERWAER AND A PASSPORT-PROVIDE A BUNCH OF BARF PACKS AND BLOODY DRUG HER WITH GRAVOL AND SEND HER TO ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

(and ps I think I said all this out loud to him too) Thank god he loves me:)

 

Then he told me they would make the decision and call me back in 5 mins.

And then I started crying and screaming and wailing from the bottom of my heart. My kids were all asleep and my husband was on the toilet and I begged him to get off and come and absorb this shock with me. And he did. And I cried and cried and cried and cried and cried.

And then decided that if she was not going them I would go alone. I would get ready in 35 mins and go to Dominican Republic alone. A trip I had planned for two years for my mom and BFF and paid for almost all of it out of my Dad’s inheritance. And now my Mom had cancelled and my BFF was pucking her brains out. I would be in DR alone and by tomorrow she would feel like a peach. OMFG!!!!

 

So he called back and I was silent. I was too scared to speak. Too scared to hear. He later told me I was crying and Soulkeeper was crying. Two crying woman at 6:01am. And he told me that she was getting on the plane and that there was no way she could drive to our house as planned. And no way could he drive her as she has three young kids stull sleeping. So I pulled my husband off the toilet (once again) and told him to get out of the house and go pick up miss barfly. And he did. Without  coffee.

And when she arrived at our place she was A COMPLETE MESS. No speaking …any energy…no nothing. I was shaking and popped some major anti-anxiety meds reserved for such occasions and took her to Dominican Republic with me. Where she belonged. With me. Saving me Laughing with me. Being with me.

And so lots happened between that airport and here (mainly a lot of sleeping and green face) and now we are here.

And it is paradise here truly……we are having so much fun. We are both anti iPhone on vacation. And anti clocks.We both sleep in until 10 am for two mornings now….we never run out of things to say and we are on the exactly same schedule and rhythm. We soak in the shade (vs the sun) we eat all the same things…I watch her “attempt” to drink…she is kind and then she is the devil..she makes me laight ..she made me cry (and then she fixed it!!) She lights up my life like no star in the sky ever could.

And I miss my Mommy so much who could not come. I look at this place in paradise and know we have to come back together one day. But I know her decisions were for the best. It’s way too hot here for her if she is not well. I can barely walk from one end of this MASSIVE hotel to another without passing out!!!!

 

Soulkeeper and I have decided that a girls trip like this is a necessity for womankind. Sure for her leaving three young kids was heartbreaking but she got over it mighty quickly. as it is a totally worth it sacrifice!!!! She will be a hundred times the mommy she needs to be when she gets home-batteries recharged-new perspectives, realized, revitalized. This need to be prescribed to any Mom. Mandatory!!!

The cherry on top is that despite all the bad things that have happened to me and my family over the last 4 months-this one..that almost turned out bad….is really, really really, really good. It’s truly exactly what need this week to recharge my batteries and clear my head. And hey it totally helps to have a full time social worker, art therapist, private counsellor taking on my case! For free and with love! Watch out world when I return…I will be ready to take you all on.

If anyone in this world is reeling really really blue…go away to a beautiful place with Soulkeeper for a week. She will truly make it all better (if she is not late or cancel that is!) If she gets there…she is yours forever. She will get me PEACE back. Yay.

Thank you world for letting one good thing happen to me lately.

The Present Moment is All we Have

 

This weekend my husband and I are trying to practice Mindfulness Thinking. It’s not really that we want to as much as we need to do this. It feels like we have been given no choice but to live fully in the present. If this is a lesson that we both need to learn..I would prefer Universe that it not has to be taught at the mercy of my daughter?

We had to get away for a night. Desperate. Depressed. Urgent escape needed. Too much. Too soon. All at once. A feeling of despair and hopelessness. The brace is so much..I can’t even describe it. And the fact that she could wear this for three years 20 hrs a day and still need spinal surgery is just horrible….it feels hopeless to me right now although I know that is not the case. And the worry. Worry worry that our lives have become….every 6 months the X-ray telling us if progressive or not. The worry from this point on end that will never go away. Ever.

 

Both my husband and my daughter are struggling with different things being taken away from them in their lives. Things that were familiar..and seemed essential and that they counted on. Things they will both never have again.

I also feel that the peace I worked so hard to have in my life has been ripped off of my back. And I don’t know how to get it back. I feel like I have lost something too…something really big.

