Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts

Wednesday, April 8, 2015

Hope into Action: A Story of International Adoption ~ a guest post

Hello readers! Today it's a special Q & A here on the blog with my good friend Michelle, who so graciously agreed to share her family's story of international adoption. Enjoy!

My friend Sue asked me to be a guest blogger about our family’s adoption journeys. I am honored and excited to share the amazing blessing that adoption has been for us. Before we get to the Q & A, let me give you some background on our family. My husband Tim and I are teenage sweethearts and have been married for 25 years. Wow, that makes me feel old! Anyway, until a few years ago we had three biological sons and all was good. We made God and church the priority for our family. We lived in the suburbs of Chicago in a comfortable home. Tim worked full time while I worked part time. The kids had kid activities. Generally, we were an average family with typical challenges. We had a happy, comfortable life. Then four years ago we embarked on our journey to adopt a daughter from Ethiopia. A few months ago, we again boarded the coaster of adoption. This time we’re adopting a son from China.





 
Q: After having three children, why did you choose adoption?
A: The short answer is that God wanted us to care for children that did not have a family. The long answer is that our church is committed to living out what God teaches, and that is to care for his orphans. There were several families that had adopted or were in the adoption process. Seeing them reach out to children from hard places, bring them into their families and love them was like seeing Jesus at work. It was clear to us through a series of events that we were to do the same. So we set aside our comfortable status quo and dove into unchartered waters to make a difference that would have a lasting impact on the life of a child. What we have since discovered is that our live has been immeasurably blessed by our daughter.

Q: Why international adoption?
A: There are kids on every continent and in every nation that need a family. There are nearly as many opinions about adoption as there are children that need a family. Alright, I might be exaggerating a little, but it is very real that people have very strong opinions about adoption. I don’t think there is any one, right answer for every family.

We chose international adoption for several reasons. Programs that support orphans in the U.S. are more common and capable than those in other nations. Although being an orphan is always a tragedy that no child should ever experience, an orphan in the U.S. is more likely to receive care than orphans in other nations. Also, after reviewing many profiles of U.S.-based children each had specific guidance that did not fit our family structure. In several cases the child was recommended to be the only child or the youngest child in a family. That did not work for us. In the case of our in-process adoption from China, a primary reason for international adoption was that our soon-to-be son simply captured my heart when I saw his picture on the waiting-child list.

Q: How did family and friends react to your decision to adopt? What did you say to naysayers if there were any?
A: Each time our children’s responses reflected their personalities. The first time we heard comments like: Will she like it in our family? Will she be able to make friends when she gets here? Can we afford this? Will you love her the same way you love us? This time around the comments are different because our son will be older when he comes home and he will not speak English. Instead, there is uncertainty about having a brother, who is a stranger, in our home and being unable to communicate with him.

Our extended family initially was very surprised because we had never talked about adopting and our final decision was made quickly. It was only a few weeks between first floating the idea and making the final decision. This is also true of our current adoption. In general, naysayers just don’t say anything. Maybe they remember their mothers teaching them, “if you don’t have anything nice to say, don’t say anything at all.” There were some in our inner-circle that played “devil’s advocate” to ensure we had thought through all the ups and downs, but once we made our decision, even they were very supportive.

Q: Can you describe the adoption process?
A: The adoption process varies greatly depending on whether it is a domestic or international adoption, and if international, the chosen country. Our experience is international adoption of an unknown child from Ethiopia, and a now a known child from China. When the child is unknown the family does paperwork, waits to be matched with a child, then travels to meet the child and bring her home. When the child is chosen from a waiting child list, the family has selected a child, does paperwork, then travels to meet the child and bring him home.

Of course, this is a vast oversimplification of the adoption process! There is a lot of paperwork, waiting, more paperwork and more waiting all the while feeling somewhat in the dark about the next step. The adoption agency is essential to navigating through the process. More information about the process can be found at most agency websites. To see more detail visit Children’s House International. You can also view the Asia Waiting Children listings while you are there.

