I know it was a long time ago, but I'd like to catch you up on the past year. I mean, I've left you in the dark for so long, and so much has happened. Here are the highlights of January, 2017:
Me, on January 1st, 2017
Kat the cat (who joined us in August 2016) was usually found
keeping my neck warm. This is her favorite place to lay.
My extended family celebrates Christmas in January.
This year we were only missing two of our boys! Rob and Aaron
weren't able to join us. We missed them! It was great to have nine
of our kids together at one time!
Audrey finally learned to smile for the camera!
(sadly, this skill was short-lived.)
Angela got her dress for the
upcoming Tim Tebow Night To Shine prom.
And Axel picked his first Tuxedo!
Angela and Axel spent a lot of time with friends,
attending dances and other great events.
Axel took a cooking class where he learned
10 different ways to cook eggs! He really enjoyed the class.
Axel was really busy this month, and played
adaptive floor hockey too!
I made another attempt to get our
medication distribution system under control. This one
Do you remember me? We've really been strangers the last couple of years, haven't we? A short visit here and there, coffee in hand, then off I go again.
I can't tell you what made us grow apart. Maybe it was our busy life? I mean, that would be totally expected given we have 6 active kids in the house, right? I'm pretty sure most of the reason is related to chemo brain, and my own inability to keep my thoughts organized, or to even keep the thoughts at all since my attention span is exactly zero now.
Don't think I haven't thought of you often! Oh yes, I have 50 or so blog posts in draft form. Yes, I came to visit but couldn't quite make it through the door to talk to you. I have had plenty of stories to bring you, I just can't seem to get them into written form. I try. I fail. I walk away.
I miss you, my blog friend. I miss pouring my heart out to you. I miss telling you the adventures of our kids, and our family. I miss telling you about the milestones that have happened, and there have been many!
As 2017 comes to an end, I want us to try again. Will you take me back? I can't promise I'll be perfect, but I'm going to try my best.
October is Breast Cancer awareness month. It is also Down syndrome awareness month, which we celebrate all month long here. But breast cancer? Yeah, not celebrated quite so much.
In the next few posts (because I intend to write a few. Getting them posted may be a whole different thing. LOL) I am going to tell you about my true feelings about breast cancer, where I am mentally and physically. These posts may give you the impression I am a survivor basket case. Before you read any further I need you to know I don't spend my days wallowing in a pit of "Oh my God, I had breast cancer. Poor me!" It is just here with me. Every day. Every single day. This month I'm going to show you why.
I love looking back at our annual back to school picture! So fun to see the changes in our family. Some of the changes are bittersweet, like the loss of our pets, or a move. Most of the changes are fun to see, like addition of pets (if only I could get my cat to "stay") or kids!
First day 2008
First day 2009
First day 2010
First day 2011
First Day 2012
First Day 2013
First Day 2014
First Day 2015
(also known as the year Amos was new and wouldn't stay turned around! LOL)
Today our boy, our little boy, turned 17. I can't even believe that 7 years ago I had just learned about him. That tiny little boy. Now he's all grown up! He's even shaving. Lord help me!
Today cannot pass without acknowledging the most important people. Axel has two families in Serbia: His birth family, who love him very much. They love him so much they let him go to the other side of the world to have a life he would not otherwise have. His mother, his father, and his brother. They are reading this post (and I know they've been waiting all day for pictures!) To them we are so thankful! We look forward to the day we can bring Axel back to Serbia for another visit.
Then there is his foster family, who cared for him for three years. They have a very difficult job, getting kids out of the institution, then preparing them to live in families. They soon make room for the next foster child. Thank you!! Several of their foster children who have Down syndrome are now in the US, living with families.
When I asked Axel what kind of cake he wanted, he requested "Blue cake Mom." All of you reading know I am not the greatest cook, but those bakers at HyVee? They do not disappoint! I found a blue cake!
Our friends the Stumbo's joined us for Axel's big day.
All our kids love birthdays (some just because there is cake!) But Angela and Axel have a special bond. They are true brother and sister, but also best friends. Here we're all signing and singing "Happy Birthday."
17 candles is a lot of candles to blow out!
