Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, February 21, 2015

Ankles, Knees and Guided Growth Systems

Audrey is one very flexible girl. People like to use the term "double jointed" but there really is no such thing as being double jointed. A person can have loose ligaments and tendons, or ligaments that subluxate (slip out of place), but no double joints.

Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.

Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.

The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.

Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.

We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.

Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.

In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!

The first week of May Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!

After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.

As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.

So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year. 

Friday, February 20, 2015

What should I do?

I'm making changes in my life. Some are evident to those around me while other changes are more personal, to be kept to myself as I strive to be a better person, mother and wife.

But I also want to try new things. LOTS of new things! I think I'd like to try something new each month and post about it here. What are some things that you have always wanted to try but would rather watch me do instead? Disclaimer: jumping out of airplanes and going underwater is not allowed. ;-)

Monday, February 16, 2015

Before and after

A friend of mine is getting ready to start the process to bring another child home. She asked me for before/after pics of my kids. It is amazing the changes that happen to these kids in just a short time home. I wish the emotional healing happened as quickly. Sadly, it takes years to heal the deep wounds caused by trauma and lack of care in the institutions. One must also consider the trauma of being ripped from all they know, moved to the other side of the world and forced to learn a new language and culture outside institutional walls.








Tuesday, February 10, 2015

We thought we were done!

We thought we were done adding to our family, but there was one more member we didn't know about.

Meet Kat the Cat.
She is a rescue, approximately 3-4 months old. Just a sweetheart!


This is her most favorite resting place; right on my chest where she purrs and keeps me warm. It does make typing on the computer a bit interesting, especially when she's in a mood to chase the curser around the screen. 


Kat and the dogs get along very well. She likes to get a drink whenever one of the dogs does.

The kids love her, especially Abel who is oh-so-gentle with her!
When she purrs he likes to lay his head on her to feel the vibration.



Wednesday, February 04, 2015

Its been awhile

Hi everyone.

I'm still here. We're still here. Life is good, just very, very busy. I like it that way! I have some projects underway I want to blog about but I'm having a lot of trouble putting my fingers to the keyboard these days.

Tomorrow I will have my 6th surgery in 10 months.

Oophorectomy. Ovary removal. Take those suckers out to decrease the level of estrogen in my body. Decrease the estrogen that fuels my cancer. Its just an outpatient procedure, but thats how they do a lot of these surgeries now. Three of my major surgeries have been outpatient and I was home in my recliner - heavily drugged - by 5:00 pm.

It is kind of weird that Dean and I have a routine worked out for when I have surgeries: who does what to get the house ready for me to be out of commission, what to do with the kids on surgery day, knowing how long it usually takes for me to wake up from anesthesia, get through recovery, etc. Who in the world makes surgery part of their normal? Today I was getting kids of buses, telling drivers who will be here with the kids tomorrow. One of the drivers said, "Well, you always recover so well and jump right back into life."

"Always" because this is normal for us. That's just weird.

And yet there is always that tiny fear. In the last week people have made comments like, "This will be a piece of cake compared to your other surgeries." and "You'll be back to yourself in no-time." Those statements feel like a foreshadowing to me. Kind of ominous. Like this one surgery that is supposed to be so simple may not go so well. But I will do what I always do, making sure Dean knows where all important documents are, just in case.

You'll be happy to know my left foob (fake boob) is looking fantastic as my plastic surgeon continues to expand it. It almost looks like a nipple-less breast now. Oh, oops! I almost forgot that the expander slipped under my arm so it looks like a nipple-less breast under my arm. Aren't you glad I don't post pictures?

My right side, the one with the horrible infection over Christmas, has healed nicely. In the world of breast cancer reconstruction that means I don't have open wounds anymore. What I do have though, is a huge dent and some creases that don't belong on a woman's chest.  All my tops look a bit odd with only one boob. Occasionally I wear a prosthetic but I get so HOT with it. Most of the time I just wear bulky sweatshirts. This is the first time in my journey that I have felt uncomfortable with my appearance. As you can imagine I'm looking forward to April when I can start rebuilding that side again, and next fall (next FALL!) when I can have my final surgery.

So tell me, what have you been up to the last month? What is consuming the majority of your time? I'm making some changes in our life that I can't wait to tell you about. Where do you feel you need to make changes in your life?

