Last supper, plus dessert!

I thought it odd that I didn't get the usual "night before admission" phone call from the children's hospital where Angela would be having her surgery. I was on the phone at 6:00 am to verify what time we were supposed to check in. I'm so glad I did that!

As it turned out, there had been no phone call because Angela wasn't on the surgery schedule. At all Monday or in the near future. To say I was a bit irritated would be a huge understatement.

It was explained to me that after our consultation the surgeon called the adult GI we saw a couple weeks ago to verify which type of surgical approach was written in the orders. The surgeon - who has done all of Angela's surgeries in the past - explained to the adult GI that given Angela's history and the amount of scar tissue she has in her abdomen and stomach, he didn't feel comfortable doing an open procedure. Instead he requested the pediatric GI specialist be in the OR as well and together they do an endoscopic procedure. The scheduling people for the two doctors would need to get that set up, but I was to receive a phone call letting me know that surgery had to be moved to another date. I didn't get that phone call.

I didn't blow a gasket on the phone. I remained calm as Angela sat on the nebulizer in the background treating her current case of aspiration pneumonia. Yes, I remained calm. Ultra calm, ultra cool, and 100% clear that I expected this to be scheduled immediately.

Angela was so excited to be going to the hospital today. It is as exciting to her as a Taylor Swift concert, or a trip to Disney. She wasn't able to eat because of her not-scheduled surgery, and we were hopeful we could get her a last-minute slot. That wasn't to be, so when I finally made her some lunch she was a bit annoyed with me. "I can't eat. I can't eat that. I'm having surgery and I can't eat." Thankfully her hunger won out and eat she did.

This afternoon she wanted me to show her pictures of kids with gtubes and PEGs again (a PEG is a type of tube, usually temporary until the stoma is healed and a button can be put in a few weeks later)

Angela's surgery has been rescheduled for this morning, October 6th. Check in is at 8:00. She went to bed reminding me of the schedule, "You will wake me up, right mom? You will tell me its time to get dressed, but I can't eat. Nope. No breakfast for me. Then we will go to the hospital and I will get my I.V."  I swear, Angela is the only kid I know who likes IVs.

I'll try to post an update in the afternoon after surgery.

The last supper

Its 2:11 a.m. on Sunday morning. Monday morning she'll be admitted to the hospital to have her gtube placed. That means today is her last day to eat.

Can you even imagine????

I have a lot of hopes and prayers right now:

I pray that this is more difficult for us than it is for Angela.

I pray that she has been so uncomfortable eating that she is is *relieved* she doesn't have to anymore.

I pray that she doesn't have the wound problems she did when she was little and had a gtube. (we had one problem after another for four straight years!)

I pray that Angela understands how much we love her and want her healthy.

I pray we don't have any problems getting her insurance to cover the formula we want her on. The usual stuff is just junk!

I pray she doesn't get sick from all the favorite foods I'm going to let her eat today.

I pray that our spunky girl doesn't lose her spunk in this process.

And I thought telling my child I have cancer was hard

During Angela's last stay at the children's hospital, the pulmonologist said to me, "Whatever you do, don't bring her to one of the adult hospitals. She won't get the right level of care. We will continue to treat her here."

Ok. Well to go to the pediatric hospitals we have to have pediatric doctors. I tried to schedule an appointment with her old ped. GI specialist but was told I couldn't because she is 19. She would have to see one of the adult GI specialists there. I hate seeing new doctors with Angela. I hate having to explain 19+ years of medical history, what surgeries were done when and by whom. I just want simple. It is simple when we can go to someone familiar and I already trust. Its hard for me to not put a wall up before we even walk into the office. Thankfully I really liked this new doctor who agreed he should not be Angela's doctor. He was very nice, and very knowlegable. "You know, this is a very rare disease that she is too young to have." 

Yes. Yes I know this.

We discussed going out to Boston and the options that are available to us to treat this monster called CA. Unfortunately, because Angela's swallow study is horrible, he doesn't think she is a candidate for any of them. They wouldn't solve her problem. Unfortunately, this is the progression of CA. At some point the epiglottis stops functioning properly and instead misfires. It spasms with every swallow (You can't see it on xray video swallow. It is only evident using manometry, and we saw it 6 years ago when she had it done in Boston.) We could dilate her cricoid again, but it wouldn't solve the problem of the spasming epiglottis. We could inject the muscle with botox to loosen it, but we risk damaging the epiglottis further. There is no "win" for Angela. There is only lose and more lose. 

The Dr. confirmed what we already knew. Angela can no longer eat or drink anything safely. Never. Ever. Again. I have dealt with a gtube before. Angela had one until she was 4. She doesn't remember it, but I do. The tube itself is not that big of a deal. Its the psychological part of this process that is tough. 

