Friday, February 27, 2009

Good news about Musa

First the Phillies won the World Series. Then Obama was elected President of the United States. And now this...

I'm starting to believe that nothing is impossible.

Musa's first surgery took place this morning at 7a.m., Ghana time. And Tom just called to tell me that the surgery was a success! Mind you, I'm hearing news third-hand from a man with a very thick West African accent, and he has received his news in 2-minute snippets over a third-world phone connection, but I'll try to convey what I got from the conversation: This first surgery was an exploratory surgery because without any medical records, the doctors needed to get a better look at what they're dealing with. They were able to identify and repair some "errors" that occurred in Musa's last surgery in Sierra Leone, and they have taken some specimens of his colon to determine how to best treat him. Hirschprungs is a disease of the nerves in the bowel, so from what I understand, they are trying to identify which are the damaged nerves and which are the viable ones so that they can successfully resection his colon. The best news is they are confident that resection is not only possible but permanent -- and Musa is healthy enough to withstand the necessary surgery. While the pathologists review his case, Musa will remain in the hospital for observation for at least a week before his next surgery -- which we all hope will be his last surgery.

Tom says his sisters, Ruth (Musa's mother) and Bernadine (with whom Ruth is living now in Ghana), are both in very high spirits. Bernadine has some connection with doctors in the hospital, and she is extremely confident in their abilities and knowledge -- and she will stay on top of them to uncover the details of Musa's case as they unfold. (We all know hospital patients need a strong advocate, and I'm sure this is 10 times more important in a Ghanaian hospital, but it sounds as if Bernadine is up to the challenge.)

Please keep Musa, his mother, Ruth, and his entire family in your prayers in the coming weeks. He has a long road ahead of him, recovery-wise, but so far everything sounds positive. I will keep you posted as I hear news from Ghana...stay tuned.

All I can say is wow. Just wow. WOW!

Thursday, February 26, 2009

For better or worse, it's going to happen

Well, folks, we did it -- we raised enough money for Musa's surgery. Unbelievable! THANK YOU! I really didn't think this would be possible, let alone happen so quickly. (We even have a small "just in case" amount set aside.)

Ruth has half the money in hand, and the remainder will be wired to her by Tuesday. Musa's first surgery is scheduled for Friday morning, 7 a.m.

And of course now that the frenzy of fundraising has settled a bit, I'm actually thinking rationally, and I'm feeling all sorts of nervous about this -- please let it be the answer, please let us be helping more than harming. The child has been through five surgeries already, and anyone who's had an appendix removed or a C-section knows that abdominal surgery is no picnic. Before he goes home, he will have two more surgeries. That makes seven, all told. In just 11 years of life! Oh my goodness. (Again, I can't help but think there's a bigger plan for this child, to have already overcome such tremendous odds.)

Korle Bu Hospital is the biggest in Ghana, a teaching hospital associated with the University of Ghana, so I'm confident that he's getting the best care available, at least in West Africa. I'm just praying now that these doctors are solid, that they know what they're dealing with, that there will be no surprises or complications, that he will heal well -- and grow up strong.

Please keep Musa and his mother, Ruth, in your thoughts and prayers tomorrow and throughout the coming weeks. And I thank you again for your generosity and kindness.

Moving a mountain for Musa


I have great news -- we are very close to our goal for Musa! We raised enough in just one day that Ruth can give the hospital a "good faith" payment for the first surgery. As far as I know, Musa's first surgery will take place this weekend. Then he will be in the hospital for observation for 7-10 days before having the second surgery.

We need to come up with just a few hundred dollars more to pay for the hospitalization and surgeries, and I'm hopeful that we may even come up with a small amount to give to the family for any additional living expenses Ruth incurs while in Ghana, or to help them when they return to Freetown, since she has given up her income to take her son to Ghana.

Donations have been coming in since my initial plea -- and I am so moved by the generosity people have shown. I've set up a PayPal account, too, to make it easier to donate; just click the button in the top right-hand corner of my blog.