In addition to paperwork, financial obligations are required to be met throughout the process. Adoption costs include a home study, domestic and foreign government fees, orphanage fees, travel, training, and more. There are definitely some misconceptions about the cost of adoption so anyone considering adoption should get the facts from agency websites. We funded our first adoption from savings. This time we are fundraising to offset some of the expenses. We estimate the total cost to be about $32,000 and our fundraising goal is $20,000. We have had many generous supporters leaving some amazingly encouraging messages at our fundraising site. See what they have had to say at our site, Ciochon Family Adoption From China.

Q: What adoption challenges did you experience or are you experiencing?
A: As with any worthwhile undertaking there are challenges both big and small. One of the challenges with adoption that I believe is less tangible is the underlying sense of being in limbo from start to finish. Until that child is home, there is so much uncertainty and waiting that an unsettled cloud hovers over everything. It’s like partially holding your breath for months on end all the while being uncertain when you can breathe deeply and freely again.

Each day comes with questions such as: When will that paperwork get approved? How will I be able to communicate with him? Will we have enough money at each stage in the process so that we don’t delay it? Did I get the email that we've been matched with our daughter - the one I've been checking for five times a day for the last several months? What if the paperwork I send to the U.S. government is not filled out properly? Will he have attachment issues? Are we biting off more than we can chew?

And the beyond-measure benefits of these challenges include: Coming to the end of myself and being reliant on a big God that is faithful, the sweet words of a child’s prayer saying thank you for my family, visiting the doctor for a checkup and knowing she is healthy and well-nourished, observing the boys caring so sweetly for their sister and having my heart just about explode with joy.

Challenges? Yes; Worth it? ABSOLUTELY!


Tim and Michelle with their daughter in Ethiopia
Q: Describe your feelings/emotions when you first met your daughter? How did it feel to bring her home?
A: After five months of paperwork, we waited to be matched with our daughter for another year before getting our referral phone call. On that day which by the way was my birthday, our agency sent us an email with photos. Tim and I sat at the computer like the expectant parents we were…double clicked on the file…there she was! We both gasped and whispered, “she’s beautiful!” Our hearts were captured at that very moment.

About six weeks later we were in the agency’s transition home in Ethiopia. It was a large room with indoor-outdoor green carpet and a few toys. The coordinator asked the nanny to bring our daughter to this room. The nanny, holding her, stopped in the doorway without crossing the threshold and my eyes saw those many pictures which I had been staring at for weeks just spring to life. There she is! It was just as momentous as when the doctor announced three times over, “it’s a boy!” I remember holding her and feeling her warmth, her presence, cradling her head in my hand.

Unfortunately, we had to leave her at the transition home for an additional three months after we met her. On our second trip to Ethiopia we picked her up and had her with us at the transition home which was amazing! Then on her first birthday, we landed in the U.S. and brought her home and she met her brothers! What a birthday gift!!

She's home! Her brothers greeted us at the airport.
 Q: How do you or will you teach your children about their home country?
A: We already talk about Ethiopia regularly. She knows it is in Africa and she enjoys Ethiopian food even when it’s spicy. She also has more than one friend who was also adopted from Ethiopia at about the same time as her. We hope to return there some day but time will tell whether we will be able to make that happen.

About China, we plan to take up some strong traditions especially related to the Chinese New Year which is a huge celebration in China. There are other festivals and traditions that we have learned about in our pre-adoption training that we would like to begin observing. Another excellent resource is being near a large city with both Ethiopian and Chinese culture to experience.

Q: Describe a typical day in the life of a working mom with 4 soon to be 5 children?
A: LOL! The days begin early and end late especially with children at varying ages. The younger ones are up early and the older ones are up late. And they typically all need mom for something. We rely heavily on being organized and coordinated. I have a corporate job which I've had for 25 years. Due to the anticipated additional cost of having a fifth child, I have added hours to my work schedule. I now work 30 hours a week but I have the ability to work from home most of the time. Without this flexibility I would not be able to do what I do. My commute time from work to dinner preparation is about 30 seconds. Overall, it’s challenging but it works and I wouldn’t have it any other way!! Unless of course I won the lottery and I could allocate all my time to the family.

