Tuesday, November 27, 2012

World AIDS Day

December 1 is World AIDS Day.    I have an awesome friend who wanted to organize some posts to help educate and to show our support.  Of course, I want to be a part of this. But, as a mother of two children with HIV, there are so many things I want to say. Where do I even begin?

The questions I get asked the most are about how HIV affects our daily life and if we are afraid.  Usually the first question goes something like this, "What is it like having HIV positive kids?"

Well, first, they are just kids.  Kids who happen to have HIV.  Right now they are young.  So the ways in which our lives are affected is so minimal that we rarely even think about HIV. Twice a day they take medicine.  It takes all of 3 minutes to give both of them their medication.  Medication is portable so it doesn't keep us chained to the house.  With insurance most medications are extremely affordable and there are many programs that help those who can't afford medication.

The girls go to the doctor once every 3 months to check their viral load and see how they are doing in general.  We usually go out for a treat afterwards and use this as a chance to have some special girl time.

I am not naive.  As they get older things will get more complicated.  As teenagers they may rebel against taking medication.  They may be angry. Dating, which as a teen is already a daunting experience, will be more complicated.   There are bigger issues will come up as the years pass.

But the fact is that our girls would have gone through so many of these issues even if they had never been adopted.  And they would have dealt with them alone.  Now, they have a loving support system to help them through whatever trials may arise. We all have our battles in life.  We all deserve a shoulder to lean on. And there is no issue that is too big to work through.

Who knows what medical breakthroughs will arise in the coming decade?  There has been so much progress already, and with stories such as the Berlin patient, hope grows even more that we will eventually eradicate HIV and AIDS.

As for if we are afraid, the answer is simply "no."  Fear stems from ignorance.  Most people have not been educated about HIV since the1980s and, believe me, things have changed drastically.  Check out this video from Project Hopeful (which happens to be one of my favorite organizations on the planet.






Five minutes of research will remove the fear for anyone. Awareness is key. Fear has no place.

But the most important thing that I want people to know is that our girls are not HIV.  They are

Eva 


and Darcy





And they are beautiful, wonderful blessings. They are not a diagnosis. Look into those faces.  There is nothing to fear except the ignorance of others.  And, that is the TRUTH.




check out the other awesome posts HERE

Sunday, November 25, 2012

Eva's 9 months!

Yesterday marked Eva being home 9 months.  I didn't even realize right away, which says more than you would think.  With the other big milestones-one month, 3 months, 6 months-I was searching for progress, looking for signs that things were easier. I was obsessing over how attachment was going, if her behaviors were FAS (forever) or institutionalization (possibly changeable).  Every day there were several episodes of me analyzing and scrutinizing interactions and episodes.

Yesterday came and went without any such thoughts.  Eva has integrated into our family so well. Is it still a little different?  Sure.  knowing someone for 9 months (and 2 of those there wasn't much communication) is different than knowing someone for years.  But, she fits. She is our family.  We are moving forward together.

It has not been an easy 9 months.  There have been many shocks, struggles, stresses, and sorrows.  But I feel we have really turned a corner the last few weeks.  I admit a few times, I have thought, "What have we done?"  "I can't do this".  "I am not enough."  "I am overwhelmed beyond belief."

But now, there really is no doubt. I can do it. I am doing it. I am enough.  I am so thankful.

This is not to say it we won't still have hard times or bad days.  Or that I never get overwhelmed.  But, with her, it just feels like normal, "I have a big family and a lot going on and I need a break and a coffee and a nap and I wish someone would do my dishes and my laundery" overwhelmed.

At some point recently I realized I needed to not worry about Eva's behaviors being "fixable" or forever.  She is Eva.  She is our daughter.  I need to work on fixing myself.  My reaction to her behaviors.  My ideas about what should be and what normal is.  I always thought I didn't have any of those restrictive notions.   That I would be naturally totally accepting of just about anything (drawing the line at violence/abuse).  I mean, I have tattoos, I hopped freight trains. I used to shave my head.  I have been outside of typical society most of my life.   I am not normal myself, so surely I will just accept this child for whoever she happens to be.  no matter what.

But I was wrong.