Growing up in Sierra Leone is hard enough for even the healthiest of children. Again, I feel that if we can all give just a small amount -- and perhaps pass Musa's story on to others who may feel called to give -- we can give Musa an incredible gift.

I feel strongly that just showing this family so much love is changing their lives -- and you never know how far the ripples of love and generosity may reach!

Tuesday, February 24, 2009

Working on a miracle

There’s an 11-year-old boy in Freetown, Sierra Leone, named Musa Kabba who needs our help. I have blogged about him twice before (here and here), and although I have never met him in person, he and his family became very important to me in the fall of 2007 when they opened their hearts and home to my sister, Robyn, who was at the time a college junior living in Freetown for five months. Musa also happens to be the nephew of a friend at my church, Tom.

Musa has a condition called Hirschprung’s Disease. In the United States, a child diagnosed with Hirschprung’s Disease can often be treated with a pull-through procedure, in which a portion of the colon is removed then re-sectioned. Many children with this disease go on to live normal lives, with modified diet and good healthcare.

Sadly, Musa has undergone five painful surgeries in Sierra Leone, a country where the doctor to patient ratio is roughly 1 to 300,000; Sierra Leone simply lacks the medical infrastructure, professionals, and technology needed to treat Musa properly. Musa’s last surgery almost two years ago left him with a colostomy that is unlike anything we see here in the U.S.: a portion of his intestine protrudes from his body into a colostomy bag, into which all his waste is collected also. Obviously this puts him at a terrible risk for infection and greatly affects his quality of life and that of his family. His family has been told there is nothing more that can be done in Sierra Leone. Tom, who has been here in the U.S. for over 10 years, had been sending the family money—until he lost his job and has had a hard enough time just supporting his immediate family here in Delaware.


When I heard Musa’s story and saw a few photos that my sister had taken, I was compelled to try to help. I couldn’t imagine the pain his mother, Ruth, lives through each time she has to clean him and dress his colostomy. Immediately when I presented this to my pastor in December 2007, my church raised funds to send a shipment of colostomy bags to Musa. I then was able to procure an ongoing supply of bags for Musa, thanks to Hollister International, the bag manufacturer. This alone was a huge answer to prayer, and a great relief to Musa, Tom, and the family.

Phase 2 of Project Musa was much bigger and more complex. I and a few friends from my church worked for over a year to find a hospital in the U.S. to treat Musa, ideally a hospital that would donate its services. We looked for grants and sponsorships, and we were able to raise almost $2,000 through individual appeals, which we hoped would be enough to at least pay for transportation to the U.S. I approached six hospitals in a number of regions of the country, and unfortunately, I was told by countless doctors and social workers that the expense and risk involved with bringing Musa here for treatment was far greater than the benefit. Meaning, there’s no guarantee, because we don’t have any kind of written medical records, that Musa actually has Hirschprung’s, and there’s no guarantee that his condition is actually treatable, and there’s no guarantee that bringing him and his mother here for six to eight months would not be more harmful to him and the family than it would be good.

Although this was disappointing, I have continued to pray, in the hopes that the Lord would show a new direction, give us a viable answer. We decided to turn over the funds we had been granted to Tom and the family, for Musa’s continued care.


Tom’s other sister, Bernadine, started researching hospitals in Accra, Ghana, where she is currently living and studying theology. She found a team of doctors at the children’s hospital in Accra who were willing to take a look at Musa. Tom purchased plane tickets and passports, and within a week, Musa and Ruth were delivered to the hospital in Accra. The remaining money paid for tests, and the doctors determined that with two surgeries, Musa’s colon can be resectioned—and there’s a very good chance he will live a normal, healthy life.

Soak that in for a moment, would you? After all this time, this child is two surgeries and about three weeks away living a normal, healthy life!