Q: Do you have any words of advice for prospective adoptive parents?
A: Being a parent of any child, whether biological or adopted, will stretch and grow you in ways you never anticipated! There are some unique challenges with parenting a child who comes from a hard place. That child will almost surely experience grief, loss and doubt to some degree at some point in their development. Don’t try to handle these challenges without the support and help of people who have walked in your shoes or from seasoned professionals. Also, dear prospective adoptive parents, you are a fulfilling a unique role in God’s family by caring for an orphan; God Bless!

Thank you Michelle for sharing your family's journey. I can't wait to meet the newest member of your family. If you would like to help this amazing family bring their son home, you can do so at Ciochon Family Adoption From China or for more information and updates, join their Facebook group, Operation "Bjorn" Adopting from China.  Also, if you are a leMOMade reader and would like to share your story, please send me an email by clicking the link in the left column.

Tuesday, September 9, 2014

Special Edition: My Lung Transplant Journey, September 9, 2014 - Impatient Inpatient

15 months, 16 days and counting . . .
That's how long we've been waiting for my new set of lungs!

The wait now continues with an unexpected twist. I'm waiting at the Cleveland Clinic on the lung transplant floor because my condition has seriously declined and my supplemental oxygen needs are too great to be managed at home. The wait may be a few days, several weeks, or even months, but the ultimate goal for the transplant team is to keep my condition stable, build my strength, and boost my weight during the wait for the perfect match.

And that there's the rub, finding the perfect match. Although my lung allocation score is quite high, in other words I'm high on the list, it really doesn't matter if they cannot find the best match for me. The single most difficult problem with finding me the best match involves a complicated problem known as high antibodies. It's difficult to explain because although I'm a very educated patient, I'm not a doctor or scientist. The transplant team attempted to address this problem by giving me monthly IVIG infusions for the past six months in an effort to desensitize my body to the antibodies leading to the goal of finding a perfect match. However, as of today, they do not know if this protocol is working, nor if they plan to continue it until they obtain more information from recent test results. Without the best match possible, chronic rejection of the new lungs is likely, and with limited lungs available for donation across the country, lungs that are not not suitable for me could give new life to another person on the waiting list.

Yes, that's heavy stuff. That's what we're up against. It's been a very difficult journey for me (and the family). There's been lots of tears, frustration, anxiety and more along this road, especially during the last three months or so as my health declined, making it harder and harder to breathe even while doing the simplest of daily activities. I certainly will not be described as one of those people who "never complained about their illness" or questioned the fairness of it all, because I have many, many times over. I'm human.

My hope that with this huge bump in the road, I can be brave and patient, and have faith that God will bless me with new lungs very, very soon.

I will not go down without a fight!

Wednesday, April 23, 2014

Special Edition: My Lung Transplant Journey, April 23, 2014 - Quote of the Week

Lucky me, a handsome guy I know has this to say about organ donation:


Simple and to the point! April is Donate Life month.
 Please register to be an organ donor!

Meanwhile, here's a brief update about me - we're still waiting! I did have a "dry run" on March 16, which was very exciting and emotional! To make a long story short, we received an early morning call that a match had been found. We had some time to get ready and get over to the Aurora airport to board the private medical jet to Cleveland. It's a short plane ride, just about and hour, so when we arrived, we were transported to the hospital via ambulance, then off to the transplant ICU to get prepped for surgery. At this point, we had no idea if it was a go or not as we still needed to hear from the team about the viability of the lungs. In a couple of hours, we received the disappointing news from the doctor that the lungs had pneumonia and were not suitable for transplant. We stayed overnight and headed for home the next day, feeling exhausted and defeated - sort of like having an ice cream cone in your hand and the scoop falls on the ground! Nonetheless, at least the run gave us some insight for what to expect when a call comes again! We are hopeful, and prayerful, that the call will come soon - perfect lungs at the perfect time.