Angela had a special gift for Axel. She prepared it just for him. Maybe you recognize it?
I posted an update on our GoFundMe page, but I know not all of you reading here also make it over there. I'm just going to copy and paste here. If you feel you would like to help us along, please CLICK HERE to visit our gofundme page.
Tonight I am incredibly greatful to those who contributed $2017 to our boy. Some of you contributed multiple times. Names came up that I have not heard in years, but you were here, cheering me on!! I cannot...ever...thank you enough.
I will admit, I am human and I am frustrated. I have just one run left. Only one, and am $2983 short of my goal. I feel like I failed Amos. On Tuesday Amos will be at the finish line (my front yard) waiting for me and I will have to tell him, "We're almost there buddy. Not quite yet. I cannot be your forever mom yet. Soon, but not yet."
But have I really failed him? I have to remember that 8 weeks ago I was incredibly out of shape and couldn't run a single block. Over those 8 weeks have run a total of 51.96 miles, with three left to go on Tuesday. Every mile has been with Amos' smiling face in my mind. That little boy in the coral colored shirt. THAT is my boy!!! I have loved him every day for two years and 3 months. I have brushed his teeth, combed his hair, took care of him when he was sick, nursed him back to health after surgery, taught him to chew his food, use a toilet, and sleep in a bed. I have done all these things because I am his mother. I chose to be his mother, and all those things are just what mother's do. We don't do them for pats on the back, we do them because we love and that is our job. So with that, I will leave the rest to God. God has made sure our needs have been met with every single one of our adoptions, and He will for Amos too. Its just doesn't always happen the way I want or expect. Thank you again for all who have supported me in my Run for Amos.
First, let me tell you, three years out and I still have trouble saying things like, "Today I'm seeing my oncologist" without my stomach turning in knots. The word oncologist doesn't belong in *my* vocabulary. It belongs to other people. THOSE people who have cancer. Oh wait...that was me, wasn't it? Three years and I'm still not used to saying it. A life-time of oncology appointments to go.
I once said to my doctor, "I need to stop thinking of myself as a cancer patient. I don't have cancer anymore. You took it out. Chemo killed what was left. You people rebuilt my body. Why can't I just move on?" I could tell from his face he has had this same conversation many times with other breast cancer survivors. "You had breast cancer. You will forever be a cancer patient. Some days you may not think of it at all. Other days you may feel fear, anxiety, and even panic. For some people this will decrease as time goes on, but for others it gets worse. All of it is normal."
Why all the worry? Every year out from diagnosis is another year that cancer could rear its ugly head again. We are given a long list of symptoms that, if noticed, warrant a call to our oncologist: back pain, unexplained fevers, unexplained fatigue, abdominal pain, bone pain, loss of appetite, severe headaches, seizures...the list goes on. You probably notice these can be normal, every-day aches and pains, yet for the cancer patient they can trigger worry. "My back hurts. Why does my back hurt? I haven't done anything for my back to hurt. Maybe there is cancer in my spine! My belly has been tender for days. Why? Maybe I have cancer mets in my liver!" Take me for example. The last couple of weeks I've been running fevers for no apparent reason. One of the chemo drugs I was on causes Leukemia in approximately 10% of those who received it, and the survival rate of those with chemo-induced leukemia is next to nothing. So, when I started running fevers for no reason, it has been difficult not to panic. In my head I say, "The chances of actually developing that leukemia is very low. 90% of patients on that drug do NOT develop it, so stop worrying." But, if you've been reading here for any length of time, you know that rare is the norm in our house.
So, as I said above, today was my three month check up. Well, really it was 6 months, but anxiety preventing me from going three months ago. I know, I know, that doesn't even make sense! But I just couldn't do it. Walking into that building causes me to break out in a cold sweat, my heart races, and I always...always...end up crying in the exam room for some odd reason. Today I was not going to do that. Today I would walk in, get my blood drawn (OMG! Maybe this time they will find tumor markers in my blood!) I would ask my questions and get the heck out of there! I don't drink wine, but today it sounded really good.
Well, wouldn't you know, they have a new thing in place at my oncology clinic. It is a quality of care survey that will remain in my chart, and they wanted me to put down how important various things are related to my care. Think healthcare directive here.