As is so often the case with very good news, there’s a bad-news side to this tale: The surgeries and post-op care will cost an additional $5,000. Of course Ruth does not have $5,000, and frankly, neither does my church, so Ruth has been able to negotiate them down to $3,500. And because he is from another country and can’t spend months in Ghana, the hospital is willing to move Musa ahead of all the others waiting for surgery—if Ruth can guarantee by the end of this week that she can pay. They would like to do the first surgery this weekend, in fact, then observe him for a week before doing the second. Ruth is not telling them that her funding is coming from an American church.

OK. I know what you’re thinking: This sounds very much like those spam e-mails I receive every week. However, this is real and this is happening very fast—and the life of a little boy depends on us.

I am currently trying to find extra change in the couch cushions of my house and all my friends’ houses—and all the houses of my friends’ friends! Just this morning we have come up with another $2,000 from my church and a few people who have continued to contribute to the fund we set up for Musa. This is huge!

Now what I’m wondering is, if 10 people would donate $10, then pass this message along to 10 other people who might donate $10, how much amazing could we do?

If you can find some spare change in your couch cushions, do you think you could donate $10 to Musa’s health care? If you can’t donate, do you think you can pass this message on to friends and family, perhaps reach out to your own minister to see if this might fall into your church’s call to mission giving?

If you do feel called to donate, I don’t want you to send money to me. Please send checks payable to Trinity Presbyterian Church at 1120 Darley Rd, Wilmington DE 19810. If you have any questions about how this money will be handled, please contact either of my pastors, Brad Martin (bradmartin@trinitypresby.org) or Barbara Price-Martin (barbarapricemartin@trinitypresby.org). We have set up a fund for Musa's medical needs specifically, and every penny will go to him and his family in Sierra Leone.

Or, you can donate through PayPal by clicking the button in the top right-hand corner of this blog. Every penny counts! And I know we are all stretched to capacity, so again, if you don't feel you can give money, that's OK -- pass this on to as many people as you can. Donations of prayers and good wishes count, too.

God speaks to us in many ways. Sometimes His voice is a whisper, others it’s shouting through a megaphone. This past year has been one of those megaphone times for me. When my sister left for Sierra Leone in September 2007, I was terrified. I prayed more earnestly than I have every prayed before. I was scared to have her so far away, and I prayed for her health and safety almost hourly; I prayed for my family’s courage and comfort while she was away from us.

At the same time, there was a family in Sierra Leone praying for their little boy, praying to keep him as healthy as possible, safe from infection, comfortable in his illness. And there was a family here in Delaware praying for the means to help their family so far away. They have been praying for a miracle.

It’s clear the Lord has heard all our prayers, and it’s clear He put Tom and me and Musa and Ruth and Robyn together for a reason. I believe that just the fact that Musa is still alive means the Lord has a great plan for him, too. I believe that Musa and his family have been forever changed already by the love and support they’ve received from people across the world that they will never meet.

If you can’t donate any money now, I completely understand. What I will ask for, though, is your prayers. Pray for Musa’s continued care, pray for his mother who is constantly battling for him. Pray for me and my friends in the church as we continue to scrape this mission together. Pray that your own children remain healthy, and pray that if ever you need support, someone is willing to reach out to you and your family, too. That is my underlying reason for taking this on in the first place: I pray each day that my family remains healthy, and I hope that if there’s ever a time when we need help, someone somewhere reaches out a hand.

And if you’re not into prayer, that’s ok too. I just need you to do whatever it is you can to help this child. We all need to help each other. That’s what being a citizen of this planet is all about, and it’s summed up beautifully in the African philosophy of ubuntu: I am what I am because of who we all are.

Nothing is impossible. Please help in whatever way you can—donate, pray, or simply pass this message on. Whatever you do for Musa is an act of complete love and generosity, and we are grateful. Thank you.