In March of 2014 I sat in the car with Angela and told her I have cancer. At the time I thought it was the most difficult conversation I could have with my child. I was wrong. I didn't know what was ahead of us. This time I had to tell her she could never eat again. None of her favorite foods. Done. It makes my stomach turn in knots just thinking about it. 

But let me tell you what is scary. Nobody knows what comes next!! Nobody knows enough about this process to know the next step! Medical theory says this disease process moves downward through the GI tract, but does that mean her stomach will shut down? Her small intestine? One of her organs? Nobody knows the answer to this because people who have this disease die before it reaches this point. We don't know what comes next and it scares me.

The xray camera doesn't lie

....so she gets to the hosital via ambulance with a bottomed-out blood pressure. Long story short she had aspiration pneumonia again!! Ok, two bouts in three months is not a good sign. It was decided we would do another upper GI and a video swallow. At least those could get done here and not have to wait until we go to Boston. These are very routine tests. 

Angela is anything but routine. 

We did the upper GI first. Angela's nissen fundoplycation is still intact. She had the open procedure done at 11 months old. Amazing, considering they usually last 7-10 years. She did have distention at the base of her esphagus, and what appeared to be her hiatial hernia having enlarged a bit from previous years, but otherwise not a bad study. 

Next was the video swallow. This did not go so well. Oh, Angela did fine for the test, but the results were very bad. First, for comparison, you need to see what a normal swallow looks like. Sorry these are a bit tedious, but its easier that trying to explain.

This is a normal swallow in an adult.

video courtesy Neinia Ferguson

Now, here is Angela's swallow of thin liquids. It is easy to see where her airway is because the barium goes into it. You can also see the barium sitting in kind of a small bowl-type area just below her airway. This is the cricoid muscle that is so tight, it doesn't let all the liquid through. 

Next they would normally go to nectar consistency liquids, but we skipped that and went straight to honey thick. Not only will you see her aspirate, but you will also see that she has some residual stuck at the back of her throat. You and I would be coughing due to the sensation. Angela gives no reaction. 

Here come the solids. You'll see her aspirate. You'll see her tuck her chin to protect her airway. You'll see the solids stick in her cricoid. You'll see A LOT of residual food sitting in her pharyngeal area. You and I would be gagging. Angela gives no reaction.

Last, we send down some honey thickened liquid to help push the solids through the cricoid. The doctor asks her to cough because there is too much residual sitting that Angela isn't reacting to and its not safe. But Angela has lived her whole life like this so it feels normal to her:

Angela was discharged labor day weekend, with an appointment scheduled to see the GI specialist just a few days out. It is clear that the Achalasia has progressed. Her swallow study is significantly worse than it was a few years ago. Not only that, but she cannot swallow *any* consistency safely, including her own saliva. The decision is made that she needs to go back to a gtube.

Two words I hate: Cricopharyngeal Achalasia

I need you to go back on my blog several years. Six years, to be exact. You'll want to read this post, particularly the last two paragraphs. Then come back here.

Key word: Cricopharyngeal Achalasia = CA

I'm not sure what I thought six years ago when we sat in the office of Dr. Nurko at Boston Children's hospital. I remember him telling me, "Well, she's doing really well right now..." and we discussed plan of care.

About a year ago I noticed that Angela was having more episodes of food getting stuck in her esophagus, and just some subtle changes to how she was swallowing. Things like tucking her chin, which I knew she was doing to protect her airway. I started getting my mind prepared for the fact we would need to head back to Boston soon.

Then in April Angela had a very bad case of aspiration pneumonia. Actually her lungs didn't look too horrible on x-ray but she was having a tough time managing her airway. She had to be on oxygen for several days and her blood pressure kept tanking. Getting to Boston was discussed, but the doctors at St. Paul Childrens Hospital had never seen a patient with CA before. Gee, surprised surprise! NOT! Nobody has seen it. There are currently only three kids in the entire USA right now who are living with CA.  Angela is the oldest. Two are treated by Dr. Nurko in Boston. There was another person with DS who had the disease, but at the time we saw Nurko 6 years ago she had already passed away from complications of the disease. If I remember correctly she was 14 or 15 years old.

Let me tell you a tiny bit about CA.

There are three types:
1): acquired CA: Usually happens to elderly stroke victims and is not progressive. Most people with acquired CA die from complications from either the stroke that caused it or aspiration pneumonia. Acquired CA is not progressive.

B: congenital CA: It is not uncommon for newborns to have CA. It is not progressive, but the newborns need to have a myotomy (cut) in the cricoid muscle so they can swallow safely.

C: CA of unknown etiology. There is no known cause, and it is a progressive disease process. It is EXTREMELY RARE. It is NOT related to Esophageal Achalasia which is significantly more common. Again, it is a progressive disease.  This is where the last two paragraphs of that other post become important.