Thursday, February 27, 2014

Special Edition: My Lung Transplant Journey, February 27, 2014 - The Waiting List Post 4-6

Hello all, I'm a bit behind in updating my posts for The Waiting List storytelling project. My apologies. My mind works much faster than my body. So here are a few posts from the last couple of days. Enjoy!

Post 4, Weary

The Waiting List, 2/25/2014, evening, Instagram
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Weary. During the past few months, it's been getting harder for me to do things around the house. I get tired easily, and I always need to stop for a little break by resting my head. It's frustrating!

Post 5, Hopefully Devoted

The Waiting List, 2/26/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my daughter. Hopefully Devoted. Nearly every night before bed, my husband will rub my back because it's sore or itchy. I often sleep downstairs in a twin bed because it's much easier than climbing the stairs up to our bedroom, and sometimes my coughing keeps both of us awake. For now, It's better for us to sleep well than to be together, but I miss him. I think he misses me too.

Post 6, Tough Cookies

The Waiting List, 2/27/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my husband. Tough Cookies. I'm so proud of my children. Despite living day to day with a mom who is seriously ill, they are smart, athletic, funny, creative, musical, and all-around good kids. Recently, we prepared a special homemade pizza together for their dad's birthday. They help me with many things around the house, and for that I am grateful. They are resilient.

Tuesday, February 25, 2014

Special Edition: My Lung Transplant Journey - The Waiting List Posts 2 and 3

Dear Readers, I just want to express my gratitude to those of you who have been following my story. I've been getting lots of positive feedback about this project, and I appreciate all the kind thoughts and prayers. Perhaps you might be wondering why I would share so many details about our lives with the world. My main goals are to be an advocate for organ donation, to educate others about this journey, and to find my purpose in this life challenge. I hope to inspire others who are facing similar challenges, and to give people an honest look into what it's like to be waiting.

Post 2, The Bag

The Waiting List, 2/24/2014, evening, Instagram
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2014. Photo by @suzib66 The Bag. When they called to tell me I had been listed for a transplant, they said, "Pack your bag." So I did. This bag has been sitting in my bedroom for 9 months now. A friend of our family made this angel pillow for me to take along. I'm also bringing photos and artwork from my kids when the call comes. I didn't really know what to pack.

Post 3, Oxygen

The Waiting List, 2/25/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Oxygen! We all need O2 to breathe, but I need more than a healthy person. I cried 5 years ago when my doctor told me I needed it. Although it helps me breathe, it's also like a ball and chain. My tubing gets tangled up around the house, and it's hard to carry out and about. We always worry I will run out of oxygen, and it's very scary when I can't breathe or have a coughing fit.

Monday, February 24, 2014

Special Edition: My Lung Transplant Journey, February 24, 2014 - The Waiting List Project Post 1

Today marks exactly 9 months on the waiting list for new lungs, and it is my first "official" post of The Waiting List project. (I did a few test posts over the weekend).  Please keep in mind that addition to Facebook, this project can be found on Instagram, but you don't need to be an Instagram user to follow along. I will try my best to post my photos and writing here on the blog so you can keep up to date. Instagram is a little tricky, and I'm still learning to use it so bear with me. Please share my post with others as the purpose of the project is to promote organ donation for all of us nationwide who are waiting.


FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. I'm Sue, a 47-year-old, wife, mother, daughter, sister, and friend. I'm living with Scleroderma, a rare autoimmune disease that has severely damaged my lungs. In my home office, I post some of my favorite memories like old photos of my beautiful children, Miss O and A, and my devoted husband Tim. I love them so much. The bottom left photo of me with my young children was taken ten years ago shortly after my diagnosis of Scleroderma. We really didn't know at that time how my illness would drastically change our lives. One of my greatest fears is that my children will only remember me as their sick mom, especially if the lung transplant is not a success. My illness is hard for us as a family in so many ways, but despite our challenges we just keep on keeping on. #thewaitinglist #whatareyouwaitingfor #organdonation #donatelife #lungtransplant #scleroderma #pulmonaryfibrosis #pulmonaryhypertension


Friday, February 21, 2014

Special Edition: My Lung Transplant Journey February, 21, 2014 - The Waiting List

It's recently been called to my attention that I have not updated this blog since November! Oh my! But in my defense, it's been a long, long winter wrought with cold and snowy weather that essentially has kept me in the house since Christmas Day. I know some of you may be thinking, "Hey, that's the life! She must lounge around all day and eat bon bons. I wish I could do that." Trust me, no you don't. It's boring and sometimes lonely, and there is only so much bad daytime TV to watch before you start going stir crazy. But enough about all that, I'm going to share with what's happening next week.

FYI - it's not the transplant surgery because if you've been following my story, you should know by now that I'm waiting for the perfect match, and that match needs to come from a deceased person who made the selfless decision to be an organ donor. It's been nine months since I've been listed at the Cleveland Clinic, and my match still has not been found. Geez, I could have carried and birthed a baby during this time! Anyhoo, back to next week.

Starting on Monday, February 24, I will be a guest editor on The Waiting List, which is a storytelling project focused on organ donation. The Waiting List can be found on Facebook, Tumblr, and Instagram (@the_waitinglist) I came across the project by following the story of a brave young girl named Angel who has been waiting for a double lung/bone marrow transplant since July 2013. I will be sharing my transplant journey with photos and writing focusing on the challenges of living with a serious illness while waiting for new lungs, and in turn, a new life. Please join me on this journey by following me here, on Facebook or Instagram @suzib66 or @the_waiting list. Thank you!

Sunday, November 24, 2013

Special Edition: My Lung Transplant Journey November 24, 2013 - In the Que


I've hit the 6 month mark on the waiting list for a double lung transplant. That's . . .

  • 15,897,600 seconds
  • 264,960 minutes
  • 4,416 hours
  • 184 days
  • 26 weeks (rounded down)

  • During this time, I've discovered many things about myself. Here are just ten:

    1. I'm not very good at waiting.
    2. I still don't like using supplemental oxygen although it's necessary to keep me alive and kicking.
    3. Eating a lot to gain weight is not as easy as it sounds.
    4. I can spend hours each day doing a whole lot of nothing.
    5. I cry over many things, but if it's spilled milk or messy things, I usually swear.
    6. I am oh so proud of my children. They are smart, talented, athletic, funny, determined, helpful, and resilient people despite the challenges of having a sick mom.
    7. At times, these same children drive me crazy!
    8. I chose the best husband ever. I could not imagine navigating this journey without him by my side. I often do not give enough credit.
    9. He drives me crazy too!
    10. Pajamas or yoga pants are the new black.


    Wednesday, October 9, 2013

    Special Edition: My Lung Transplant Journey Oct. 9, 2013 - The Big 5-0!

    No, it's not my half-century birthday! Not yet anyway. 50 is my new LAS or Lung Allocation Score, which means I'm much sicker than I was four months ago when I was first put on the transplant list with a score of 40. What is the LAS? Essentially, it's the transplant candidate's place on the waiting list. Scores range from 0-100, with 100 being the most gravely ill people on the list who are given the highest priority for transplant. However, how donor organs are matched to recipients is quite a complicated process. Many factors come into play: blood type, size of the donor and the recipient, and the antibodies of each person. In most cases of lung transplant, the donor is deceased. In other words, I cannot schedule this surgery. I have to wait for a person to die - a person who has made the selfless and generous decision to be an organ donor. "The perfect lungs at the perfect time." That's how one of my friends, who also has scleroderma and is a transplant candidate, describes the difficult waiting process. Recently, I discovered this video that explains organ donation in a straightforward and simple way:



    Just in case you skipped the video, here is a chart that explains the transplant process:


    Wow! That looks easy on paper, doesn't it? But it's a long and challenging journey! I sometimes feel if I can endure all the ups and downs and the twists and turns on this bumpy road, the actual surgery might be a walk in the park. Luckily along the way, I've met many inspirational people who are lung transplant survivors! Here is a photo of me with three survivors at a summertime U4Sue! New Lungs New Life fundraising event. These three dear people are a wonderful source of support for me, and I'm so happy to know them.
    Joan, Roseann, Rick and little ol' me at the summer soiree in August.