Tuesday, February 10, 2009

That time of the month

No, not that time of the month (but I got your attention, didn't I?) --

The time of the month to which I refer is that time of the month in which our mortgage check has been cashed, we've paid the preschool bill for the month, we've had a costly car maintenance appointment, we've socked extra money away into our savings account because I'm afraid my job will be gone any minute, we've purchased all the groceries and gas we need to get through...and pay day is still a week away. The balance in our checkbook is ridiculously low. I'm talking double-digits low. I've put up the Spending Embargo sign.

Anyway, this week, instead of calling Big Daddy in my usual low-balance panic on Friday morning and saying "no more spending!" I called and presented him with a challenge: Let's see if we can get through this next week without spending any money out of our joint account. This means, eat only the food we have in our house; we entertain ourselves only with the DVDs, CDs, and toys that we already have; we find things to do outside the house that are free.

This means, too, that if we run out of something, too bad. Or, buy it with cash that's in your wallet. This came up Sunday evening while Big Daddy was trying to get control over the mountain of laundry that's been building all week: He ran out of detergent. We had to make a decision -- let the laundry pile go until Friday when we get paid and can go get more detergent, or go to Rite Aid and buy the cheapest bottle you can find, just to get through. I was all for the first option, but he decided to go blow $3 of his limited cash supply on cheap detergent. (So if you smell something funny when I walk by this week, you'll understand.)

We made it through the weekend without using our debit cards at all, thanks to Netflix, the library, and free admission at the Brandywine Zoo. I'm proud of us. The real challenge still lies ahead: We each started the week with about $10 in our wallets, and that's all the money we will be able to use this week. The ultimate test! That means no lunches out, choosing wisely when Big Daddy has to stop for a soda on the way home, no trips to Target to wander around looking at toys with the Boy. I do have to purchase Valentine's cards for Sweet Boy's class party Friday; I think I can get these at the dollar store. And I believe I have a few stamps left so we can mail our valentines to Sweet Boy's grandparents.

It may come down to the wire -- but this is an interesting challenge. I wonder how long we could go without spending the here-and-there amounts that we so often do. And I wonder how much we'd end up saving! It just takes a little forethought and planning. I may just extend this Spending Embargo through the end of the month to see how we come out.

Monday, February 9, 2009

Project Musa update

(Note: There are photo images in this post that may be upsetting.)

As many of you know, I have been working for about a year now, along with friends from church, to bring a little boy from Sierra Leone here to the US for much-needed medical treatment. As I wrote a few months ago, we've had to make some difficult decisions lately about how to proceed.

Unfortunately, despite many phone calls and e-mails to various doctors, hospitals, and aid organizations around the region and across the country, we have not been able to find a hospital in this country willing to take on Musa's treatment. In addition, every professional we talked to felt that bringing Musa and his mother to the US for treatment would be far more disruptive to him and his family than it would be helpful. And, because these hospitals were not able to donate their services, raising the hundreds of thousands of dollars it would take to bring him here doesn't seem like a feasible plan in such trying economic times. In fact, all of the hospitals and many of the organizations we approached told us that their budgets for such aid had been cut, and they have to focus on children in the US and immediate region.


We've decided, therefore, to focus our aid to Musa in a more practical way. We have been able to secure free and reduced-cost medical supplies for Musa through Hollister International, for as long as he needs them. This provides a huge amount of support for Musa and his family, and we are happy to have been able to help in this way, at least. We also have opened a special fund at my church for Musa to help the family get him medical treatment in Africa. Musa's uncle, who lives here in Delaware, has opened communication a few people in Ghana, in the hopes that medical treatment might be available for Musa at the children's hospital in Accra. We have already provided the family money so they could get passports for Musa and his mother, and we are hopeful that this hospital in Ghana may be a good option. Then the money we have raised so far can be used for Musa's travel and medical expenses in Ghana -- which is a much more feasible trip, obviously.

I'm writing today for a couple of reasons: First, to update you on our endeavors, because you have asked me of our progress, and because you have prayed for Musa and for me during this last year. I can't tell you how much I appreciate your support, suggestions, and prayers. Second, many of you have asked if you can help in any way financially. Please know I am not asking you to give money unless you feel absolutely compelled, because really, I don't know how the money will ultimately be used, other than to help Musa in some way. However, if you do feel called to help with a small donation, you may send a check payable to Trinity Presbyterian Church, 1120 Darley Rd, Wilmington DE 19810. Mark your check "Musa" on the notes line.