Tuesday, January 13, 2015

Hello 2015: Pt 2

Back in mid November I met with my oncologist. I hadn't been back since about three weeks after I was done with my last chemo and I was WAY over-due for a check up.

I thought I was done. I had a lumpectomy, then chemo, then mastectomy. I can't take Tamoxifen though, and my risk of recurrence without that drug is about 25% so I need to get my ovaries out to reduce my estrogen related risks.  Still, I had done everything I needed to do. All that was left was finish the reconstruction process and move on with my life.

I was stunned, literally brought to tears, when my doctor insisted I go on a drug called Arimidex. It is not just this drug, but that I will have to take it in combination with another drug called Zometa. This is given as an IV infusion every 6 months as long as I'm on the Arimidex. The two drugs have a combined list of side effects that is daunting. But what are my alternatives? At this point my risk of recurrence is very high.

I was getting tired. This is a long battle and I am weary. As much as I remind myself that I am alive, that I don't have cancer anymore that we know if, that there are others far worse off than me, I could still feel myself sinking. I was no longer able to see the positive in much of anything, and my sense of humor was disappearing. Surely with all the things I have done so far I didn't *really* have to go on these drugs? I sought a second opinion.

My new oncologist explained things to me so much better. There is no doubt in my mind now that I must go on these drugs. But, he wouldn't let me leave without having a bunch of things done and getting other visits scheduled. Another to-do list for me:

1) get a ton of bloodwork done, 17 vials drawn. One of the tests will be to look for a genetic marker for strokes which will help in decision making related to cancer treating drugs in the future.

2) Scheduled an appointment with the Onco-gynolcologist. She will be doing my ovary removal, hoping for surgery the first week of February.

3) did a DXA scan to check my bone density. This is crucial before starting the other drugs since they can deplete minerals from the bones.

4) I must drop 60 lbs as soon as possible. Even though my ovaries will be gone, the adrenals still produce estrogen as does body fat. I need to have as close to ZERO estrogen in my system as possible. I am scheduled to see a metabolic specialist from Mayo.

5) I have been crying for two months. Tears that come out of nowhere that overwhelm me. The past eight months combined with the prospect of five years on the new drugs I have to take, throw some surgeries in there and a major setback to my reconstruction, and my emotions were getting the best of me. I had no control over them anymore. My new oncologist very gently suggested I talk with my primary care physician about getting on an antidepressant. "This is a very normal response to cancer and its long-term effect on your life. But I need you thinking positive about the next five years, not dreading everything and talking yourself into every side effect before you even start taking the drugs."

Ok, yeah, he had a point.

Up next: Hello 2015 pt 3…Pulling up my bootstraps, with a little help.


Sunday, January 11, 2015

Hello 2015, pt 1

2015, you're going to be a better year, I just know it!

However, if 2015 is going to be a better year, I need to take some steps to make it happen. 

In my Christmas Eve post I mentioned I had been in the hospital. Those who follow me on the FB know some, not all of the details. Here is a quick recap (which will be followed by changes for 2015):

Remember: September 12 - double mastectomy, October 27th - surgery to replace both tissue expanders and clean up infection and scar tissue.

Week of November 17 I went in for a tissue expander fill, but first asked my doctor to take a look at my incision from my last surgery. She decided to hold off on the fill that week and wanted to see what the incision was going to do. 

November 26th, day before Thanksgiving: I have an area of really thin skin (which really means no sub-cutaneous fat) that wasn't happy being stretched and was splitting open. The surgeon did a scar revision in the office. Come back in two weeks.

Thanksgiving Day I get hit with Influenza.

December 10th: incision still isn't looking good. Plastic surgeon removes a lot of fluid from the tissue expander to allow enough skin for another scar revision in the office. Come back in two weeks.

December 17th: Incision is looking better, but no fills allowed. Lets leave it alone until after the holidays and just give the skin time to heal.

Friday, December 19th: My sister and I spent a fun Friday night playing with my polymer clay buses. Aren't they cute?


Saturday December 20th: Dean and I do some Christmas shopping, arrive home about 5:00. At 6:30 my pec muscle on my problem side is suddenly very sore and stiff, as if I've been lifting weights. I have very little sensation in my chest so I'm concerned that I can feel this. About an hour later I spike a 103* temperature. I think I have the flu again and call the hospital to see if I can come in and get Tamiflu since I'm in the "high risk" group. I decide to wait until morning because I have a suspicion this isn't the flu. I go to bed hoping the fever breaks, but I am miserable.