Now back to Angela's pneumonia back in April. She had one really bad bout and got over it. Summer marched on and we put it behind us. In the meantime I started working on getting Angela back out to Boston. One round of aspiration pneumonia in a person with Down syndrome isn't completely shocking. It happens and you move on.

On the August 30th Angela started coughing, which is not unusual for her. By morning her cough had changed a tiny bit. Around noon there was a shift. Her cough was sounding wet. I called the pediatrician's office who said they could get her in at 3:00. At 1:00 I put her in the car and headed for the peds office anyway. Its only a few minutes away. On the way there she said her chest hurt, and thats my indicator that we're headed for trouble. Her chest hurts because of how she's breathing. As always they put us right into a room and took her blood pressure right away. She was low, but not so bad that that she was going to crash on us. We did a chest xray and the tech showed it to me. Oh man...yuck...her lower right lobe was a mess. The doctor got all Angela's paperwork ready for me when I said, "Nope. I want her transported this time. Last time she tanked on me in the parking lot." Looking at how Angela was in that moment the doctor thought transport was a bit overkill but followed my lead anyway. Two young male paramedics walked in and Angela declared, "Oh, you're smok'in hot! I'm riding with you guys!" The paremedics seemed a bit confused that this very with it young lady was going to ambulance. I was following the ambulance when we came to a yellow light about four miles from the hospital. The ambulance made it through, but I did not. As the cross traffic started to move in front of me, the ambulance turned on its lights and sirens. CRAP! CRAP CRAP!!
I got to the hospital just a couple minutes after them. Angela's blood pressure had bottomed out in the ambulance.

Ok...that's about enough for this post, huh? I'll continue with another post so you can rest your weary eyes.

Are you aware?

October is a big month in our house. It is Down Syndrome Awareness month as well as Breast Cancer Awareness month.

Tell me, are you AWARE of Down syndrome? If you're reading here, I'm sure that you are. Enough of awareness, what we need is acceptance. Your acceptance tip for today is this: Accept that when you say, "I just hope it's healthy" that having Down syndrome doesn't make a baby unhealthy. It makes them just one chromosome different than you.

Now lets talk about breast cancer awareness. Do you know it exists? I'm pretty sure you have to be living under a rock if you don't. I see all the "secret" memes go around social media, "I like to hang mine on the back of a chair." which is supposed to somehow raise your knowledge about breast cancer. How does wearing a pink ribbon on my lapel increase your knowledge? It doesn't. So I am going to go out on a huge limb here and talk to you about the realities of breast cancer. Here is my real life breast cancer experience from today:

I was by myself (gasp!) in a new, local sandwich shop; a bit on the upscale side because I was giving myself a little treat. There were a lot of local moms there, all dressed in their labels and high price tags. I wanted to stick out my tongue and say, "You know in ten years you're going to be sorry you wore those shoes." and then kind of wanted to hide in my Gloria Vanderbilt stretch denim jeans and a top that suddenly felt like a gunny sack. It was in that moment that I decided I might like to give Stitch Fix a try.

I sat down at my computer and scrolled over the informational parts of the website. I entered my name, email address, etc. Then it was time for the style profile.

Date of Birth
Height
Weight
Bra Size

BRA SIZE????

This is where you should hear the sound of a record player needle scratching to a stop on your favorite vinyl album.

There is no place to select, "I have no boobs".

There is also no place to enter, "I have tissue expanders that feel like cement blocks. I'm pretty sure they are size 34FF."

If by chance I could wear a bra, if I wanted to wear a bra, I can't even guess at it's size. I have rolls and creases, bulges and scars in places they shouldn't be, making wearing a bra impossible until after my next surgery.

So there you go. The next time you get to fill in the little box that says, "Bra size" you can count your blessings. Someday, when its a bit more removed, I may post a picture of what my chest looked like at various stages of the reconstruction process. Now THAT would be awareness!

Hi!

Do you still check here? Do you wonder if I will ever write again? Believe me, sometimes I wonder the same. Life has been beyond busy for us the past 3-4 months. Trying to sell the house, surgeries and hospital stays for kids, and trying to sell the house. The summer was one big non- event as we did nothing but load the kids and dogs into the van, over and over again, to vacate the house for showings and open houses. We have just one more week and if it's not sold we're taking it off the market for the winter.

Here's a little Audrey video. I have updates on all the kids in draft that I will try to complete and get posted!

School clothes

I don't know why it is, but Angela only likes boy clothes. Unfortunately for her boy jeans don't come with room in the hips and seat that she needs. But shirts? Forget pretty girl shirts. No, this girl wants boy rugby shirts (its all about the stripes) and is usually found wearing Axel or Abel's t-shirts instead of taking one from the stack of t-shirts on her own shelf. And baseball caps. ugh! They do a number on her hair, that's for sure. It never fails that I'm rounding up everyone to leave the house when Angela comes around the corner with a baseball cap on that 1) I'm not going to get her to leave behind and 2) If I do get her to take it off her hair is a rats nest underneath with a serious case of hat head that I swear happens just seconds after donning said hat.