    Just a few notes: We have been truly blessed by so many people who have supported the U4Sue! campaign by attending events or making donations. As you can see by the thermometer to the right, we have raised more than $8,000! Keeping in mind the uncertainty of our health insurance plan (due to changes that might occur with the Affordable Care Act) as well as the unpredictable nature of the waiting period, which may require many more visits to the Cleveland Clinic than we anticipated, we've decided to increase our fundraising goal to $15,000. The next event on the calendar is a movie night FUNdraiser on Saturday, Oct. 26, 7 pm - 10 pm, at Community Christian Church in Montgomery, IL. We are seeking volunteers to help at this event or to donate items such as wrapped bite-sized or fun-sized candy, bottled water or pop (small and regular sizes), bright colored napkins and straws, and long glow sticks. Here is an online invite with more info:

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    You also can check out the event page on Facebook or send me a message here by clicking on the email button, then I can happily fill you in on all the details. Thank you!

    Wednesday, July 10, 2013

    Special Edition: My Lung Transplant Journey July 10, 2013 - Life on Hold

    I am in a holding pattern. That's just how one of my very good friends described what's happening with my life right now. I'm waiting. We're waiting. Again.

    This time we are waiting for THE call from the lung transplant center. It can come at any time, day or night. We jump every time the phone rings. If the caller ID shows the Cleveland Clinic, we must answer the phone. However, if  the call comes after business hours, it might just be the unknown cell number of the on-call coordinator, so again, we must answer the phone. The call may come within days, weeks, months or even longer!

    Meanwhile, while we wait, we are preparing as best as we can for the call. It's almost like preparing for the birth of a baby, but without an expected due date, it's so much different. One way we are preparing for the transplant is by planning and kicking off our fundraising campaign, U4Sue! New Lungs New Life. While our health insurance will cover most of the medical costs of the surgery, there are many other expenses that our insurance will not cover like travel, lodging, and household expenses for myself and a caregiver in Cleveland for at least three months after the transplant. Travel includes the clinic's medical jet, which will fly us out for the surgery when a donor match is available. Let's just say we will not be flying economy, instead it's more like super-duper first class for a rather large amount of dosh (as my sister from London would say). We also will need to keep up with our household expenses here in Yorkville. It's quite a huge endeavor!

    So that leads me back to our fundraising campaign.  I created this little promo to spread the word:

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    The promo includes one of my favorite songs, "Whole Wide World" by Mindy Gledhill. It's upbeat and inspiring. I'm hoping my lung transplant will be a success so I will have the chance to do so much more with my life besides waiting . . .



    If you would like to donate online to U4Sue, you can do so via PayPal by clicking the donate button in the right column. You do not need a PayPal account to do so. Donations also are being accepted at Old Second Bank, 26 W. Countryside Parkway, Yorkville, IL 60560 c/o Victor Ramirez, Universal Banker. Please make checks out to Timothy or Suzanne Borowiak, account number 12201033425. If you would like to keep up with the campaign on Facebook, just "like" our page, U4Sue New Lungs New Life . Thank you for your support!

    Wednesday, February 13, 2013

    Catching up, staying in, missing out

    It's mid-February and I'm just now getting around to writing the first LeMOMade post of 2013. I could say that I've been too busy to write, but the truth is I've been hiding out in my house avoiding flu germs, sporting flannel PJs, and contemplating the "what if's" of my life. In late January, we headed back to the Cleveland Clinic for more testing and appointments as part of my lung transplant evaluation, and I'm still not done! To make a long story short, I'm closer to being listed as a transplant candidate, but the final decision is pending the outcome of more GI tests.