And I am angry once again. It seemed that the diagnosis made me go through all the grieving stages. Now with the brace on I am going in for a second round. ANGER.RAGE. Rage and anger. Asking “Why my daughter??” Why not someone else? Anger at the people in the shopping centers looking hurried and mad and stressed when really…their lives aren’t even stressful very likely at all. Do they have a child at home who has to wear a brace and may have to have spinal surgery one day even though her life is dancing and sports? I bet not. Irrational anger and fear and rage. I want it so desperately to leave my body.

So the only thing to do is be mindful. To the point that my husband and I just signed up for an 8 week program for Wednesday nights for two hours and a whole day weekend retreat that will teach us how to do just this. It was created at McGill University and now very very well known around the globe. It is expensive and proven and I have been told should be mandatory for people in chronic stress and/or chronic pain. It is designed specifically for this population which we are now part of. We need this course fast. April 23 is not fast enough. Wednesday is a precious night at our house..we all cook and have family night and be together-one of the couple of times a week. We are willing to give that up for 8 weeks-that is how bad we feel. We need help. Thank god we are smart enough to know how to help ourselves.

And the basis of this course which we are already trying to practice this weekend is the beauty of the present moment. Having just that and only that. The present moment being enough. We all spend half out time in the past and half in the future. The worry, the regret, the stress, the anticipation, the revenge, the sadness. But what about the moment we are in? Where is there time for that?

So today we went for a long walk at the cottage just the two of us. We enjoyed the breeze on our faces. We ate the best sandwiches ever with chicken salad and cranberry and had Italian good luck soups with lemonade. We browsed leisurely at the pharmacy and bought a got well card for a friend.

And my husband looked at me and said over our sandwiches” What about now-this moment? Isn’t it all we need?”

And I said "yes..yes it is"

It felt like this afternoon has been the first time since January 13 that there has been even one single moment that worry was not an absolute necessity. One of the very first moments that if I chose too-I could breathe.

And last night we were so tired we literally fell onto the couch and slept for hours and hours and hours in front of the fire with daylight pouring in the morning. We slept until 10:30am-on a small couch in daylight. And it was heavenly. That moment and that sleep was perfect.

We have to learn how to live a different way now. We have not been given the choice. We have too. So does our daughter.

And it will be a long road to get there….but gadammit I will make this beautiful for my family (excuse the language but frankly I don’t care at this point). Somehow I have to get my mind to a place at some point to make the lemonade from lemons I know I need to make.

And when I do?

It’s going to taste delicious. Friggin delicious let me tell you.

But getting there??? It’s damn heart breaking. And I just need to tell you that.

 

Here I Am

 picture to follow technical difficulties

 

(Told in the voice of her Mommy…)

 

Beauty in her new Spincecor Brace that took all afternoon to fit and get right over many hours this afternoon. It’s been a long day and a long evening.

 

I wanted to write our story on this as we have all been so out of sorts many of you have only got bits and pieces. We have been absent, and hurting, and busy and in our own bubbles. Here is the story.

2.5 weeks ago Beauty was diagnosed with moderate scoliosis (not the mild kind that 6 percent of the population has that causes no issues and warrants no treatment) It was sudden and unexpected. A suspicion from the doctor of “there might be a very mild scoliosis here so let’s get an X-ray just in case to keep an eye on it” ..quickly turned into “this is a 30-35 degree curve that needs to be treated with a brace ASAP”

She has gone to Ste-Justine Orthapedic surgery unit and Spincor Spinal specialist’s clinic. She will also have a consultation at  the Shriners at the end of March. She has adolescent idiopathic scoliosis with a substantial curvature of the spine. A right thoracic single curve with a milder compensatory lumbar curve. Her apex is at T8 which is higher in the spine. Overnight we have become specialists in all of this.

We don’t know if the curve will progress or not..it is wait and see . The goal of bracing is to halt the progression of the curve to hopefully avoid spinal fusion surgery when she has stopped growing. She will wear the brace until skeletal maturity (riser 4) . She is now riser 0 and right before her peak velocity growth. That is why imperative to get this brace on ASAP.

After two weeks of consultation and scientific research, we have decided to go for the very innovative Spincocor athletic brace made for athletes and dancers and gymnasts. It works in a completely different way than the traditional Boston rigid brace that she was also prescribed and fitted for. It moves with you and puts you in the corrective spine movement as you move and forces your body to relearn neurologically and physically the new corrective movement.  The brace was invented by two former orthopedic surgeons at Ste Justine hospital and now is used by chiropractors and surgeons across the world. She will wear this 20 hrs. per day for the next 2.5-3 yrs until growth is complete. We choose this one as it will move with her. As a highly athletic girl and dancing and moving being her whole life-this brace was the obvious and innovative choice.

www.posturtek.com if you want to check it out.