Around 2:00 a.m. I woke up with an odd sensation in my chest. I went to the bathroom mirror and lifted my shirt. I was a bit horrified to find the "odd sensation" in my chest was a significant amount of swelling. Crappity crap crap!!! I decided a few hours isn't going to make much difference so I went back to bed.

8:00 am: Called my surgeons office. The Dr. on call told me to head to the ER where an ultrasound is done and there is a huge amount of fluid that they drained and sent out for cultures. (so very weird watching on the screen as this extremely long needle is inserted into my boob and the fluid is all sucked out! While they were waiting to admit me they went ahead and started me on two different oral antibiotics (vancomycin and Gentymicin) Only I reacted to the Vanco so they added benadryl which knocked me out for several hours.

I stayed on IV antibiotics for two days while also getting more benadryl with each dose so I mostly slept. I still had a 101 - 103* fever so sleeping was fine with me! My chest continued to swell. I was not even an A cup before the infection but now I was swollen so huge it took both my hands to cover the area. The swelling went all the way around to my back. Thankfully it didn't really bother me much due to lack of sensation. Still I was on pain meds because my BACK was killing me from the hospital bed. LOL I made Dean come into the bathroom in my hospital room to take some pictures of my chest. Nothing like some really bad porn shots for the family scrapbook! LOL

I was so upset by this whole turn of events. I knew I would be having surgery and I would be flat on that side. No breast at all, not even a fake one. I wanted to be done. Just leave me alone and I will be flat. I don't care! I didn't care about bald and I don't care about flat. But I DO care about having one boob (called a "uni-boob" in the breast cancer world) and I did NOT want to do that. DID NOT! I was sick, I was miserable, I was crabby, and I had a massive caffeine withdrawal headache that I could barely see past. All I could do was cry or snap at someone. I was one hot mess!

 Tues December 23rd I had surgery remove the tissue expander and clean up the infection. Afterword my surgeon told me it was a mess in there. I am now flat on that side and maybe almost a B cup on the other side. I am not wearing a prosthetic because, like wigs, they pretty much drive me crazy. Not only is it very obvious even in clothes, but the fabric of all but the thickest materials falls right into the very deep DENT I have in my chest. 

Christmas Eve: Discharged from the hospital, yet another drain in tow.

Coming up: Meeting with my new oncologist and decisions that must be made


 

Wednesday, December 31, 2014

Good Riddance 2014

Dear 2014,

You were not super kind to us. You are certainly not my favorite year. Thankfully many of our really good memories of you are related to Audrey, getting her home and watching her grow and thrive in our family, as well as memories with the other kids.  But you also brought with you Cancer, many surgeries, chemotherapy, mastectomy and the beginning stages of breast reconstruction and much heartache to go along with it all.

You, 2014, are done. Good Riddance! 

Saturday, December 27, 2014

Just One More Time Mom

When my adult kids were little, there were several occasions when they were involved in some REALLY fun boy activity, like BMX racing. Eventually the time would come to load up the bikes and go home. I'd holler to the kids it was time to wrap things up, to be met with, "Just one more time around Mom, ok?"

If your kids EVER say that, STOP. Stop all activity RIGHT THERE. "Just one more time" is a warning from the universe an accident is about to happen! DO NOT allow the activity to continue. It took me a couple times to learn this lesson, but learn I did after a couple emergency room trips for stitches with a kid or two.

There was also that one year, at the end of summer. The night before school started I made the mistake of saying to my sister, "Wow! We made it through the whole summer without any stitches or broken bones!" Silly me, there were still a few hours of summer left! By summer's end just a few hours later Tyler was sporting 80 (yes eighty) stitches in his head.

You think I'm going to tell you someone here got hurt. Don't worry, I have not done any prophesying over any activities around here so as to jinx the kids. Instead I thought things in my head, about me.

