Monday, May 19, 2014

It's May again! {+a day in the life.}

Life has been crazy between school, appointments, hosting a huge rummage sale, and so much other stuff. There are some major changes happening soon in my life, trips to look forward too, classes to get done, etc. It seems non-stop.

But the thing is, there is something that is not changing no matter what is going on. Something that doesn't give me a break or wait until I have extra time. It doesn't care what I have going on, and is always reminding me that it's always there.

My health. Or lack there of. The nasty little buggers that I have living inside me. The Borrelia burgdorferi bacteria, aka Lyme disease. And many nasty co-infections that can be just as brutal as the Lyme itself.

May is Lyme Disease Awareness Month. I blogged about the basics of Lyme disease last year, you can find those posts here. This year, I want to focus on prevention, diagnosis, and awareness.

Prevention, so you don't get bitten in the first place. Diagnosis, so you know how to recognize the early signs and so you know what you have if you are already sick. And awareness, so you know how serious of an epidemic this is, and how much people with Lyme truly suffer from one tiny tick bite.

First, awareness, so you can understand why prevention and diagnosing are importing.

*Please understand that when I tell you about my illness, I am not looking for sympathy. I'm not asking you to send cards or feel bad for me. I'm not complaining or ranting. I simply want to you understand. And you probably will never be able to fully, unless you've lived it, so I will be honest and want to try and give you an idea of what it's really like.

Being chronically ill is TOUGH. Plain and simple. The exhaustion, the struggle to live your live, the pain, never ending pain... it's not fun. It's not a walk in the park. It's not take a certain medication and be better in a few weeks.

Here's a day in the life through my eyes. Right now, I am "herxing". The herxheimer reaction is a healing reaction that patients with Lyme experience. It is basically your body reacting to the toxins released by the dead bugs that are being killed during treatment. It's good in the long run, but it's brutal to go through, and it usually lasts from 2 days up to a week. Detoxing and cleansing your body is very important during herxing as your body needs help to get all the toxins out.

Anyways, all my symptoms have flared big time, and I am in a lot more pain than normal. Saturday morning as I started to wake up, I could literally feel the pain level go up the more I woke up. (Mom, this would be part of the reason why I don't like to wake up and always try to go back to sleep!)

My knees hurt so bad I could barely walk down the stairs, so I popped some ibuprofen to take the edge off before my friend Rachel and I took my siblings the park. (Trip planned around other things, wasn't an option to cancel.) I was grateful that there was a place I could sit as I was playing with the kids. And yes, some of us wore winter coats... that's Wisconsin for you!

Saturday afternoon, I tried to do school, but my brain fog was too bad and I couldn't remember anything I had just read, or concentrate enough to read it. So I gave up and read Facebook and crocheted instead. Except my wrists hurt enough that I had to keep taking breaks.

Saturday for dinner, we had take out pizza as a treat. As I'm on a STRICT diet, I didn't have any, and heated up some frozen Paleo crockpot veggie chicken instead. I took my handful of supper meds with it. But just the smell from the pizza made me sick to my stomach and gave me a awful headache.

Saturday night, I got a little bit of school done, and then decided it was late, I should take a bath, and then shower for church.

The water was way too hot as I got in due to my temperature sensitives. After I adjusted to it, I laid there for about 20 min and then I started overheating and sweating really bad (which is a miracle in itself as I NEVER used to sweat and it is important for detox). My head started throbbing, my heart started racing, and I got super dizzy. It's happened before but not until I've stood up after a bath. I let the water drain and just laid there, knowing I would pass out if I tried to get up.

Ten minutes later, I got out of the tub, but had to sit back down right outside the tub as it got really bad again. I took my pulse... it was 120-130, and normal resting for me is 85. So not good. I sat there for a half hour before I finally was able to stand up for 2 minutes to rinse off. Then I clutched the wall for the ten feet back to my room. I turned the fan on high, and grabbed some calming essential oils that I have by my bed for my heart. An hour later I finally fell asleep.

Sunday morning, I was weak, and still in pain, and almost didn't go to church. But I did, because that's what we do when we have a chronic illness. We press on, even when our bodies want to stop. We can fake a smile so well that no one has any clue about the pain that lies beneath. We choose to carry on with a pretty normal life, because the alternative is to be bedridden. We hide the pain because we have learned to be strong.

This Saturday was one of my bad days, but I usually have all the same symptoms I mentioned on a "good day", plus more, just not as severe. And with the exception of sitting on the bathroom floor, I'm used to it. I except them for what they are and usually don't think a lot of it. Because, right now, they are part of me, part of who I am. Lyme disease doesn't define me, but that doesn't change the fact it's in me and controls my life sometimes. I have to deal with that because I don't have a choice. I have to be strong, so I'm not crying and complaining all day. Whatever doesn't kill us makes us stronger, right?