I had this dream of writing you all tonight and having a picture of Beauty dancing in the brace smiling. That was what was in my mind…but of course reality of tonight is tougher. Lots of tears…scrambling to find an outfit that fits over the brace for tomorrow…lots of brace rubbing against the skin…lots of worrying, figuring out how to get the brace on and off, figuring out how to sleep with it on. Tonight is a tough night.

 

The next few weeks especially will be a big adjustment for her. The corrective position the doctor has put Beauty in .. is no walk in the park..at all. It will take some serious getting used to and all her movements now although possible and doable are limited by elastic band resistance. So she is working 25 times harder than you or I to do her normal movements-move in a mobile way, rotate her shoulder or rotate her spine. She will get used to this-both her body and her mind but there will be adjustment of course.  Also an adjustment to clothes and fashion. She will have a lot on her plate for a girl in grade six who before this day never gave thought to physical limitations and barriers or what clothes to wear in the morning.

 

And as many of you very close to us know-this has not been an easy time for our family in general for the last 5 monthsL It has been one blow and crisis after another for months now. I have no doubt that we will make this all beautiful somehow…but I guess for now we are just letting ourselves feel it.

All that to say we will all get through this-and Beauty will too of course. We are all handed challenges as a family in our lifetimes and many of them we cannot expect or anticipate. This one will be ours. And we will all use it to grow and change and evolve love. You can be sure that somewhere and somehow all of this will end up making sense..

And Beauty? Oh my gosh I know she will too. We have been witness to the confidence and strength and beauty our daughter has so many times over these last two weeks. The belief she has in her body and in the works. The grace and kindness, the leadership and strength….the sheer beauty of her spirit. The confidence she has in herself to say “Here I am world-this is me”

She is already planning her little get together we will host for her friends at school to show off this new brace and how it works. And she is coming to Novartis o do a lunch a learn and show us a thing or two about scoliosis. She will do a dance without the brace and then in it-to show both the power and foccr of both her brace and her own body srepitate the obstacles it has been given. We are so proud of our daughter. Of who she was before all this-how she is handling it all now (both the sadness part and expressing it and the strength part-)and who she will become because of this experience.

 

Thank you for all of your emails and texts and support and love-especially today. Thank you for understanding and supporting us through these tough times. We know we have not been ourselves…and we know that must be hard on so many of you. So many have asked what you can do to help her ? If you have a flair for fashion offer up your help to go shopping with us? Include her in things and give her things to look forward to? Understand and be patient with is all?

 

With love and thankfulness

 

 

 

 

Homade "Tire" and French Onion Soup

 

My Protectors' culinary abilities know no limits. It’s a fact. No matter what…he cooks..and cooks and cooks. Everytime different things to. I do nothing around food-as in zero- unless he is not home or I am forced too because it is his birthday or something.

And even then he  usually ends up cooking.

And around here at the cottage he makes it an experience. It lasts for 2 hrs-tvs are turned off-so are computers and phones usually. Music is put on and kids help him cook. Usually one at a time –sometimes two and sometimes three. And I get these precious times for me to read and write alone. We are all happy. And then I clean up with one of the kids. It’s our routine.

And it’s funny because it’s more for our family. When we have guests we go the simpler easier route and do a big chili or a big and simple pot of stew to spend time with the guests.... He likes cooking slowly with the kids….when guests he does it simple and quick and easy. It’s for his family that he indulges us all weekly.

 

Since end of January he has added two new things to his cooking routine: homade deserts each time and cooking on Wednesday nights. Also coming home for Monday dinners and then going back to the office until 10:30pm (that one I cook or rather heat up the leftovers he made on the weekend

 

So this weekend for lunch he mad homemade French onion soups. Sooooo yummy. And when the kids came home from skiing they all at around the counter and he presented them all with a hot and steamy bowl. And then he said “let’s make homemade tire” so they did and boiled maple syrup on the stove and rolled it in the snow and it was also super yummy.