I hate, hate, hate to admit that.  But I really struggled with some of the more atypical aspects of Eva. I grieved who I thought she would be. How I pictured her in our family.  How our relationship would be.  I was fighting reality and trying to fit her into this picture frame that never even existed.  The harder I fought, the harder it got. I was not accepting. I was denying. I didn't talk about it a lot because I didn't even realize I was doing. it. 

Don't get me wrong,  I was definitely bonding and we were making big progress, but I was dragging my heels in hard as I could. I was making everything harder for all of us.

 I realize all of that now. And I realize I need to work on fixing myself.  Because Eva is not broken, and, most importantly,  I don't want to break her.

Because I love her.  Just the way she is.


Tuesday, November 20, 2012

Post placement

Our post placement visit was tonight.  It went well. Again, I highly recommend Children of the World.  They are great in so many ways.  I love having a social worker who is not only a mom, but has adopted.  She didn't expect our house to be spotless and running like clockwork 5 weeks home.  She just wanted Darcy to be cared for, bonding, learning family skills, etc. In other words,the stuff that matters.

Now our last step for both adoptions will be readopting in America.  I called an attorney about that today.  Hopefully that will be done before the end of the year. 

Eva had a behavioral therapy appointment today.  It went well.  Still mostly getting to know each other and the things we need to work on with Eva. Eva filled one floor of the dollhouse just like last time, but the other floor she actually decorated.  And she played with some of the dolls this time. Major improvement in such a short period of time! 

We also bought Eva a potty training alarm.  She is really excited about it.  She wants to stop peeing in her pants.  And she doesn't want the pressure of telling us if she has an accident.  So, this removes that pressure while helping her potty learn.  We will see how it goes.  We are not worrying about night accidents and don't think we will for a long time to come.

Can't wait for the girls' first Thanksgiving on Thursday.  I have so very much to be thankful for this year!

Monday, November 19, 2012

Questions



Everyone has asked how the girls have responded to each other. I can't believe I haven't blogged about that!  The answer is they are thrilled to be back together.  They did remember each other very well.  When we were in Ukraine we showed Eva's picture to Darcy and Darcy would always smile and say the name they used to call her (which was her old last name-Suloyeva-note that it ends in Eva, part of the reason we chose it).

Of course, in the months between adoptions Eva was very aware that we were trying to go back for Darcy, while Darcy had no clue we were coming for her.  So I am sure D had sort of written E off. When kids left they did not come back.  I can't wait till she can speak to us more about what it was like realizing Eva would be her forever sister.

They both love to look at their pictures from Ukraine.  They really like that they both have such similar pictures-doing the same things in the same places.  They like to take their medicine together. They like to go to the doctor together.

The language barrier is still a bit hard for them. I imagine it is quite surreal to know each other for years and be able to speak,and then suddenly not be speaking the same language.  But, every day Darcy learns more.

Other than that things are going well.  We had a big doctor's appointment today that I had to take all 6 kids to.  Yikes.  They all did really well.  I was very proud of them.  The appointments have never been shorter than 3 hours, but this one was 2 hours.  And that is with them adding an u/s of her stomach.  Darcy's medical records from U said she had something wrong with her pancreas.  She doesn't, thankfully.

We will find out Friday if her viral load is suppressed now that she is home and on a more regulated dose of medicine.

The doctor is pushing for us to do a study about one of the meds she might switch to.  I have very mixed feelings about it. I am good with the medication.  Eva is on it.  But we don't yet have her viral load under control completely, and now we might try a dose of medication that is experimental?  I just don't know about that.  But at the same time, it wouldn't be much different and it could help other people. Still thinking on it.  Though my gut reaction is no.  We will see..

Our post placement visit is tomorrow so I will probably post then with another update!

Tuesday, November 13, 2012

One Month Home

Well, we have reached our first big milestone.  One month home.  It is so cliche, but really, in some ways it feels like we got home yesterday and in some ways like it all never happened.  Like Darcy has been with us forever.

I am thankful, honestly, to be ticking off this milestone.  I forgot how rough some things about the first weeks are.  We don't have issues with basic communication, but that is as far as it goes-the basics.  I know there is a personality in there that I get glimpses of, but don't know in depth. I want to have a real conversation with Darcy.  And language is harder for Darcy than it was for Eva.  I think I have mentioned that Eva had no fear about learning English. Darcy is very resistant to it.  She understands so much, but she doesn't want to speak it.  She speaks to me Russian and I speak to her in English.  Eva, on the other hand, was a parrot at this point. She never cared if she said it right or not. Darcy is self conscious about it.  She wants to be good at it from word one.  She reminds me of her oldest brother so much in that regard. 