"On a scale of 1 - 5, how important is it for you to be pain free in your final days, if "pain free" means you take medications that make you unable to function or think clearly."
Seriously?????
I felt my chin begin to quiver. Doggone it! I was NOT going to cry at this appointment! I started to take deep cleansing breaths.
"On a scale of 1 - 5, how important is it for you to receive nutrition by any means necessary - such as a feeding tube - if you are no longer able to eat by mouth."
As I looked at the paper, the tears were threatening to spill from my eyes. Blinking would have made them fall for sure. The paper became blurry as my eyes filled. The nurse finished her tasks and left me alone with that form. I quickly reached for the box of tissues, dabbed my eyes, and shoved the tissue into my purse. "I will NOT cry for the doctor this time. I will NOT!" How does one answer these questions when one is not dying? What if I say today I don't want a feeding tube but in that situation I change my mind but can't voice that decision? This is a stupid form!"
I finished the form and pushed it away.
Finally my Oncologist entered the room. He had to do a double take, looking at the name on my chart then back at me, since he didn't recognize me. (that is another post.) I told him about the fevers. He looked at my blood results and said it looked fine from his perspective but encouraged me to see my primary doctor if the fevers continue. He did his exam and gave me the all clear to not return for 6 months. (WOOP WOOP!!!!!) And do you know what? I didn't cry for him today. Nope! I maintained my composure. I asked intelligent questions, and I made it out of there without hearing those words "you have cancer" again.
A couple weeks ago I posted about Amos, but for some reason the link wouldn't work so I'm attempting again.
Back on April 3rd we packed up the family for a 10 hour road trip to Amos' sending state to finalize his adoption. FINALLY he would be forever hours. We were so excited! He has been with us two and a half years, it is high time to have this done.
Only it didn't happen that way. We arrived in the sending state to appear before the judge, only to be told we would have to start all over here in Minnesota. All the money on attorney fees we had spent was thrown right out the window. Whoever said adopting from he US is less expensive has no idea how difficult, and expensive, it actually is. You can read the whole story here, and why I'm "Running for Amos" to raise the last of the fees needed to complete his adoption once and for all.
******The widgets aren't working on blogger, so please CLICK HERE to read the full story and find out why we're having to start over. And if you feel like it, please share.*****
The use of medical cannabis is a hot topic in the disability community these days. I mean, what? People are considering giving POT to their kids? How can this even be considered a good thing? Let me tell you...
I think it is safe to say, everyone who knows us knows which of our kids is most challenging. Abel is so severely damaged by his first 10 years in institutional care, and we took a huge leap of faith by agreeing to add him to our family. Every moment in Serbia with him we questioned if we were doing the right thing. We knew the alternative. Because Abel was basically a wild animal and the institution staff could no longer manage him, in just a matter of days he was being sent to the adult institution in Subotica. (Soo-buh-tee-tsa) It is a bad, horrible place that no animal should ever experience, much less a human being, and certainly not a 10 year old boy.
After several days of twice-daily visits to the institution we were allowed to take Abel back to our apartment in Belgrade for the weekend. As we walked out the front doors, the last thing his caregiver said to us was, "Oh, and he sleeps great!" I turned to Dean. "You know that means he doesn't sleep at all, right?"
We took a child who had slept in the same institution his entire life, had the same food day in and day out for 10 years, and brought him to an upscale apartment owned by my friend. With people who don't speak the language or cook the right foods. We were scared to death. I don't know what we were more afraid of: that he would destroy the apartment or that he would destroy us. With the shortest attention span I have ever seen in a 10 year old child, we tag-teamed until bedtime. Finally, all three of us exhausted, we put him to bed for the night. That caregiver's words came back to us. This is what he did the entire night while our hearts broke, wondering if we were every going to be able to help him.
The following Monday we brought him back the institution as scheduled. Again, we were asked if we wanted to move forward with this adoption. We could not walk away with the knowledge of his imminent transfer on our conscience. We knew this would be hard. We knew we were taking a risk. We felt we had all the tools available to us to make it work, if it was possible for it to work. We also knew that even if it didn't work, even if he could not function outside of institutional care that he would still be better off in the US than in a place like Subotica.