Our lives STINK. Being in pain all the time is HARD. It's no fun, and often there's not even an end in sight, no matter how many years away.

THIS is why awareness is important. Not only do we need to prevent other people from having to go through this, but we need cures. Because this is existing, not living.

My body is broken. I don't want to live like this. I don't wan't others to have to live like this. And I don't want anyone who doesn't already live to this to have to experience it.

Awareness is important.

Sunday, April 20, 2014

The HOPE of Easter.

Today is Easter Sunday.
The few years, I've not really felt "the holiday spirit" for any holiday. I was happy to see other people enjoy it, but didn't really feel joyous myself. (To be fair, I haven't really celebrated Christmas like "normal" since 2011!)

Today was different. Because for the first time in a long time, I felt hope.

The HOPE of Easter.

The cloud of [health induced] depression I was in lifted. I was no longer stressed by orders, school, my health, the future.

Jesus reminded me what He did for me on the cross all those years ago.

He gave His life, not only to carry all the evil of the world on his shoulders, but for ME.

So I can be FREE! He gave His very life so that I can have life and have it to the full!

How do you repay someone who was killed in your place? You can't. So how do you even start to say thank you?

Surely not by living a life filled with depression, and hurt, and loneliness, and pain.

Instead I will live a life filled with love, happiness, joy, and HOPE!

The HOPE of Easter.

The HOPE of the new lives He has given us. The HOPE of knowing this life is not the end, because we, given we know Him, will live FOREVER with HIM!

My life has not changed because I feel hope today. I still am struggling with the same health problems. But, the difference is, I am not weighed down by my problems, but rather lifted up, and joyous, because I know the King of Kings, and the Lord of Lords. And He loves me enough that He died for me.

Do you have the HOPE of Easter today? Do you know the One who gives that HOPE?

I pray you do, and if not, that you would get to know the Hope-giver, and invite Him to be a part of your life. blessed Easter today celebrating the Resurrection of our Lord with your families!

With love, from my family to yours, HAPPY EASTER!

"Его здесь нет. Он воскрес, как сказал." (От Матфея 28:6)

"He is not here. He is RISEN, just as He said." (Matthew 28:6)

Monday, March 24, 2014

Celebrating World Down Syndrome Day!

I posted about WDSD, but Sunday night we celebrated with our local Down syndrome support group!

Go check out the pictures on my mom's blog! :)


Some things are too good for words. So I don't have many. The 4 most important are....
My sweet love. She has waited over 15 years. 15 years of being rejected, and today, she is CHOSEN.
The sweatshirt I was wearing when I met her 3 months ago says "Chosen Adopted Loved". Today she is chosen, soon she will be adopted, and even though she is already loved from afar, soon SHE will KNOW she is LOVED.
I met her just over 3 months ago, and it's been 3 months since I said goodbye to her. 3 months since I whispered in her and promised her I would make sure her mama found her.
Her mama found her, her mama loves her, and her mama is going to bring her HOME!
Praising God here today through my happy tears. In awe of how GOOD he is.

I kept my promise to Greta, and He also keeps his promises. God places the lonely in families; He sets the prisoners free and gives them joy!

Saturday, March 22, 2014

Time is still ticking.

We keep going about our lives.

Doing what we do. Trying to keep up with life.

But guess what? Time is still ticking.
The days are passing, and weeks are slipping away.

And with the passing weeks, the months start ticking by too.

Precious weeks, days, minutes. Wasted.

Months we can't loose.
Because she's not with her family.

And we are running out of time to find her a family.

How long must she wait?
She doesn't have much time before the clock hits zero.

And then it will be too late.

The tiny girl who needs a family. || Adopting the tiny girl - FAQ's

Friday, March 21, 2014

What today is really about.

Today is World Down Syndrome Day!

March 21st, or 3/21, standing for 3 of the 21st chromosome.

I have three siblings with Down syndrome, and many other little friends with Down syndrome, all who I love to pieces.

But here's the thing.

I'm not here to tell you about how special people with Down syndrome are, and why we should celebrate them today.

Because I don't think today is about celebrating them.

I think today is about making a point of pointing out to people that people with Down syndrome should be accepted like everyone else.

When I see one of my siblings or one of my other little friends with Down syndrome, I forget in the every day that they have Down syndrome.

When I look at Elijah, I see Elijah, not my-brother-with-Down-syndrome. It's part of who he is, not something that makes him different than everyone else.

Obviously, there are doctor appointments, therapies, and challenges that come up because of their diagnosis, but even then it doesn't scream Down syndrome at me.

I don't think it's much different than when I see someone with blonde hair. I notice it, but not every time I look at them, and it's not what I think about when I look at them.