Another thing about Angela is she never ever ever ever ever ever ever stops talking. She even talks in her sleep. Non-stop talking, which is her form of verbal stimming, combined with looking through the Lands End catalog that just arrived could seriously drive me to drink something besides hard apple cider.

This is happening now, as I type: (grammatical errors made to match Angela's speech)

3:09 "Mom, I want this shark shirt. Its cool. And this blue shorts. Ok?"
 (walks back to island with the catalog)

3:11 "And this shirt with stripes. Oh yeah! I need this backpack. Great idea! My favorite. I get two backpacks. Yes two. I get one backpack for me. Only one.
(Back to island)

3:12 pointing to shirts "I need hockey. And basketball. I get hockey Or basketball. I get hockey....basketball...hmmm...what should I get? I love basketball. I love hockey. Or soccer! I love soccer mom! Mom guess what? I can do soccer, hockey and basketball. I choose? Hmmm I choose...I choose floor hockey. And one backpack. Yeah, I love basketball backpacks. With soccer ball in it.

3:17 Mom. Mom. Guess what!  I choose this one. Basketball. I'm showing you. Look. See? I choose basketball backpack. YES!!!! I'm getting it. I love basketball. Basketball it is. Hey Christina! (I have no idea who Christina is but she is apparently in the same room as us) I'm getting a basketball. backpack with striped shirt. Yes. Yes I know. Its so cool right Christina? Mom, Christina wants a hockey backpack. Yay!! Christina! You getting one too!

The Dog Park

There is a really neat dog park near us. 25 acres of dense woods with groomed walking trails, a large open field for playing a good game of fetch, and lots of waste stations to make any necessary deposits. A few years ago Dean and I would take the dogs to the park almost every morning. The dogs loved the park. I am not ashamed to brag a bit, and say our dogs were always among the most well behaved dogs there. I don't remember when we stopped going to the park, or why, but we did. At some point it was no longer part of our daily routine. I feel a bit guilty for that.

Tonight I decided to take Dudley back to the park he loved so much. He's 10 years old now. A gentleman. As we walked in among all the other dogs greeting this new guy, he walked right past them. Not about to be impolite, he let them sniff as he walked by. But Dudley was with his mom, and his mom was walking. Although a tear silently running down her face, she was walking.

Dudley remembered the park. I could feel him remembering places as he sniffed here and there. Only twice did he leave his mark because mostly he was intent on being by my side. Occasionally someone would meet us on the trail, their dog running ahead to say hello to Dudley, but he just kept walking. My super-social dog ignored the other dogs, and the other people, never giving anyone a second look except for one handsome young couple, the young man in particular. There was something about him that Dudley recognized or was alerting to. "Funny." I said. "He hasn't said hello to anyone here tonight, but he is intent on greeting you."

"Oh, probably because I have treats!" the young man said.

I watched my boy. I listened to his silent thoughts.

"No. He didn't indicate you have treats, and he doesn't care about them. He's trying to tell you something you probably don't know yet. If there is something you need confirmation about, he just gave it to you."

I wanted to say, "Maybe you have cancer! He told me I did. He loved me through it. Maybe you just made a big decision and he's telling you its ok. Maybe you have a baby on the way and he's telling you now. Maybe...."

But the young couple probably already thought I was nuts so I held my tongue and left them to wonder about the crazy lady with the tears in her eyes.

And we kept walking.

We were only half way around the park when I noticed Dudley had slowed down quite a bit. Already tired. Even though I had released him when we entered the park he still stayed in perfect heel position, his big furry, bear-like feet matching steps with mine. I slowed my steps, savoring our time together.

When we made it back to the gate I broke the rules, letting Dudley through the double fence off-leash. He never left my side as we walked to the van, waiting patiently for me to open the door before hopping in.

And then Dudley did a very odd thing. As we pulled out of the parking lot he turned backward in the seat, watching the dog park as we drove away. With tears streaming down my face, I watched him in the mirror. Dudley stayed there the entire drive home. Watching the world behind him, as if to get one last look. I have no doubt that he knows tomorrow is goodbye forever. 

Tomorrow is Goodbye

Tomorrow is goodbye and I'm having a very rough time with it.

Tomorrow we will say goodbye to our dear companion Dudley. How wrong it feels to schedule an appointment for such a thing.

Two and a half months ago Dudley was diagnosed with hemangiosarcoma of the spleen. At the time the vet said he had only a couple of weeks left, only two days later he rebounded. Now he is running around here like nothing is wrong, acting perfectly fine. Not acting sick. He does have a day here and there where he seems to be going downhill, only to bounc back; a classic progression of the disease.