In my Christmas Eve post you may have picked up mention of a hospital visit. (and of course those who follow me on FB know about it.) On December 20th I started running a very high fever (103) and thought I was coming down with the flu. By morning one of my reconstructed foobs was hot and swollen, feeling like it was going to burst open. I ended up in the hospital ER, having a large pocket of fluid aspirated, then being admitted for a couple days of IV antibiotics before having surgery December 23rd to remove the tissue expander on that side. We left the other side alone, but the troublesome side I will have to start all over with reconstruction in a few months. I made it home on Christmas Eve and we still had Christmas here with Dean's family on Christmas Day.

But through all of these problems I've had through the reconstruction process I have always thought to myself, "Well, at least I'm not one of those women who end up dealing with necrotic tissue and open wounds."

Do you see where I'm going with this?

Yesterday my new incision opened up.

I've talked to my doctor and learned how to care for the wound until I see her in clinic on Monday. The problem is a large area of thin skin left from my original surgery back in September. I just doesn't heal well. I'm not a happy camper. That side now looks like a horror movie.

And so I'm going to stop thinking. Anything.



Wednesday, December 24, 2014

Twas the Night Before Spring Christmas

Twas the night before Spring Christmas
when all through the house
the people were frantic
without Mom about.

The stockings were hung
the packages wrapped
in hopes that our Mom
soon would be back.

When what to our wondering ears did we hear?
Dad and Mom home from the hospital
and Mom with good Christmas cheer!!

We ate Christmas Eve dinner
and Dear Abel soon crashed,
But the rest of us soon to the kitchen we dashed!

We got Santa his cookies and wrote him a note



We read the Christmas eBook, the paper one lost and remote.

Then Mom, in her infinite wisdom did say,
"Lets  dance to some Jingle Bells to end our great day!"


And we each heard her exclaim
As she tucked us in tight,
"Merry Christmas my loves! I am so blessed tonight."

Friday, December 19, 2014

The Bucket List

Our mortality has a way of slapping us in the face sometimes. Cancer will do that to people. It causes people to realize they have a lot left to do. I have a few things on my list I have always wanted to do but never had the time, money, or the guts to try. Here's my list, in no particular order:

1: Ballroom dancing - ok really I would like to try any kind of dancing. Well not ballet, as I would be an insult to the art. But Ballroom, hip hop, Jazz, Tap…all of those. I want to try something.

2. Skydiving. Actually Angela and I want to do it together but I think I'm too afraid to do it.

3. Ziplining. I want to go to some tropical place and ride a zip line through the jungle. As long as there are no snakes I'll be fine.

4. Visit Australia. I need to make this happen soon so I can see my friend K. We have known one another for about 10 years through the Down syndrome community. A few years ago K. was diagnosed with stage 4 breast cancer. They day she told me I wanted to jump on a plane right then. Somehow I need to make this happen.

5. Honeymoon. Dean and I still need to go on our honeymoon. Maybe we'll do that in Australia?

6. Be on a talk show. Seriously. Ok, not likely to happen but when it does hopefully its not Jerry Springer or Maury Povich.

7. Learn to sculpt with clay. I want to do it for real and make  nice stuff. I just need to learn HOW.

8. Tae Kwon Do. Yep, I want to do that too. If I do ballroom dancing and TWD at the same time, I should get into pretty good shape, right?

9.

10.

Ok, thats all I can think of at the moment. I know the others will come to me as they frequently do during the day! How about you? Whats on your bucket list?

Sunday, December 14, 2014

In Memory of Sandy Hook

Today our nation's heart is heavy as we remember this day, December 14, 2012 at 9:35 a.m. when we cried out first in disbelief, then anguish as the faces of 20 darling children and the 6 adults who tried to protect them appeared on our TV screens. Twenty six lives lost in a matter of a few seconds.

Today my heart aches with the family of my high school classmate,  JoAnn (Jo Jo)  Bacon, her husband Joel and son Guy as they continue to find their way in life without their precious Charlotte.

In memory of the lives lost the organization "Where Angels Play" was started, dedicated to creating accessible play spaces in the names of each person lost on that fateful day. If you're ever in the West Haven, CT area you can visit Charlotte's Playground. You can find the others on the playground locator by clicking here.

Charlotte family also started their own organization in memory of Charlotte and her love of all animals, especially dogs.

The mission of Charlotte's Litter is to create a team of therapy dogs all around the country who can respond in a crisis situation. As a dog owner and trainer, I can vouch for the comfort dogs and other animals can bring into stressful situations. 

