kiddos

kiddos

Tuesday, September 9, 2014

Oceans



I had an interesting experience Sunday. I visited a new church, not too different from my home church in its beginning phases. The church is located in a gym and full of young adults from the college. Walking in felt a little bit like going home except for the building was a sea of strangers instead of being a crowd of people I have known all my life. The anonymity is both difficult and comforting. The past few years have found me alone more times than I've ever experienced in my lifetime.

Home has become a more evolving concept for me as I age. No longer necessarily in the embrace of family and lifelong friends...although I often yearn for that kind of comfort.

The past few years have been a lesson in home being in your heart, and making the world around you home, no matter where you may be and how far from that you may feel.

New homes are harder. The people don't know you. Its not easy to find people who are willing to jump into an ocean of rocky waves with someone that they don't know and trust. It is much easier to "just be" when you know that the love of those around you never waivers. They love you even at your ugliest. They love you even at your weakest, even when you are frightened or scared or angry.

As you all know, anger has not been far from me in the past few years. I have held my shield high, angry at the world at times. Angry even at those I love. Angry because I am not home. Angry because I have faced a world of fears in a few short years and angry because its so hard not to have the fond embrace of home to envelop me when all I want to do is collapse in grief.

So much of the swim is done by wading and doggy paddling and just trying to keep your head above water with fear that if one more wave hits it will surely be the one that takes you to the bottom. Sometimes, you even feel as if people around you are willing you to drown, even tugging at your feet trying to pull you down. This adds to the frustrations and anger and grief.

The past few years have helped me find a faith and a strength I didn't know I possessed. I don't know yet the meaning of what I have been through or am continuing to go through. I know I am stronger but I do not feel strong. I still feel vulnerable. When people tell me how strong they think I am it is a reminder to me how close I am to drowning.

When I walked into this church, so familiar yet so new...a song was playing. It is called Oceans. I had never heard it and as I was watching the words of the song on the monitor and listening to the voices around me, all I could do was cry. The tears streamed down my face as I sat surrounded by strangers...I know God is the only force truly keeping me above the waves, and I felt like He was asking me to let go. I felt like He was asking me to hand over the pain and to quit fighting the waves and roll on my back and float for a while.

The hard part was that I felt myself fighting it. I hold the pain like armour. If I let it go, will I forget. I don't want to forget because it has become a part of me. Is it possible to surrender the pain and still have the knowledge? How can I stop trying to control it all? I might fail? How am I still in this place? Haven't I learned by now that I have no control of the outcome of things, and that sometimes, you just have to trust? That ultimately, it has nothing to do with me and what I do or don't do and that my plans and what I desperately seek are so small in this big big world.

Letting go is difficult. Just "being" is difficult. It should be the easiest thing to do, and it is definitely the most freeing. I know it will set me free. I know that without my clinched fists hanging on for dear life, that it will still be ok. There is beauty in the drifting.

I do know that it seems that no matter where I go, I am found. He finds me. No matter how small I feel, He sees me. No matter how far from home I am, I am Home.



Saturday, February 8, 2014

My Many Flipagram Videos

I made a flipagram video with the new flipagram app that I found quite fun and kept me busy during the long days in the hospital.
Enjoy.

This one is for Oliver (he's the oldest and way too many pics and I didn't time the music right, lol. Ill make it again one day I guess).



This one is for Eliot



This one for Emily



Our flipagram for Auguste and for hydrops awareness and hope



The video I made of me and the fam



and my personal favorite, the video I made Mickey the day of his surgery.



I am sure I will be making more of these. Stay tuned and hopefully I won't drive you crazy. lol.






Wednesday, February 5, 2014

Noah the Salty Dog- found tis in drafts...never published. rip Noahbear


Jasper's Noah Bear is my dog. That is his formal name....because his "dad" or "sire" was Jasper, his name was Noah and Bear...well, he used to be like a cuddly teddy bear and now he is a big ole polar bear.
Noah is also called the Salty dog...because once upon a time he spent many days in the ocean.


I got Noah as a college graduation gift from my parents. The Summer of 2000. He was 12 pounds when I brought him home. There were two yellow labs in his litter, and I just chose the one with the black nose. We have had some great times...me and that dog. They mostly involve the beach and road trips.
I remember a time when the two of us would take off for drives to the beach in my pickup. He would always sit right next to me. Even though there was an entire seat beside him, he would lean into me and drool on my steering wheel.