I'm not trying to take away from the fact they have blonde hair by not pointing it out to them, and I'm not trying to take away the fact someone has Down syndrome by not pointing it out to them.

Today is about acceptance. Accepting people with special needs for who they are, and not treating them different than anyone else.

I'm not saying not to be more patient and understanding when they don't behave perfectly, and I know with some things you have to take their diagnosis into account.

But, you don't have to constantly thinking about the fact they have Down syndrome, and treating them like it.

When we are out and about, yes, I still notice if there is an adult across the restaurant who has Down syndrome. But do I need to to go over with one of my siblings and introduce myself? Absolutely not. Sure, I'll smile at them if they smile at me as they walk by, or I'll say thank you and smile at them if they hold the door open for me. But I won't do anything more than I would do anyone else. I don't introduce myself and my sibling with Down syndrome to point out they are both the same and different than everyone else.


If you see a woman who is a complete stranger with no hair, do you go up to them and tell them that your sister-in-law also had breast cancer? Or smile sympathetically at them and stare at their head? Why should it be any different with someone with Down syndrome?

Be patient, listen carefully if they try to talk to you, but don't act like they are different.

Because they are as different from people without Down syndrome as you are from me.

Do you the same face and body type as me? Nope, and they don't have the same one as you. You accept me for who I am, so accept them as who they are.

Happy World Down Syndrome Day!

Tuesday, March 4, 2014

Her 9th Birthday and 1st Celebrated

Today, my beautiful little sister turned 9.

Her first birthday with a family!

She waited over 8 long years, and now she is loved, and cherished, and knows what it means to be in a family.

And we are so grateful and blessed she is our ours!
Happy Birthday Grace!


We celebrated her birthday on Sunday with family and friends who love her.

She quite enjoyed licking the beater with frosting on it!

We decided to write her name in Ukrainian and Olena looks prettier than Grace. :)

9 cupcakes and candles! A 9 for this year, and one for each of the 8 birthdays she's missed!

We haven't had any birthdays since she came home, so she didn't get to see anyone else practice. But she still did pretty well and got at least one out! She was blowing, but very gently. :)

So Elijah helped her!

Of course she loved the cupcake!

Opening presents! Clothes are fun when you've never gotten any for your birthday before!

Signing "monkey" while reading her new Five Little Monkeys book!

A doll she can brush the hair on!

And another dolly she can brush the hair!

If you didn't get the memo, she loves to brush hair and can be found most days with a hair brush in her hand!

A beautiful handmade quilt for a beautiful girl!

Happy Birthday Princess Grace! We are so glad you get to celebrate with us!

Tuesday, January 28, 2014

Adopting the tiny girl - FAQ's

Follow up from my last post... go read it first if you haven't already!

One of the frequently asked questions I'm getting about "Greta" is about how she would do in a family with young children.

This is hard to answer, because I really don't know, but I'm going to try as it makes a difference to many people when considering her.

When another family met Greta over a year ago, she wasn't drugged as she is now. She was nicknamed "Koala Bear" as she would literally climb you for a hug. Constantly seeking affection, even if she was rough with the other kids to get it.

This video is of an adoptive mama playing with Grace, when Greta decides she wants attention too.

She wasn't like that when we met her. She hardly acknowledged us when we came into the room, as she is now drugged.

Someone who met her wrote an update for her (on her profile) from Sept 2012 that said: Greta desperately desires to be loved and shown affection. It broke our hearts to see how desperate she was for attention. She would climb up us before we even knew what was happening and was clinging to us. She probably needs to go to a family that can devote a lot of one on one attention to her, and that she be the youngest child, because she can get aggressive when she is jealous for attention. I hope this helps her find a family.”

It's impossible to know how she would do once she is home with her family, but I'm not sure she has to be the youngest.

Of course, a family where she was the youngest (or a family that had no young kids), would be the best, especially a family with previous experience with adoption and Down syndrome.

But I do think it's possible, even though it won't be easy, for a family with younger children to adopt her.

Yes, she was pretty aggressive when she wasn't being drugged, but the fact that she wasn't tied to a chair tells me that she wasn't like that all the time, and was only seeking affection when it was available. I feel like once she knows she is loved and safe, she will not seek attention as much.

She was very gentle with Grace and another little girl who was in the visiting room that day. As you can see in the video I shared in the first post, she was tickling Grace. She loved to hear her, laugh and would put my hand back on her tummy when I stopped tickling her. (When Greta is on top of Grace in the second clip, she was trying to tickle her, not hurt her.)

There was a little girl with severe hydrocephalus in playing with us and a missionary who was working with the kids. Both Greta and Grace would every so often go over and just rub her head gently, especially when she was crying. It was very sweet to see, and you could tell that Greta and Grace loved her.