Today, in memory of Charlotte, I would like to ask you, my readers, to consider donating to Charlotte's Litter.  And today, hold your children a little tighter as you remember the families of Sandy Hook who must carry on.

Thursday, December 11, 2014

Never say Never

In April 2010 I met a tiny little boy in Serbia. His name was Sasha and he was just a toddler, not yet two years old.  But Sasha was different than all the other kids in the the institution. Sasha is a congenital quad amputee, meaning he was born without arms or legs.


 Little Sasha had an amazing spirit that carried him through the months he had spent in the institution.  Although he was living in an environment lacking in stimulation, he did his best to play with the few things provided to him. I knew at that time that Sasha's family was on their way for him. Just a couple more months and they would be holding him in their arms.  Never again would he spend his days laying in a crib, calling out to caregivers who only answered when they had a spare moment.

Soon, in June 2010, HIS day arrived! It was finally HIS turn. Devon and Jeremy Toomey answered the call to bring their little man home. They named him Bowen.

When they arrived home in the US, they sought out services from Shriners and local physical and occupational therapists. Along the way one therapist did an assessment and proclaimed that Bowen would never be able to sit up on his own, much less get around any way other than rolling on the floor. But the Toomeys knew better. They knew they should never try to limit their child.

Just a few months later Bowen sat up on his own.


Bowen struggled his way through lots of skills: Learning to crawl, to play with toys, to feed himself, to chew his food and accept food with different textures. But, have I mentioned that Bowen is an amazing kid? Bowen conquered all those things. Every.single.one.of.them.

Next came swimming, 

And using his helper legs
(the feet are backward to give him better balance)

Using the iPad when he visited our house.


Keeping up with his brothers is important to him. He wants to do everything they do, and he does!

Bowen is a big guy of six years old now! You name it, he is learning or has learned to do all the things little boys his age do. Nothing stops him. Even when things are hard he is determined to succeed, or at least give it a good try!

Bowen is in school now. Check out his latest skill: writing. I know many of my kids could not write this well at 6 years old!
video

To the therapists, the doctors, the "specialists" who see kids like Bowen all the time, and to parents who  are considering adopting a child with special needs, please…if you listen to nothing else…listen to this one thing:

NEVER listen to "NEVER". 

Wednesday, December 10, 2014

A Little About Us

This is a repost from 2011, with some updates in italics.

This is for all of those who are new here, who haven't read all the way back to 2005 when I started this blog. LOL Seriously, I have been blogging since 2005. Wow.

 15 interesting facts


I'm Leah, and that's my guy Dean up there who I'm clinging to. We love each other to pieces! Seriously, life just gets better and better. Dean and I met on August 22, 2003, and committed our lives to each other in July 2005. We have trouble remembering the date for some reason. It's either the 23rd, or the 27th. Or maybe it's the 24th. (if we were smarter, we would have just done it on the 22nd so we didn't have to remember another date! Shees!) Seriously, every year we have this discussion, and I have to call my sister who's granddaughter was born that same day which is why she wasn't present for the event...cuz she was busy catching a baby. Except she's usually waiting to call me to ask when our anniversary is so she can wish her granddaughter a happy birthday. Clearly it's a family thing. We like August 22nd better anyway. And just so you know, there is a reason we can't remember the date, and it has to do with the fact both Dean and I have a couple anniversary dates running through our heads, mixed in with birthdays of kids. But really, August 22nd is that date that is important to us, because that's the day our lives changed forever.
July something, 2005

15 Interesting facts.  (this is gonna be tough, because I am not that interesting!) So, in no particular order:

1) I was in the U.S. Army for 8 years. I was active duty reserve for 3 of those years, and then I went IRR after my second baby was born. I LOVED the Army and wish I had stayed in longer. But I was young and dumb. And impulsive.

2) I have been married a lot. It goes back to that impulsivity thing. I first married when I was just barely 19. I'd known him 3 months when we got engaged, and we got married on our 7 month anniversary. I'm pretty sure I caused my mother some psychological damage. But, I had two beautiful boys with him, Noah (27) and Tyler (26). We were separated within 4 years and divorced shortly after. I was young. And impulsive.