But Dudley is of Golden Retriever blood, and they are super stoic dogs. Like his mom before him, Dudley won't admit that he is sick and will just keep going and going like all is well in his world. Until I leave. Dudley is my caretaker. He stayed by my side through many things over the years. He alerted us to Angela's seizures and to Audrey falling out of her bed. He loved Axel through his days in the halo. To keep him out of mischief we used to kennel him whenever we left. Then one day, a few years ago, he chewed, pushed and clawed his way out of a heavy metal wire crate. We bought a new one and he did it again. We thought he had developed separation anxiety, but, looking back, I think Dudley knew I was sick before I did. His anxiety started about the same time cancer started growing in me. Dudley stayed by my side through chemo, and one day was licking my bad head as if to say, "Its ok Mom. It will come back. I would share mine with you if I could."

About the same time Dudley was diagnosed with cancer, there was a mysterious problem in our house and we couldn't figure out which of the dogs was doing it. Whenever we would leave either Dudley or Zuri was peeing on the kids beds. Never ours, only the kids. We just closed the bedroom doors and that solved the problem. Unfortunately there were times we forgot to close the doors, which meant spending money on a new mattress. Again. A couple weeks ago we noticed Dudley's anxiety as I'm getting ready to leave is through the roof. He does not like to be alone anymore. He wants to be by my side every moment of every day. And I love having him by my side, it just does not work when I'm going to the store or other errands.  A few weeks ago I told him we were moving, and that its ok to let go if he didn't want to go with us to the new house.

Then, on the 4th of July we came home after fireworks to find Dudley had tried to chew through one of the brand new bedroom doors in his attempt to get to the bed. He didn't just chew through the door, but also the frame and trim. And then, at some point, he found the basement door open and a bed there. Only when we discovered it we also discovered that he was peeing blood.

It is time.

My poor Dudley.  So gentle. So patient. So soft. When I look in your eyes I see a person there. A person who understands everything there is about me. I love you buddy, so very very much. I know you don't like feeling afraid or worried when I'm away. I want you by my side for always and forever. But your mom Rubee is waiting for you.  Can you hear her? Can you already see her, with her slow, low, tail wag, waiting to play with her son again?

How will we stand the wait?

We did it! Today we signed a purchase agreement on our new home! Of course, it is contingent on the sale of our current home, but still. OMG I'm so excited!!!

I had to stand at an angle from the house because of the sun, so the picture does not do it justice. As you can see it is currently under construction. It is due to be completed the end of July. We set a closing date for mid August but can move it should we need to according to the sale of our current house. I just want to be in before school starts. The kids who understand are very excited! We've been talking about "the new house" for several weeks and I'm pretty sure by now they think we're a bit cray cray. We have the access code for the house so sometime this week we'll take the kids over for their first look around. 

Where did the time go?

A couple years ago I had a dream. One of those very vivid dreams when you wake up and can't believe it wasn't real. In my dream I was holding my son Noah in my lap. He was a toddler, wearing my favorite outfit I loved dressing him in at the time. I could smell his hair, feel his weight in my lap, feel his tiny hand on my face. I woke from the dream sobbing tears of anguish. I wanted the time back. I wanted my baby boy back in my lap where I could hold him and keep him safe. I worried this dream was some warning or premonition that something terrible had or was going to happen. I sat at the dining room table and closed my eyes and I could still feel all of it. It was several days before the sensation was gone.

Last night I had the same dream, only this time it was about Angela. I could feel her fuzzy hair on my cheek, her hand on my ear, pinching the lobe as she liked to do. My heart ached to go back in time. When I awoke I realized the purpose of the dream. It reminded me to cherish the times I have with my children.

...to pay attention to the little things.

...the feel of them in my lap.

...their hands on my face.

...the light in their eyes.

...the sound of their laughter.

Next week Angela, my biological baby, will graduate from high school. Some of you have been reading here since the beginning. For 10 years I've been telling you the story of Angela's life. I look back at it all...the good, the bad, the difficult, the tears, the triumphs, the smiles, and I am happy.

I can't say I'm sad to see Angela's high school years come to an end. I no longer have to fight for her to be included. I no longer have to worry if people are nice to her in school. There have been many wonderful things about high school too, and Angela really liked it there. That's the most important part, right? That she liked it?

My darling daughter. My tomboy princess. Thank you for teaching me so much over the past 19 years.

Pt 4: Celebrating our family

 Please join us in welcoming Amos to our family! 

 "Amos" (not his real name) is 10 years old and, like our other kids at home, he has Down syndrome.

So now we have triplets. .Ten year old triplets who could not be more different from one another.

We love you Amos! We can't wait to show you to the world!