Attachment seems to be going really well.  I have nicknamed her "Velcro" because she is pretty much literally attached to me at all times.  I am glad it is going well because we were a bit worried she would be one to indiscriminately attach to people.  She clearly has a preference for me over other people. Though it is good that she wants to be with me all the time, it is sometimes a bit overwhelming.  I was explaining to someone that even when you have a tiny newborn, when your spouse walks in the door, you need a little space and want to hand the baby off.  But she is a 5 year old. So sometimes I just want some alone time.  With Eva I waited far too long to realize I need some "me" time to be a better mother.  I am trying to be here for Darcy almost all the time, while still retaining my sanity.

She asks about 20 times a day where Daddy is and when he is coming home. She doesn't like for him not to be here.

Someone that met Darcy right after she moved into the older child groupa at the orphanage described her as very clingy with the nannies.  She said she just held their hands and hid behind their legs.  She wouldn't play with the other kids. When I got there she was all over the place just like any other child.  So, this seems to be her way of figuring out her surroundings and who she can count on to keep her safe.

She did move into the girls' bedroom this week.  She was hesitant earlier because she wanted to be in my bed, but she became very excited about it out of the blue this week.  She has been in there 2 nights and has done pretty well. 

The kids are all getting along well.  Darcy is hesitant to join in, but the other kids are trying to include her and when she does play they have fun. I think as language comes more interaction will come.

Overall, things are going surprisingly smoothly as far as adjustment for and to Darcy goes.   The hard part is mostly me. I am struggling a bit making the jump to 6 kids so quickly after making the jump to 5.  And I am coordinating doc appointments, post placement reports, and readoption, along with homeschool, house cleaning, preparing for the holidays, being a wife, and a mom.

My house is a mess most of the time. Dinner has been less than stellar.  I tried to skip school for a few weeks, but found we do better with the structure.  And Darcy wants to do school. She already knows her alphabet, numbers to 10,colors, many animals, and a few songs.  So school is actually helping right now.

I know these are things that take time. It usually takes me several months after having a child to get into a routine.  I just really wish it would happen sooner.  I am ready to feel a bit less unhinged.  One day at a time. One day at a time. This is my mantra. 

I need to just enjoy the bonding, the getting to know each other, and all the firsts that are so fun to watch.  I just wish my house was cleaner while I am enjoying it! 


Saturday, November 3, 2012

Americans are crazy

Coming home at the end of February was probably not so weird.  Coming home in mid October must feel like stepping into crazy land.  We are big Halloween people here at the Hogeland house. So we began decorating right after I got home.  Big Black spider webs, skeletons, Jack-O-lantern cut outs.

We took all the kids to Boo at the Zoo, which is a fun event that our kids go to every year.  It involves games, trick or treating, a spooky train ride, and lots of cool spooky things to look at. 

A few days later we took the kids trick or treating.  It was hilarious how fast Darcy caught on.  By the third house she was racing to the front door, yelling, "TRICK OR TREAT!!!".   Have I mentioned how much she loves chocolate?  Eva isn't a huge sweets person, but she loves dressing up.  They both really loved wearing their princess dresses (Darcy kept saying "kraisevaya youbka). 

Then two nights later we take them to the local Dia De Los Muertos festival to honor, celebrate, and remember the loved ones we have lost.  If you are unfamiliar you should totally google.  It is beautiful and meaningful and very different than what many Americans are used to. DDLM involves alters, lights, skeletons, beautifully painted skulls, dancing, food, music, friends,  tears, smiles, and fun.

I can't even imagine what it is like to come out of an orphanage and into this world.  She probably thinks we are crazy.

And, next up is Thanksgiving, followed closely by Christmas and New Years. We also have 3 birthdays in this season as well.  She is going to think we party all the time.  And then she is going to wonder why all the partying stopped!  Or, maybe, she will be happy it all settles down. 

It will be an awesome and fascinating holiday season for sure!  Can't wait to watch the newbies take it all in!