He has always been a funny dog. If I had a date, he knew to position himself right in between us. He actually WAS my first date with my husband. Our first date was to walk the dog to a nearby park. He witnessed our first kiss. I have memories of him as an excited puppy who ran into glass doors, as the dog who would swim out into the ocean in order to follow Daddy while windsurfing, so far out in the ocean that I had to start putting a life jacket on him because he didn't know when to stop. I can remember sitting on the docks with him to watch sunsets...he would bark at the birds, I would read a book. One time that crazy dog actually leaped off the dock to try to catch one of those birds....I had to help him navigate his way to the boat ramps in order to get our of the water.
He saved my life once. Maybe more.

He is nearly eleven years old now. He has aged a lot in the past two years...arthritic and fat.
He snores and farts and groans throughout the night. Sometimes I have to go help him up off the floor because he is in too much pain to move. If our walks are too far, he literally won't be able to walk for a few days until he recovers. He is an old man. 77 in dog years. (is that right? 7/1?)
I am not sure how many months or years we have left. Sometimes I get teary just thinking about the fact that we will have to say good-bye soon.
I was 23 when we became a family. I was just a girl. Fresh out of college. Ready to fall in love, save the world and learn all the secrets to life. He has truthfully been with me throughout all of my adult years. He is witness to all my rites of passage.
He has lived with me in 6 different homes, he has seen me graduate college 3 times. He has seen me date, marry, have children.

Once the top dog in my life...slowly replaced with husband and children.

He can no longer follow me from room to room as he did for nine years, but he is still acutely aware of where I am at all times. If I cry, he is there. if I am angry, he is there. If I am happy, he is there.
In the busyness of the daily grind, I have found myself unaware of his presence, or annoyed by it. Daddy said to me recently "Mama, Noah has been following you around for ten minutes and you have yet to say anything to him". Oh the guilt.
As I was watching him sleep earlier today, I decided to write this blog. I decided I would dig out some old photos of our earlier years and dedicate an entire blog to my best friend Noah.
This dog, a witness to my youth. A witness to my ups and downs, my best moments and my worst...Always happy to see me...Hopelessly devoted to me. The one being who has watched as I learned to experience this life.
He won't be around for another decade. In a short while he will pass on to doggy heaven and my kids will probably only know him because of the painting that hangs over the mantle (and at the title of this blog). But that doesn't change the fact that he has been an integral part of my life.
Thank you buddy. You are a good dog!

Update All Things Losinski

Hello friends. I know its been a bit since I blogged (I start so many of these things with that very sentence). What can I say? I am busy.

I would love to start by saying thank you to all of the people who have reached out to us recently, whether bringing food, prayer, friendship and support. The outpouring of love our direction has reminded us of how very blessed we are.

With so many things going on of late, I thought I would give a brief update on us all.

Mickey- Mickey has recently returned to work after having nearly half of his rectum removed. It was a huge surgery that took over four hours, a robot, several physicians, and 7 incisions to complete. He rocked it out, even getting up to walk that very evening. He was discharged much earlier than anticipated and has amazed us all with his recovery (the mind can be a powerful thing). He did have a brief set back that landed him a weekend in a local hospital, but he also recovered quickly from an infection we never identified.
 His final staging was T3N2M0. This means that his tumor was large enough to be considered a T3 (they range T1-T4). He had 5/16 nodes found to be positive for cancer, thus staging his an N2. And we have not found any distant metastasis, so therefore he is an M0. This is not the staging we hoped for. The numbers would say that with surgery alone he has a 50% chance of being alive in 5 years and with chemotherapy after surgery he has a 70% chance of being alive in 5 years. About 85% of recurrences happen within the first 3 years, thus meaning that after 3 years, the chance of it coming back drops down to 5% (which is much better news). The prognosis is much graver than we had hoped, but we all know that numbers are just numbers, and are believing for the best possible outcome. Our family has had the odds in our favor before, right?
Mickey goes back to surgery on Friday this week to have a port placement (a permanent access line placed in his chest), and will start chemo within the next two weeks. It is a 3 day chemo, so he will wear a pump (in a fanny pack) for 3 days every 2 weeks. We will do this every two weeks for 12 cycles (or 6 months). I know he will do awesome with this. We are considering a clinical trial, The research is changing standards of care and we are excited about being a part of that.
He plans to work as much as he can throughout all of this and I know he will do well. The chemo makes you extremely sensitive to cold (and we are living in Kansas, where we were given 11 inches of snow last night). Knowing this to be the case, he took his last opportunity to go sledding with Boy and Bluebird this afternoon.
I know the chemo will tire him, and am anticipating a tiring 6 months for us all. Right now it is still new, and I don't think either of goes even 5 minutes without thinking about the worst case scenario. Many tears have been shed, primarily because we love our children so much and don't want to even consider them losing a parent. I do believe that once we get through this initial grief, that life will start feeling normal again and we will likely only think these thoughts with every 3 month office visit that comes after chemo is complete.