3) When I was 26 I remarried. This was not on an impulse, and we'd known each other more than a year by that point. He had two boys who I consider my own, since I raised them for 10 years. Rob will soon be 29, and Bryon 26. Together we had Angela. We were married 9 years. I learned some things.

4) When I was ready to let someone into my life again, I made a list of qualities that must be met by anyone I dated. He must have a bike, (read the link, there are more details there) can't smoke, have good relationships with his parents and siblings, own his own home. Dean met 4 of the requirements, lucky duck!

5) One year ago Dean was 100% against adopting. It was great for other people, not for us. (update: we now have 4 kids who are adopted) 

6) Axel  has been with us for almost 4 months now. (update: Axel has now been with us 4 years, Asher 3 years, Abel 21 months and Audrey 8 months.) 

7) Every day I catch find Dean scrolling through photo listings of children available for adoption. (Dean is no longer scrolling through photo listings.)

8) Dean and I love dogs. We had four but recently had to say goodbye to our Rubee. We miss her a lot. Over the last few years we've had a lot of puppies here too. I love puppies, but they are WORK! I don't miss the work. Or the poop.

9) I hate snow. I hate cold. Minnesota is the wrong state for us to live in. Then I realized that neither of our parents are here for much of the year because they are snowbirds. But the services here for the kids  are too good to move south, so we stay. Someday we will have a winter home.

10) I had a "Before I turn 40" list. One of those things was to get my own bike.
"Nooner" 2004 Vstar 1100 In this picture he's loaded for a road trip, making him look small! He's not!
What I didn't know is that before long I'd have to add "Spank" to the team. 


11) One summer I put 10,000 miles on my bike. Last year I only put on about 3,000. It was a sad summer for  Nooner, and for me.  You see, Nooner needed brakes, and all our money was getting put into the adoption. This year it will be better, I just know it! (the years have gotten worse, not better. I've had my bike for sale twice because I just don't get out and ride anymore. But then I think "It didn't sell because THIS is going to be my year. I have hope that summer 2015 I will be back to riding!)

12) In the past year, God has brought me to the most amazing places. They are not places one would choose to go for, say...a vacation. But I went, and our lives were forever changed because of it. Pretty soon Dean will get to experience it too, because there are plans in the works. (I have been to more great places, but never for a vacation. Always places that are life changing.) 

13) I hate cooking. No, really. I suck at it even more than I hate it. (I still hate cooking and I still suck at it.) 

14) Dean has a blog that he has abandoned. If you want to see him write more, you can go comment on it.  I happen to love getting his perspective on things. 

15) I am a full-time student. I just took this year off so we could complete adoptions and stuff. I go back to school in September, and have about 18 months left. Dean says he's retiring when I'm done and find a job. He cooks much better than me, so that will be a good thing.

And I've added one more:

16) I love my life. Every single part of it. It's the life God chose for me and He knows what's ahead. Everything from today is preparation for tomorrow. Whatever He's preparing me for, I can't wait to see!

Tuesday, December 09, 2014

Asher update: 3 years home

There was a disclaimer posted on the original blog post which you can find here.


Three years ago today Asher arrived home. I can't believe three years has passed so quickly, or how much this child has changed in just 36 months.

When Asher first came home he was 7 years old but stuck at a 6-12 month level. He was 40 inches tall and 31 lbs. He had just learned to walk a couple of months before and toddled around. Asher had never seen solid food, only baby food consistency. He did not know how to chew, he was not potty trained, and clung to me - or anyone else - like a baby rhesus monkey.

Three years later and Asher is now 10 years old. He is ALL BOY! He spends his days going over, under, behind or on top of everything that is possible to get his body into those places.

Asher had no communication when I met him, but now he is signing up a storm! He has a 1:1 interpreter with him in school and his vocabulary grows larger every day! Suddenly in the last couple of months he is trying really hard to say words. It is so fun to watch his attempts.

Asher has grown A LOT! He is now 60 lbs and 49 inches tall! He has developed a slap-stick type sense of humor and loves to be silly. When he gets up in the morning he signs "Good morning" before his eyes are even open, and asked me to sing our good morning song. He is quick to dish out a hug and kiss for his Mommy! Asher is very close to Audrey, the two of them often found hand in hand. It helps that they are in the same special education class together. He also likes to play with Abel a lot, but a bit more rough and tumble than with Audrey.