Any family, with young children or not, will need to be able to have a lot of time to spend with her and love on her. (Which is not hard to do, by the way!) She needs to know that she is not just being moved to another orphanage, the concept of a family will be hard for her to understand.

At the same time I'm saying it would be possible, I will say it may not work for you. I would encourage you to be very careful when considering her when you have younger children. I'm not going to sugar coat, and am being very real here, even though I want her to have a family badly. Parenting her will not be easy. She is hurt and she is wounded, as anyone would be after living her life. Pray about it a lot, and feel free to ask me any specific questions or to get in contact with the others who have met her.

The other big question is about the process to adopt her. So here goes. :)

The requirements for a family to adopt from Greta's country are:
♥Married couples ONLY. No single parents.
♥No family size restrictions.
♥No upper age limit, but at least one parent must be 15 years older than child.
♥No diagnosed history of mental health conditions.
♥No criminal record.
♥Canadians can adopt from this country!

Her profile does say "Families with adoptive experience and a completed home study would be the best option for Miss Greta", but that is not required. She is running out of time, and a family would be better than no family at this point! You may want to find a homestudy agency and get verbal approval from your social work first before you commit, in case they won't approve you, and there is another family ready to commit.

I do want to say about the adoptive experience though, and I'm not going to sugar coat, that a family needs to understand what 15 years in an institution can do a for a child and be prepared to handle that. Greta has been severely neglected, and she will likely be emotionally scarred the rest of her life. It doesn't end with rainbows and cupcakes as soon as she gets home. It will be hard, and any family, no matter how much experience, will struggle adding her to their family.

The cost to adopt from her country is about $25,000 including travel. Traveling in the summer makes it a little more, in the winter, a little less. It also varies by region and a couple other factors.

Greta is a just a couple hundred dollars short of having a grant of $20,000. This money was raised and donated by many people who love her and want her to have a family. This money will be released to her family when they receive their travel date to go get her. 

A family would have to raise about $5,000 for stateside fees like homestudy, USCIS, paperwork, etc. A little bit might need to be raised to finish it up, but the MAJORITY of the in country process will be covered with her large grant. And there are MANY warriors, myself including, willing to help a family fundraise the rest of what is needed.

The traveling for Greta's country can be done several different ways.

The first day in country, you pick up her referral to say you want to adopt her in the capitol city. (With her country, you can not put a child on "hold" for a family until you pick up the referral.) Then you head down to region, and meet her and agree to adopting her. The paperwork is then started for a court date which will usually be about 3-4 weeks later. (You visit everyday during this time.) After court there is a mandatory 10 day waiting period for anyone to protest the adoption (which never happens). Then you pick up the court decree, get the new birth certificate, and wait for the passport, which will take about 3 days. You get to bust her out of the orphanage, and then back up to the capitol, where you have a medical to get her cleared to leave the country, and visit the US Embassy to get her visa. Then HOME! That is the *general* time frame, but it's international adoption, so nothing is set in stone!

Both parents have to be there to get her referral and for court, but only one parent needs to be there to finish up. One parent can stay the whole time, while the second goes home after court, or both parents can go home after court, and one parent come back after the 10 day wait. Some families are also now going over and getting the referral, come home, both going back for court, one coming home, and the other staying though the 10 day wait.

I would highly recommend if you are adopting Greta to for one parent to not finish up alone, but bring someone with. The extra hands once you get her out of the orphanage and on the way home will be worth it, and it might get ugly if she is going through drug withdrawls.

Starting the Process:
You meet all the requirements, are okay with the long travel, and want to make Greta part of your family. What next?

Email Debbie at and tell her that you are seriously inquiring about adopting Greta and ask how to get started on the paperwork! She will get you set up with the commitment paperwork (through RR), and a stateside helper to help with the paperwork. If you do not want to use RR's facilitators, contact me first (you will still need to go through RR to get her grant, but can still use different facilitators).

And also, not required, but I would honored if you emailed me with or without questions to let me know where you're at. forhisgloryhandiwork(at)gmail(dot)com. I want to be able to support you all the way! :)

Getting her out in time:
We know Greta ages out in November, but what I do want you to know is that the usually about 8 mo process to adopt from her country does not have to be complete by then.

In order for her not to age out without a family, a family must have their USCIS application into USCIS by her birthday in November.

That gives a family a family a lot more time, but also remember that she should have been adopted years ago, and every day is another she spends in an institution.

Hopefully this post answered most of your questions if you are considering her. Please email me with any other questions at forhisgloryhandiwork(at)gmail(dot)com. And keep SHARING about her!

My post about her has been sharing MANY times, and for that, I thank you! But, she doesn't have a family yet, and we need to keep sharing until she does!

Together, we WILL find her a family!!