Saturday, April 27, 2013

Standing with and for refugees

During the week of my steroid treatment I was loopy and a bit crazy (ask Jason) but the upside was that I was able to get off the couch for more than 5 minutes.  I took the opportunity to visit our friends from Congo  and catch up with Nyasoni on all that has happened since I have been sick.  We compared hospital stories since she had one surgery while I was sick and we laughed and prayed and shared.
 I have missed them and the girls were all to happy to join me in visiting them and heading to the World relief Office.
Granpda Lower Funeral 116
our friend Mahoro shows off his work attire for his new job...
I also had an awesome opportunity to partner with World Relief Chicago to help tell stories of the programs helping refugees resettle in the U.S. and the people making a new life here in Chicago.  I am excited that Hawa Images will be featured at their Mosaic of Service event in May at the Chicago Cultural Center and on some of their educational and publication materials.  Combining my passion for photography and refugee support is a blessing!!

Here are a few of my favorite shots...
these 3 siblings just arrived from the Congo a few weeks ago and they also speak Swahili!
This little girl is from Iraq and could not resist the dress up clothes for the silly photo booth
I was able to see the many talented teachers and students taking part in the English classes and job training programs
There are also great early childhood programs offered and this day was parent interaction day and I spent the morning learning about rain, singing silly songs, and doing crafts with these kids and their parents.
After school there is a youth program for school age children and this little boy and his brother from Nepal had fun showing off their counting skills
This guy loved to smile and asked me to take his picture. He also shared a worn piece of gum from his pocket with me.
watching musical chairs is hilarious
Learning English is challenging but the classrooms were filled with laughter
You can check out this blog post at Hawa Images for more information on refugees, stories from the folks I met, and volunteer opportunities at World Relief in Chicago. Join us!  See you there!

Monday, April 22, 2013

more adventures in HG

I love this picture of my oldest. And it seemed appropriate for us today.  We are hanging in. It has been a while folks.  Mostly because I am still struggling to get through each day and do not have much new to report.  I wish I could say things are drastically different but I am learning to appreciate small victories like going to Target or drinking more than a few ounces.  I ventured to church next door yesterday and sat in the back row with the girls and cried under my sunglasses through worship.  It was good to do something more "normal" but it is also hard because many friends ask "so, you are feeling better?" to which I want to break down and sob and reply "not really, I am so exhausted from being sick" but mostly I nodded and smiled and said "we are hanging in." And we are.
Overall, I am so much better mentally and a bit physically. Getting dizzy, blacking out, and falling down the stairs last night being an exception to the doing better part but it was a new adventure in HG for sure.  My back is wicked sore but I am ok and now have to ask for help on stairs (add to the list of things I cannot do myself).  The fluids are helping and not being dehydrated everyday helps with sanity more than I imagined  so while I have a love/hate with the catheter in my arm it is more love because I know from last time the craziness of dehydration.  I am going on my forth week of having the central line in and having home health care (the folder they gave us the first day they came also says hospice across the front which makes us laugh cuz that is how I felt for a while :).  I love my nurse Chris and Jason continues to be a rock star giving me my IV's and meds although he might be getting a little cocky about his mad nursing skills. And even Evy flushed my line this week with Nurse Papa teaching her!
The girls have been home with us and I love having them here although I could never do it without the amazing support from near and far we are getting from family and friends.  Right now I may be dry heaving in front of the TV but my girls are running amok at the park with a dear friend on this beautiful day.  The body of Christ is seriously amazing. My mom is awesome and has come out every week to help (even braving sleeping with Miss Evy kicking her in the back all night) and Bibi and Babu Engstrom treated the girls to a special week in Cedar Rapids spent living it up with their cousins. Sure beats last time around when Anni spent everyday under a mosquito net watching The Little Mermaid with me.  We could not do this without all the help and sacrifice from you all.  Thank you for everyone who has prayed, sent a card or package, emailed, brought food by, loved on the girls. We are grateful and blessed and even in a difficult time we are trying to embrace all that this means even if we are still counting down the days 'til it is over.
Hanging in,

Friday, April 5, 2013

so then there is this..

I am still couch surfing and can I just say watching daytime TV means I know way too much about fake celebrities and can I just say why must everything be about food? HELP! The girls are out with Joy and a friend enjoying the sunny day right now and our friends and family have been amazing; bringing meals by, buying us groceries, welcoming the girls, and checking in on us.  But there is not much news and I wish I could answer your text, FB, or email with "much better today" but I am not there yet.  And to be honest that still seems in the distance future. We are trying to just take things one day at a time.

I am 12 weeks tomorrow and so far we calculated that I have had 39 bags of fluids and round the clock zofran for weeks.  My IV's mean I do not get my crazy on because of dehydration even on the days I cannot keep anything down and for that I am so grateful.  I am still unable to eat much and cannot drink hardly at all which is crazy frustrating when your lips are dry and cracked and all you want is to drink something ( I fantasize about it)! I struggle with longing to be well while trying to trust that God will be with me in every moment of this no matter how long it lasts.  Scriptures have come alive to me in new ways as the desperation I feel overwhelms me. I need the promises of God more and more as I feel weaker.  Jason has been amazing and I honestly do not think I could serve that way he has served my crying puking self.

The home healthcare folk just delivered steroid injections that I will start tomorrow in my central line.  The home nurse will come to show us how to inject them.  I was thankful to get out of the house for my doctor's appointment yesterday to feel the sun and warm weather even if it meant puking in the car on the way there and home. I also sobbed again at the doctor's office when she was describing the options left; a feeding tube, continued PICC lines, or steroids.   I don't even like to take advil when I have a headache and I HATE being on all these horrible medications but yet I am grateful because without them I know I would be throwing up so much more. HG is difficult in many ways but for sure one of the biggest for me is trying to find some balance between preserving my sanity and health and doing what is best for the baby.  We had another ultrasound yesterday and I could barely look at the screen.  It is still so hard for me to feel any connection to this baby and that only furthers my emotional wreck of a self. Knowing that there is a baby growing inside me when I feel like I'm dying messes with you.  We decided because I have not seen much change over the last few weeks and I have lost over 5% of my body weight we will try the next step which is steroids   But I feel so uneasy about this all.  I worry it will not help and there is not much else we can try.  We decided that even a day of feeling better would be worth it at this point.  I started to cry when the doctor described the side effects of steroids including inability to sleep, weight gain, water retention, and my favourite: feelings of "rage." WHA?? But not eating for weeks and weeks makes you lose it too. So tomorrow I start the injections and pray that there is some relief and that God protects the baby and me from side effects.
I want to be out and about. I want to enjoy this sunshine I can see from the couch.  I want to be in your lives.
I want to be a mother to my girls.  I want to make them lunch, walk to the park with them, and nag them to clean their room.  I want Jason to be my husband and lover again not just my care taker.  I want to look forward to meeting this baby.  I want to fell better and be healthier. Even a little so we try this next step even though it is a decision made with a lot of tears and prayers.
My sis-in-law sent me a quote from a talk on suffering and it resonates with me today, "I embrace anything God has for me.  I reject anyway the enemy tries to use it."  One day this will all be a memory and although I long for that day I am praying for the faith to trust to embrace today.
So there is that.