Asher has brought us three years of amazing JOY. To see him blossom from a shy, fearful little guy tormented by severe PTSD into this funny, loving little man just makes my heart full!!! Every day I thank God for bringing Asher to us, giving us the opportunity to witness yet another miracle.








Wednesday, December 03, 2014

She's leaving!

We have to watch Audrey really close. A couple times per day she decides she's leaving.


Don't worry. At the top of all exterior doors we very loud alarms to warn us when Audrey or Asher open the doors! 

Four Years Ago

Four years ago I was on the other side of the world, in the city of Kragujevac, Serbia. 

It is the day I was allowed to take this little man out of foster care!


It was a day of many sad goodbyes.

Goodbye to a family who had loved and cared for him for 2 1/2 years.

Goodbye to the foods he had always known.

Goodbye to the language he understood.

Goodbye to a life as one of "the have nots".

There were good goodbyes too!

Goodbye to being hidden away.

Goodbye to being forgotten and devalued.

I was a new mom again, and had no idea the wild ride ahead of me!

You can read the details about that day here. 

Tuesday, December 02, 2014

26 Years

On this night 26 years ago my then-husband, K. and I walked around the Christmas Tree lot, my ginormous pregnant belly leading the way as I balanced 15 month old Noah on my hip. December 2nd was my due date, and I knew if we didn't get the tree up that night it might not happen at all.

It was 1988 and I was 21 years old. We lived in this cute little house. (it was white with red trim in 1988) Imagine it buried under 2 feet of snow.


We put the tree into the bed of the old Ford pickup truck. It was such a cold night that night, the snow crunching under our feet as we hurried into the house. My husband wanted to let the tree stand outside overnight but I was insistent. It HAD to get put up inside. Tonight!

We got it centered in the tree stand and situated in our tiny living room. My husband sat down on the couch to rest and promptly fell asleep. I got Noah into his PJs and tucked into his new big boy bed, stopping in the baby's room to look into the empty crib. I put my hand on my belly, knowing very soon that heavenly baby smell would be filling the  room. I climbed the stairs to our attic and started carrying all the Christmas boxes to the living room. Up and down the stairs I went, box after box.

I checked all the tree lights and strung them on the tree, stopping now and then to stretch my aching back, taking inventory of what was left to do. One hour, two hours…three. Around midnight I declared the house decorated and lugged the now empty boxes back up the stairs and gave them a shove into the attic. Finally, I turned off all the lights and sat on the couch admiring the beautiful tree and the Christmas season ahead of us. It was then that I realized how badly my back ached, and that I was exhausted. I thought of all that was ahead of us.

I struggled to get my pregnant self off the couch and woke my husband to come to bed. I knew we'd be having a baby soon.

At 4:30 a.m. I was woken by a very STRONG contraction. Wow! I got up to go to the bathroom but had another contraction before I got there. I went back to bed to watch the clock. 90 seconds later I had another contraction. RUH ROH! My husband had already left for is early shift job. I picked up the phone to call him, "Uh, you better come home quick!"

"What? I just walked in the door 30 seconds ago. Ok, I'll be right there!"

Thankfully he only worked a few blocks away. So, too, were his parents. I called his mom to let her know we'd be over in a few minutes with Noah. My husband walked in the door while I was trying to tie my shoes. He grabbed Noah and the already packed diaper bag and headed for the car. He was moving about 30 times faster than me. By the time I got to the back door he was gone.

 GONE????

I called my mom. "Well, this should be interesting. He left without me." I wasn't sure what to do. I called his mom. "Is K. there yet?"

"He just pulled in the driveway. I'll run out and get Noah from him and send him back right away."

My contractions were coming consistently between 1 1/2 - 2 minutes and they were very strong. I wanted to sit down but was really afraid if I did I wouldn't get up, but have the baby right there instead. A few minutes later my husband pulled in honking his horn. I'm sure the neighbors loved that at 5:00 a.m.!

It only took us 15 minutes or so to arrive at the hospital. They put me on a monitor and checked my cervix. I was not even one full centimeter dilated! HOW could that BE???? UGH! I was so afraid they would send me home but the monitor showed my contractions to be very strong so they kept me. A few minutes later the doctor came in to check me again and I was at 4 cm so he broke my water. The very next contraction I told the nurse I felt like pushing. Her response? "Oh you do NOT! We *just* checked you and you were only at 4. Have a few more contractions and quit panicking."