Me- I am still working two jobs. I try to take call for the Greenville Cancer Center every weekend. It helps me not only stay involved with my patients and co-workers, but also provides extra income that we are much in need of.  The doctors there have been so helpful in asking about Mickey and helping me to identify clinical trials that he can be a part of, etc. I also joined the local hospital in October, and I am helping to develop a wound care program there. I have always enjoyed wound care and it is very satisfying. I have been fortunate to be a part of healing wounds that people have had for a very long time. I am learning so much and although many aspects of this job are new ventures for me, I know that I am developing valuable tools that will help me lifelong in my career.

Boy- Boy is in first grade and is doing wonderfully in school. He is starting to develop friendships with really sweet kids and it is fun to watch those develop. I am still friends with girls I met at his age, so this makes me smile.  He simply amazes me at how well he reads and does math. I think it is fun when my child starts coming home and teaching me new things. He absolutely fascinates us.

Bluebird- Bluebird is in K4 (she missed deadline for kindergarten by 10 days). She is at a school that is all inclusive and she has children with autism and down syndrome and other special needs in her classroom. I am so proud of her every day because she is so caring and kind to her peers. Her teachers always tell me how helpful she is.  She is so sensitive to the needs of others. I know this is a gift. AND She still has the best laugh in Kansas and all around.

Buttercup- ahh Buttercup. What can I say? She wears a bathing suit with boots and gloves no matter how cold it is. She likes to watch "Say Yes to the Dress" and she knows all the frozen songs by heart. She still hates the idea of giving up her binky and we usually find her up playing under her bed with a flashlight well after bedtime.

Auggie (I feel like I had a nickname for him, I even thought it started with a "B", but I must have forgotten it, ha). Auggie will be a year old next week. He started walking, but still crawls for the distances. He LOVES to eat. He eats all the time and I have not found anything he doesn't seem to enjoy eating. He is like a little bird, always opening up for more. He is huge and wears 2T clothing (weighs more than Emily) and barrels around the house getting into anything and everything. Like his brother, he loves the Wiggles. He has white hair that sticks straight up on top of his head. He smiles and laughs all the time. He is the coziest snuggler ever. 
We are seen tomorrow in Kansas City with genetics (we go to KC often to see vascular docs and pulmonary). We have been waiting for this appointment for many months now. I am unsure if they will be able to provide us with any insight to why he had hydrops or why he has a lymphatic malformation, but we still feel it is important to cover all of the bases so that as future research and information arises, we can continue to make sure he has the best care possible. We are told that lymphedema is "heavy" or "achy". He doesn't like us to squeeze that hand (when walking with him), but he certainly has not let it stop him. We know a past xray showed small pleural effusions (fluid on lungs) vs lung scarring. He has a cough at times but really, if you met him, you would be amazed he was ever so sick. He is such a healthy happy baby boy, and has the most kissable cheeks in the world. We are celebrating his birthday on Valentines day with lots of hearts and love!

Fozzie- This dog is taller and heavier than we ever imagined he would be. He is silly looking and acts even sillier. He loves the snow and dashes out to jump and roll in it. He comes inside with snow dreads and a smile. Yes, if dogs smile, this is a smile. He has a nose as long as a mule and a tongue that is twice as long. He thinks he weighs 10 lbs and sits in our lap, lays his head on a pillow and I've never known a dog until now who has to think about whether or not he is in the mood for steak.

With so many hospital days recently, I became obsessed with two iphone apps. Flipagram and waterlogue. I made a video for each kid, Auggie's is also a tribute to hyrops survival, a video about my parenthood, and one about Mickey (that I posted in a previous thread), I will try to post those soon but having "technical difficulties". I am also posting a few of our recent photos that I waterlogued. ha










Sunday, January 19, 2014

Balance

I've been thinking a lot lately about balance.