I am just s happy for our kids that they have this great Dad. They are so loved and taken care of. He nurtures them so much. I do too but in such different ways…..and certainly they gain nothing form my culinary abilities (or lack of them)

I am good at lunches though I have to admit. I have a variety of sandwiches and salads that are all different and delicious. And I put a mean skiing lunch together. I am so organized so think of everything to packing mayo to parsley sauce for the sandwiches. Everyone always has a little treat and two different drinks. I am good at that at least.  And I am the one who does all the food organizing and shopping too. Now that my Mom has been unwell we have not have her doing this kind of help for about 5 weeks now and I am proud of myself for holding my ground. I am keeping afloat domestically although it is a stretch.

 

But I love seeing my kids cook with their Daddy. It really pleases my heart. There are so many things we are not great at as parents…..my friend the other day said “why don’t you like taking the kids to hockey???I truly don’t’ get it???” …we are lazy. Self centered a lot of the time….preoccupied…irritated….but there are also so many things we really do well.

And my husband’s is definitely cozy cooking. I don’t think he understands the impact this will have on their lives in the long terms. It’s a gift.

 

And I don’t think he understands either that if I weren’t married to him I would be so skinny! There would be no temptation…I am not a huge foodie but if it is around I will surely eat it with pleasure. He is the type of guy that if I am watching my weight finds me a massive bore….”a salad..that is sooo boring” So I find the balance of eating and looking decent. Hope it can stay that way!

 

Tonight is a good night. Mindfulness In the moment. We are here. We choose joy. Today.

 

And just in case you are interested in tonight's menu (they are cooking as I write this blog)

 

Bavette marinated steak on BBQ (he just shovelled it out of  the snow)

Parsley steak sauce

Patates a la persil

Pudding au chommeur

Asparagus

Portabello mushrooms

(and just for fun shortbread cookies for tomorrow lunch!)

 

The guy is amazing eh?

PSS-Can you tell we are French????

PSS:And After cooking dinner he helped Beauty with a project about penises and vaginas:) The man is a saint.

A Whole Other Layer Of Consciousness

 

I have been absent. Because I am learning a whole new life..That takes both lot of self-management and a lot of effort. And between  all that I am still working..and being a mom..being a wife...a friend...a daughter....sleeping..eating.

It is hard to explain this layer of your child having all the sudden a very long and hard health issue completely unexpected. You end up living in a very different layer of the world that those who don’t have it..don’t live in. and it won’t always stay like this-I won’t let it. But reality is that for now I am separate. We are separate.

And now after talking to many many people in similar situations and doing my research and reading…..I am not unique in feeling like this. People who have kids who have health issues live in a bubble of their own. It’s very different than many other types of hard times or crisis. It scores as number one of the stress scale out of 20 crisisis. GreatL

 

Like at work-literally anyone I tell Beauty’s story too stops whatever they are doing and helps me almost full time. Instantly. They all cry when I tell them. They are sending me scientific research at midnight on Saturdays. And they only do this for this type of issue. Only this.

Divorces have been announced almost weekly at work, parents being ill, even spouses being ill, loss of jobs, and loss of homes, robberies and fires. When you tell another human being your child is not well and it will be long term…it’s a whole other ballgame. The world stops..both for you and for those around you it seems. I never imagined this as I have never been put into this world before until now.

And who I have relied on through this has been different than my normal patterns. My people in this have been my work people. The scientists, medial advisors, the doctors, the pharmacists, the finance guys whose brains calculate the compliance rate vs the efficacy rate. And they have all held me and hugged me and taken care of me too. They have been my people these last two weeks and I could never ever have predicted this either. It’s funny what crisis brings-if you open your heart. I have depended on about six of my work relationships to a whole new level through this.

I am laser focused right now on making the right decision. And we have made it now and I feel like I can breathe a little better. I feel hope again.

I am still finding it a bit hard to live in the “real world” right now but a bit easier daily. And the world I have chosen to live in is work. Where the patient comes first. Where science is at its most innovative. Where I have people who are literally geniuses wanting to drop everything else and help me..for the patient..for science….for me..for her. Where this is a case to be solved. They don’t ask me about her before this-or think what it will be like afterwards. They don’t tell me about their kids-or their troubles. They don’t tell me about their work, their happiness, the problems, their lives, their vacations and their files. I don’t tell them about mine.

We focus on the patient. Because that is what we all do. That is why  we all come to work every day. For the patient and nothing else matters.

My heart is full of love and thankfulness for the people I work with right now who are deeply taking care of me and my girl. Our world has become a better place because of these three guys and these three girls. Who could ever know.