Abel has made great strides since joining our family four years ago. He is reading sight words, doing some addition and subtraction, building vocabulary at lightning speed, and has more than doubled in size. He turned 14 in April! But to say this has been easy would be a lie. Abel challenges our patience more than any other child in the house. He is a very intense young man. I don't know how to explain the energy that emanates from his every pore. It is electric. Like a static shock when you touch metal, you can feel his energy when he comes near you, and "near you" is an understatement. Abel doesn't yet understand personal space and the phrase "please back up" is commonly used here.
Abel doesn't play with toys. He has some things that he likes to use for self-stimming behaviors. If he is allowed, he will spend hours of every day spinning a ball on the floor, or dangling a small stuffed animal. (remember his block he had in Serbia?) While it would be really easy to just let him do what he wants all day, we don't. Thankfully he DOES like to have a job. He is our go-to man when we need something heavy carried up the stairs, like a basket of laundry or groceries. He LOVES to carry the groceries because then he's the first to see what we brought home. ;-) He is still very food obsessed and spends many ours of every day orbiting the kitchen in hopes we will feel sorry for him and give him another snack, even though he may have just had a snack five minutes before.
We have discovered a way to burn some of his energy. Both at home and school, as a reward, Abel earns time on the treadmill. He runs between 3-5 miles on the treadmill every day. Did you catch that? *As a reward*!!! When he's not running on the treadmill he's jumping on the trampoline. He jumps high. He jumps hard. He jumps at a steady pace.
Those activities I've described above are Abel's life. It is no surprise that last year he was diagnosed with severe Autism and PTSD (as were Audrey and Amos) With Abel in the throws of puberty, his energy became even more difficult to manage. His intensity increased. His anxiety, which is through the roof, became worse. He started digging holes in the palm of his hand and digging at the end of his nose. He bit holes in his socks and rubbed his big toe to the point of blood blisters. Thankfully he doesn't really acknowledge the other kids are here so it is very rare there are problems between him and the other kids. Still, he was escalating with Dean and with me, and we didn't know what to do. He has been on a cocktail of anti anxiety and anti-psychotic meds since he came home. Some have been beneficial and others were not.
School was pretty rough too. He has an amazing team of staff at his school but it was all starting to fall apart. Finally he hit a point he was no longer functioning at school. As much as school is our respite from his intensity, it wasn't working for him anymore. We opted to shorten his days and do the majority of his schooling at home.
For the last year we have been researching the use of medical cannabis for kids who have Autism and related behaviors. In Minnesota the use of medical cannabis is approved for children if they meet a specific criteria. Abel has very severe tics (some related to autism, and some we know are related to severe PTSD) which interfere with his ability to function much of the time. Abel tics 5-10 times per minute while awake. The doctor submitted her approval to the State of Minnesota, and we in turn jumped through all the necessary hoops to get Abel started on medical cannabis.
In Minnesota the use of medical cannabis is highly regulated. There are a couple of approved labs, and quality and purity are closely monitored. All of that comes at a high cost. Since insurance does not cover medical cannabis we pay it out of pocket. Because it is state, but not federally mandated, schools cannot administer it. If we fly we cannot take it on the plane. We cannot cross state lines with it. And yet, nobody has a problem if we give him a cocktail of anti-psychotic drugs with an laundry list of side effects. The cannabis has no side effects. None.
This video was from Abel's first day on Medical Cannabis. I wish I had thought to take a video the day before he started. He had NO attention span and there is *no way* he would have attended to this task, or tolerated the frustration of me correcting him.
Abel has been on medical cannabis for two weeks now. The effects have been dramatic! He still has tics, but they are much less intense, and he's no longer injuring himself. He is no longer obsessing over food and when we're going to eat, and doesn't feel the need to constantly orbit the kitchen. The three hours per day he is at school is now cooperative and and back to fully participating. In fact, if there was more time left in the school year we would put him back to full days. It is clear to us that choosing to try Medical Cannabis for Abel was a good choice.
Four years. Four very interesting years. We sure do love this guy!!