    So once again, we wait.

    Meanwhile, there are so many details to work out if the transplant is a go - travel, lodging, childcare arrangements, legal matters, caregiver plans, financial issues. The list goes on and on. At the same time, day to day life continues: kids need to be here or there, papers need to be signed, laundry washed, groceries bought, meals made, house cleaned . . . you get the idea. It's exhausting!

    On top of all that, winter is not the best season for my health. Cold weather makes it difficult for me to breathe, and it flares up problems with my hands. This year has been especially hard because I require more oxygen to go out and about, and I need to avoid crowds because of my immune-suppressed body. I've missed gymnastics meets, soccer games, band concerts, recitals, church services, and more. The kids understand, but my heart breaks a little bit each time I say, "Mommy can't go because she is sick." It's sad to be left on the sidelines or stuck in the house. It is lonely too.

    That's why the possibility of a lung transplant, although scary and overwhelming, fills me with hope. I might have a second chance at life - a life filled with simple pleasures or exciting adventures. Oh the things I could do with new lungs: walk up the stairs in my house without oxygen tubing trailing behind me, swim, bike, or hike with the kids, travel, ride a horse, climb a dune, skate, kick a soccer ball, or dance. Breath easy. Ahhh . . . that would be awesome!

    If a successful transplant is in God's plan for me, the upcoming months will be busy with preparations. With the help of family and friends, we intend to work on a fundraising campaign to assist with the transplant-related costs that will not be covered by health insurance. We also plan to establish a household management team where we will seek volunteers to help out while I'm in Cleveland during the 2-3 month recovery period. More details about all of these activities will be coming soon in the event that I am listed. Stay tuned to this blog for updates.

    For now, we seek your loving thoughts and prayers as this difficult journey continues.
    So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand, Isaiah 41:10

    Love and God's blessings, Sue

    ps. If you are not up to date on my story, please take some time to read the November post, Waiting, or My Story found on the right sidebar. Thank you.

    Wednesday, November 14, 2012

    Waiting . . .

    is the hardest part.

    As a person living with a chronic illness, I spend a lot of time waiting:

    Waiting in the doctor's office

    Waiting for prescription refills, test results, or insurance approvals

    Waiting for pain to go away

    Waiting for promising new medical treatments or research

    Waiting for good news . . . or bad

    All that waiting is a huge weight on my shoulders. It's a burden I carry with me every day. It's exhausting, and makes me quite anxious.

    For about a month or so, I've been waiting for an upcoming visit to the Cleveland Clinic where I will be evaluated for a lung transplant. The organ transplant process is quite complicated, and I am complicated patient with a rare, incurable disease, Scleroderma. Earlier this year, I was turned down as a potential candidate by Loyola University Medical Center after more than a year of being watched by their lung transplant team. I was not accepted by them as a patient due to my various problems related to Scleroderma. I wrote a little bit about my Loyola experience on my archived blog, In Sickness and in Health.

    After being declined by Loyola, I took a little break to re-group. Then my pulmonologist at Northwestern sought out other potential transplant centers with mixed results: Duke - no, too risky, University of Pittsburgh - maybe, but problems with my insurance coverage, then the Cleveland Clinic - yes, but . . .

    Yes, they will take a look at me, my medical records and my history, and my complications related to Scleroderma. Yes, they will give me a series of medical tests, mostly pulmonary function testing, and I will meet with several members of the transplant team during my two-day visit. Then . . .

    The waiting will begin again as we do not expect to have any answers during next week's visit. But we will have questions:

    Will I be accepted as a transplant candidate? If so, when would I be listed? If not, what happens next?

    The waiting is the hardest part.
    Every day you get one more yard.
    You take it on faith, you take it to the heart.
    The waiting is the hardest part
    - Tom Petty