Oh I was mad. The very next contraction I told my husband to call that nurse back to my room. "You better check me now because I am going to PUSH DAMMIT!" She wasn't happy with me. She was very rough when she went to check me, then started verbally back pedaling. "Oh wow! You're at TEN!!! The doctor LEFT the hospital!"

That movie-like flurry of activity happened and the next thing I knew it was 5:58 and I had a screaming 8 lb 10oz baby boy laying on my belly.


Raising Tyler wasn't always an easy job, but he sure made it fun!








Today Tyler is 26 years old. He is going to school and living his life. But he is THE BEST big brother to the 5 A's. He frequently helps us out on the weekends, and while I was going through chemo he was often here getting things done that I couldn't physically do.

For 26 years I have been his mother. You make me proud, Tyler!

Monday, November 24, 2014

4 months PFC

PFC = Post Final Chemo

My hair is the strangest color! It is really salt and pepper, but the color changes depending upon the lighting. If I'm in the shadows it is black. If the light is shining on it, it is silver. It is not silver tipped. The silver hairs are silver the entire length. The only thing I don't like is the fact its growing into a faux hawk. Yes, people pay to have that hairstyle, which I happen to think is dumb. Its not something I would choose for myself. LOL I'm anxious for it to get a little longer so it lays down.

One good thing though is I have significantly more hair than I did before chemo!


Saturday, November 22, 2014

His name is Asher: 3 years home


With the first step through the doors the familiar smell of the institution assaults my nose, the heavy odor of cooking smells overwhelming me. Five of us squeeze into the tiny elevator as I try to suppress the urge to point out it was only built for two, maybe three people.  It is a finicky elevator, and although it is new sometimes you have to jump a little bit to make it go. We arrive on the second floor and the social worker pushes open the manual door, all of us spilling out into the hallway as the wails of a child are heard from far off in the building. 

The head psychologist leads us down the hallway where three toddlers are sitting at a tiny table eating their lunch. She points to the child who's back is to me, his shaved head and tiny shoulders hunched over the plate of mush in front of him. 

"This is Lazar" she says as she touches his shoulder. 

The boy freezes, his spoonful of food halfway to his mouth. After a second he grunts, putting the spoon  in his mouth. He continues to eat.

Quietly I move to his side, kneeling beside the table next to him I put my hand on his shoulder. "Hello Lazo." I say in a quiet voice. His eyes never leave his plate as he pulls it closer to him, protecting it in case I should try taking it away. I feel a tear run down my cheek as I realize this tiny toddler, who appears to be two or three years old is really my seven year old son.

A minute later he is done eating. I gently use his towel-bib to wipe his face then offer my hand for him to hold. He willingly wraps his tiny fingers around my index finger, toddling alongside me down the hallway to the playroom. It is here I can finally get a good look at him. He releases my finger and moves into the room, quickly grabbing a toy to dangle. He looks at me warily, hiding behind his arm, his face expressionless and his eyes glassy. He stares off into the distance. At nothing.

When the psychologist says something to him his only response is to freeze and make a tiny grunting sound. 

Blank. I have never seen a child so void of expression.

"What do you think?" the social worker asks. "Do you accept this child? Does he meet your expectations?"

"Yes." I say.  "Yes this is my son."

And we called him Asher.


Over the next 10 days I learn all I can about him. He has only recently started to walk. He is extremely underweight. He is so very hard to reach.


But slowly….

Ever so slowly…

he comes to life.

Three years ago today I laid eyes upon my son for the very first time. This child who was lost within the walls of a Serbian institution found his way into our lives and hearts. This child who was so painfully afraid of the world,

now wanting to see,

to do

touch

climb

to try.

Papa is the favorite around here, but Asher is Mama's boy. So affectionate and loving. Eager to see the world and all the wonders it holds for him. Every day, as I watch my son so full of joy and wonder, I thank God for allowing us this precious gift.

Genesis 30:13 And Leah said, "Happy am I, for the daughters will call me blessed: and she called him Asher.

Deuteronomy 33:24 About Asher he said: "Most blessed of sons is Asher; let him be favored by his brothers, and let him bathe his feet in oil."