Balancing family and work and faith and media and finance and health and......

I recently purchased the new issue of Real Simple magazine and the entire issue was about balance. So many stories and tips and during this hospitalization I have delved into it getting ideas that are practical for my life.

However, the one editorial that has stuck with me most out of the entire issue said this (and I wish I could quote the entire thing but it isn't in front of me):
it said that the fact that we were looking for balance should be seen as a luxury in itself. It probably meant we were not working two or more jobs. It said that it was a class phenomenon that we thought we deserved to be happy, rather than just clothed and fed.

This  humbled me. She is exactly right. We are not promised that life would or even should be happy and easy and equal. In fact, if anything, we are promised the opposite. I am not saying that we should not strive for happy. I believe wholeheartedly that we should strive for balance and equality and overall happiness. Perhaps it would be easier to be satisfied with life if we all kept this in mind as we continue to search for balance in the chaotic reality in which we live.

The issue did what it set out to do....it helped me find a bit of perspective and a bit of balance. I am feeling more than just a little blessed this morning. In fact, there isn't balance or moderation in how blessed I feel....My cup runneth over.

I made this little video while Mickey slept and I was sleepless last night. Truly we have no balance when it comes to love...


Thursday, January 16, 2014

Have I Loved You Well?

I am sitting in the waiting room right now as my beloved lies open a table getting a pretty big surgery today. I have been anticipating this day since we learned of his cancer. I just wanted to get this thing out and get the final staging and make a plan for the future.

The surgery itself has never worried me. if anything,  I have been mostly consumed with what I cannot control, which is "what if it comes back in three years?"

I learned last weekend that Mickey's mind has been mostly concerned with this surgery. What if something happens on the table? Etc. These thoughts are not unwarranted fears as I have had a cousin and uncle who went in for very routine elective procedures and had significant complications that nearly took their lives. Mickey has been nervous about this surgery getting complicated.

Really, I should not be surprised by the differences in where our worries lay, because Mickey tends to stay in the here and now while my mind is usually looking way far ahead.

The past month has been stressful. This cancer diagnosis has come as a big blow to us. There are already so many unknowns regarding our future and it's hard for me to feel so much confusion about what is the right thing for our lives and where is the right place etc. It's hard being so far from family through cancer and hydrops. There are many days that I have felt very alone and have thought of all the what ifs and truly not known what is the best thing for us to do in all of those different circumstances.
When we discussed Mickey's fears,  I suddenly started thinking about those things too and I also temporarily got concerned about the surgery and something going wrong.

 I started feeling even more emotional and wondering about all the things I could have done differently. Had I loved him well enough? Did he feel a full life with me? Had he done all he wanted to do? Was he satisfied with life with me and the kids?
I didn't know the best way to talk about these things with him without coming across as negative, but Monday night I decided it was a conversation that we needed to have.
I asked him those very questions. I know that in our [almost] eight years of marriage! we have seen and done and gone through more than many people do in a lifetime.....and with that comes a great deal of stress. I got my masters degree, he got his PhD, we have lived in three states and had four children and battled prematurity with one child and hydrops with another. I have felt like maybe all of this was more than Mickey ever expected would come his way when choosing to marry me. What if he had regrets? What if he felt unloved by me? Had I loved him well?
Mickey's answers were that he thinks he has a super cool life with four beautiful kids and a smart wife and he feels he has truly lived and loved more than he ever had expectations for in life. This of course, is what I needed to hear. It gives me peace now, as I wait in the waiting room. I just know things will be ok.
It also reminded me that I need to start living my life with the focus of loving my family well. Being present. Being kind. Being gentle. Listening. Nurturing. Loving.
Can eBe present. Don't always live three years ahead of yourself...be present in today and make these moments count because the future is not guaranteed.
I write and tell you this today because not all are facing cancer, but we all face death at some point or another. It is imminent. It is the only sure thing that does await us all. I implore you not to wait until you have a face off with a life threatening illness to ask these questions. Don't wait because a time might come when it is too late.
Talk to your loved ones. Ask them how you can show them more love. Tell them you love them. Tell them how they have made a difference in your life. And spend time loving them well.