(Since I know there will be plenty of questions, let me just say I will not be posting details about his first adoptive family, or why he was placed with us. When the adoption is final we'll be able to post full pictures of him and use his real name. Since I know it will be asked at some point, and the haters are still gonna hate, I will just say that yes, I can still go anywhere by myself with all the kids. :-)

Sometimes it doesn't work Pt 3

There are lots of big secrets in the adoption community. The first is that adoption can be hard. Really hard. The easy part of the adoption is the adoption process itself. If you are in the middle of your first adoption process and kind of stressed out about it, be prepared. This is like early labor pains.

In my second post in this series I talked about another big secret: adoption dissolution.  It is a difficult concept for some people to understand. A few people commented on my Facebook wall that they used to be the people who were horrified that someone would dissolve their adoption, giving the child away to someone else. Then they themselves adopted a child who wasn't easy, and they now consider themselves enlightened.

Let me talk about the child for a bit, since he or she is at the center of it all. Let us never forget that no mater what, the child is always the victim in the case of adoption dissolution. The child, no matter how socially, emotionally or psychologically messed up, is nothing more than a product of the crap circumstances he or she was forced to endure. Chronic abuse, starvation, numerous rejections and neglect of all kinds before being adopted can and will do a number on a child's mind, body and spirit. Behaviors that are learned and ingrained in the child can destroy a family. The behaviors can fall into the category of "very annoying" and not harmful, or they can put the adopted child or other kids in the house at risk. The child cannot help it, and healing can take years, or decades. Sometimes... Sometimes healing never happens. Unfortunately there are some things about a child you cannot know until they are already in your home. Even-so It is up to the adoptive parent to assure the child's needs are met, no matter what. No matter what kind of behavior is displayed, no matter how much the child gets on your nerves, and even when that behavior puts other children in the house at risk. If the adoptive parent chooses to dissolve the adoption, it is parent's responsibility to know where that child is going and with whom. To make sure all legal processes are followed according to state rules and regulations.

So the family chooses to dissolve the adoption, how do they do it? It can happen many different ways, using county placement services, foster care, or private placement. I don't know which, if any, is more common. Personally I hear the most about private placement using a private agency or adoption attorney. Several states now have laws in effect that require Social Services to be involved in a situation where a child is placed with a non-relative. In many states homestudies and background checks must be done as with any adoption and ICPC regulations for each state must be followed.

There is one more secret I want to tell you about.

In the case of private placement, in an effort to protect the first adoptive family from judgement and ridicule, the second family often goes through the adoption process very quietly. There is no big announcement of "Meet our new child!", and any celebrating is done only with those close to the new family. And that, my friends is the purpose of my dragging you through three blog posts. Don't get me wrong, I don't like dissolution, but I understand there is a time and place for it. I also understand that every child deserves to be celebrated. Every parent, whether adoptive or biological, deserves the right to celebrate the addition of a new family member, which brings me to part 4. I promise, its the last one!

Sometimes it doesn't work Pt 2

For as long as we have been part of the adoption community - a year or so prior to our first adoption - we have known there was a need for adoptive families to access respite care for their adopted child. The reasons are as varied as the children and parents themselves. Maybe the child never sleeps and the parents need a weekend to do nothing other than sleep. Maybe the child has very high medical needs and the parents need a few days to rest up and recharge without constantly responding to the next pump alarm, diaper blow out or tube feeding. Maybe they just need a few hours to reconnect with their spouse. Sometimes the situation is a bit more extreme; a family seeking counseling to get their feet back under them, or a family considering dissolution.

A few months ago Dean and I made the decision to open our home to adoptive families who need respite for whatever reason. Every parent, no matter how amazing, no matter how much patience and training they have, needs a break. . And its not even just the parents! Often the entire family needs a break! Unfortunately not all kids are cute and adorable, particularly if they are post institutional children. Some of these kids can be really difficult to find outside care for. I know, we know, because we have a child who cannot be left with just anyone. We have a child who may be amazing for us, but for anyone else - including school staff - immediately reverts to a feral state the moment we are out of sight. There is no such thing as getting a sitter for this child. And so Dean and I chose to become "those people" who aren't really phased by a kid who struggles to function while his or her parents get a much needed breather. We have also offered respite to families who are barely hanging on by a thread, who's marriages and/or families are falling apart around them. In these situations we request the family be seeking counseling services, being proactive in their attempts to keep their family together, while we are providing respite.

Adoption dissolution, sometimes referred to as disruption, is not a new phenomenon. It is not even rare. I think most people would be shocked to know just how often it happens, mostly because nobody talks about it. It is the deep, dark secret of the adoption community. Adoption dissolution is so common that every state in the US has attorneys who specialize in the process, who are specially trained in the laws of ICPC regulations (Interstate Compact on the Placement of Children). However, with the advent of social media, first with blogs, then Facebook and other ways to connect, people are hearing about adoption dissolution for the first time and are shocked this could be happening. Again, its not new. Maybe just new to you.

I think it is difficult for those who have never adopted, or who were lucky enough to adopt an "easy" child, to put themselves in the shoes of the adoptive family in crisis. If you have a biological child, think back those first few months. Maybe you had a really colicky baby and you were frazzled to no end. Now imagine doing that with a child who you have no connection to...or...gasp....who you may not even like. Maybe you had a baby who was super easy, and you looked at your friend with the colicky baby, saying to yourself, "Thank God that's not me!" Now, substitute "new baby" with adopted child.

As I mentioned above, adoption dissolution is the dirty secret of the adoption world. Why? Why the secret? Because of those who have no compassion for the failures of humans. I don't know of anyone who adopts a child and disrupts, who does not spend months in agony over the decision, tearing themselves apart about what they could have done differently, better, faster, or not at all. Some who regret the decision to adopt in the first place. And of course, there is human pride. "I failed." There is much judgement that cannot be avoided. Some families move to other communities where the neighbors don't know a child is missing, some change churches, others just stop talking to anyone, leaving their biological children to answer the questions of others. If you can imagine a situation, it has probably happened.

But what happens next? Where does the child go? That child who wasn't bonding or was difficult to manage. The child one family could no longer care for?

That's the other secret... Part 3.

Sometimes it doesn't work Pt 1

Imagine walking through the city streets of Anywhere, USA when you encounter a group of homeless street children begging for food or money. You ask each of them their ages. There is a wide range, from three -15. You think of your home, your family, the empty seat at your table and the empty bed in the guest room. "I could do this" you think to yourself. You choose a child based on his age because that is really all you know.

 You go through the legal process to bring that child into your family. Everyone in the house is excited! Your children are excited about another sibling, maybe even to share a room with him or her. Your spouse is excited because there had been discussion about another baby but nobody was sure about going that direction. The new child is excited to have a family, with many hopes and dreams that will finally be satisfied by that word, "family".

And then the child comes home.

You discover it is hard to love a total stranger. It is hard to have a total stranger come into your home and just "know" how the house functions. This child, who has never had a family has spent his or her life fighting for every need and doesn't know how NOT to fight. Property destruction is a daily, sometimes hourly occurrence. Screaming, tantrums, aggression towards self and others, and the list goes on. Months go by and your biological children are unhappy because their peaceful lives have been turned upside down. They resent this new sibling. Your spouse had no idea this child was going to come with the issues he or she has and they are not getting resolved as quickly as everyone expected. Your friends adopted a child with similar needs and they are not still struggling months later! Surely you're doing something wrong? Surely there is some therapy or medication or...or....something that will help this all get better.

Finally the family reaches the point of crisis. The family unit is disintegrating. People are walking out, both kids and adults, because the stress has become too much and there is no help available. Nobody seems to understand how one child can cause such upheaval. In your head you know it is not the child causing the damage, but what is it? Is it an inability of the child to bond with the family? Is it the inability of the parent to bond with the child? Is it lack of experience? Training? Unrealistic expectations of adoption? Is there even an answer?   You feel like a failure. You have failed your children, your family, the adopted child who you promised a family who would love and adore him or her. Can you repair the damage done to each of the family members? You know the family needs counseling but where do you seek such counseling? You reach out for help even through fear of being judged; even though people will say you didn't try hard enough. Long enough. You didn't act fast enough.

You reach out.

Little Girl at the Piano

Four years ago, my friend Hope Anne and I became very close phone friends as she prepared to travel to Ukraine to adopt her new daughter Katya. Let me tell you a bit about Katya.

Katya was born in Ukraine with a skull that was badly misshapen and in need of surgical reconstruction, not only for cosmetic reasons, but because her brain did not have room to grow. This early fusion of her skull plates caused Katya to suffer chronic, migraine level headaches. Luckily for Katya, she was living in a Ukrainian orphanage where she was severely neglected and malnourished. Since she wasn't growing neither was her brain. Luckily for Katya, she wasn't having headaches yet. Well at least not that anyone knew.

Because Katya was severely neglected and malnourished, and because the orphanage staff didn't actually talk to her, Katya never developed language. She didn't have the ability to tell anyone if her head hurt or not.

Luckily for Katya, she didn't really need language. Not only was she severely neglected and malnourished, but when she was adopted at the age of six, there was no such thing as "school" for her. She had never had even a tiny bit of exposure to anything educational. Katya had never seen a crayon, held a pen or pencil, or been handed a book. 

Because she was severely malnourished and neglected, Katya was often the victim of assaults by the other orphan children who, though malnourished themselves, were much bigger than her. Survival of the fittest is something children who live in orphanages know well, and Katya was anything but fit. 

Katya lived in a primal fight or flight mode. Without language her only way to communicate was through screaming, scratching, hitting or kicking. She wasn't a pleasant child to be around and the caregivers frequently bullied her for no reason other than to release their frustrations. Never loved and certainly never cared for, when her family arrived to adopt her Katya had no idea how to sit in a person's lap, much less accept love and affection.

Katya was a feral child. 

Katya screamed, and screamed and screamed some more. She kicked, scratched, choked and bit. Katya fought for her life. She fought the family who promised to love her and care for her no matter what. Like a wild animal confined to a cage for years on end, Katya paced back and forth in her new home. Home one year when I first met her, Katya was still pacing. She was still screaming. She was still learning what it meant to be loved. She was still learning to feel love, and she was afraid of it.

I want you to understand the sacrifices an adoptive family makes when they choose to love a child like Katya, because I can tell you from experience, this is not a "love at first sight" type of adoption. When a family adopts a feral child, the family has to choose to love the child. They choose to accept scratches instead of hugs. They choose to confine themselves to home for weeks on end, all for the child who has never had exposure to the outside world and isn't yet ready to experience it. They to choose to listen to hours and hours of screaming, keening, and crying. The family chooses to watch their home be destroyed item by item as the child learns to function in the world. The family chooses to put the value of a child above the value of possessions, vacations, popularity or community status.

I want you to understand that a family adopts a feral child because they understand the child has value even when nobody else can see it. Even when the rest of society asks, "But why is this my responsibility?"

But as much as I want you to understand, I want you to see. Something so simple. Something so pure and innocent as a little girl having her very first piano recital at 10 years old. Four years of love and sacrifice. It is only a few short notes. Turn the volume up on your speakers and you may hear a tiny, shaky voice trying to sing along with those few short notes. Remember that these few short notes are possible because of all the sacrifices made by one family. But my favorite part of all the smile of pride as she runs back to her seat. 

Pride. Sacrifice. Joy. Patience. Acceptance. Choice. Love. Katya.

If you would like to read more about Katya and her family, her mom Hope Anne blogs at Welcome Home Katya.

The Big Switch…take two!

When we brought Abel home two years ago, we had all the boys in the second bedroom and Angela was still in the basement bedroom. Some of you have been reading here a long time and remember that as the Pirate Room. Unfortunately I wasn't happy with where everyone was and  "The Big Switch" happened, and everyone moved to different rooms! When we brought Audrey home last year it was very easy to move her into Angela's room. Because we use the Ikea Kura beds, we had only to flip the bed over to make it into a bunk bed. Easy peasy! Eventually Dean and I even got used to sleeping in a queen bed in the very small bedroom. Ok, maybe not the small bedroom part.

But then a couple weeks ago we decided we need a different house for our family. We would like to be able to provide short term respite for adoptive families who need a break, plus the property where we live now just isn't working well for us as a family of 7. Plus we have Angela's graduation party coming up and I just wanted things cleaned up a bit.

And so "The Big Switch Back" has started! 

Getting the rooms cleaned out and moved around to put the house on the market, in addition to all the school activities for the kids, after school sports, doctors and therapy appointments means I have been one busy mom. While I've been doing that stuff, Dean, Tyler and Bryon have been working on the maintenance projects. Why is it these kinds of things don't seem to get done until you decide to sell your house? Or have a graduation party for your oldest daughter? And where does all this STUFF come from?

Apparently we are hoarders because tucked away into every corner of this house there is more crap than I ever could have imagined. A couple months ago I read the book, "Life Changing Magic of Tidying Up, the Japanese Art of Decluttering and Organizing". If you haven't read this book yet, I highly recommend it. The premise of the book is about only keeping things which bring you joy. It is not about what to get rid of, but about what to keep. When I read it the first time I got anxious thinking about all the stuff in my house that did not bring me joy and how I couldn't wait to get rid of it all. So, as I purge the house for moving I am following this method and only keeping things which are necessary and/or bring me joy.

How about you? Are you ready for a purge? Have you read the book or are you interested in it? 

Happy Mother's Day

Happy Mother's Day to all the moms reading!

There are probably some new readers here who have come from the Pioneer Press article about our family. Let me give you a little tour:

Some are curious about life juggling kids and cancer. You can read all posts related to breast Cancer by clicking on the Breast cancer label in the left sidebar.

If you're hete to learn about our adoptions, or the Serbian adoption process, you will want to move over to our adoption blog.

Thanks again for paying us a visit here. I hope you stay awhile! 

Decisions

Dean and I recently made a really big decision. Although I am very excited about the possibilities ahead of us, the work involved may cause me to have a nervous breakdown! If only I could put our lives on hold for the next month or two.

We're hoping to have the house on the market by June 1st. You know, in the midst of Angela's graduation week and all that goes with it. We need a different space but are not going far. We don't want to change any of the kids' schools. Although we haven't found a new house yet, I have absolutely fallen in love with one I think is perfect for us. I love the space, the lot, the location, the kitchen, the bedrooms….everything… It makes me giddy thinking about it. But we can't even make an offer on anything until June 1st. And, well there is this small problem with Dean's opinion of it. We'll see if its even still on the market at the end of the month.