You don't have to let me know if you plan to contribute, but we're hoping to wrap our fundraising up in the coming week. If you have any questions and would like to contact the church directly, please call 302-475-5495 or e-mail Barbara Price-Martin at barbarapricemartin@trinitypresby.org.

Thank you for all your prayers and support -- even though most of you knew I'd bitten off more than I could chew, you all have been so encouraging and hopeful. This was truly a learning experience, and although I am disappointed that I didn't meet my ultimate goal, I feel satisfied knowing that Musa will receive continued care, and quite possibly the medical treatment he needs in Ghana. I have felt strongly through this whole process that just showing this child and his mother our love is more precious than any amount of money we could give them.


Please keep Musa and his family in your prayers. As the family keeps reminding me, with God, all things are possible. I hope to someday post another update -- with a photo of this beautiful kid, smiling and happy and whole!

Wednesday, February 4, 2009

Us time

My mother-in-law called this past weekend and made an offer I just can't refuse: She wants to come down to our house once a month to play with Sweet Boy while Big Daddy and I go out. Just the two of us. Alone. As a couple of adults. Can you imagine how wonderful that would be?

I didn't even let her get the entire sentence out before I yelled "YES! YES! YES! PLEASE!" Since Sweet Boy was born three-and-a-half years ago, I can count on both hands the number of times Big Daddy and I have been out on a date. It's sad, but true. We try to go out for each of our birthdays; we went to a couple of shows at the Walnut Street Theatre when Boy was an infant; and we had a really nice anniversary dinner at Harry's Savoy Grill last year. This past Christmas, we spent an entire day together while Boy was at school -- breakfast, shopping, movie, more shopping, sitting at a coffee shop holding hands and reading magazines -- it was fabulous. And I remembered how much I really like my husband's company.

So we're setting up a standing monthly sleepover with Nana starting, appropriately, on Valentine's Day. Sweet Boy is self-sufficient enough now that we don't have to worry about Nana having to lift him -- and really, if we time it right, all she has to do is help him brush his teeth and tuck him into bed. Easy-peasy. He doesn't get to spend as much time with Nana as he does with my dad, either, so it will be good for him to have one-on-one time with his grandmother. A win-win-win proposition!

Now the question is this: Whatever shall we do with a few hours of grown-up time?

Tuesday, February 3, 2009

Imagine the possibilities

I had to take my son for blood work this morning, at the urging of every doctor we've seen over the last month, to rule out his inheritance of the wacky lipid disorders and diabetes that his father has (and which all run rampant on his father's side of the family). Anyone who has held their child while a stranger sticks a giant needle in his/her arm know that this is horrendous. Sweet Boy was a trooper, though. Sure he cried, but he stayed still, rubbing his cheek against my cheek and sobbing, trying to sing along to "You Are My Sunshine" with me. I'm tearing up just writing this -- it was not fun.

Even more unfun than the blood draw, however, is the sickening, maddening, evil voice in the back of my brain that keeps whispering "Your baby has diabetes...your baby has diabetes..." He has no symptoms of diabetes, mind you, just these crappy genetics, so my rational brain keeps kicking the bad little voice in the crotch and telling it to shut the hell up. After all, 50% of his genes come from my side of the family -- the side that lives to be in their 90s chopping wood in the Maine winter -- but also the side that carries various cancers and heart disease and, oh yeah, diabetes. Shit.

A couple of years ago, I heard something in a radio news story that I cling to even now: By the time our children are in their 30s, they will not have to worry about cancer. This is how fast medical technology goes, even in an era of legislation that tries to stop it in its tracks. Isn't that awesome? Imagine it: Our children might birth their children in a world in which things like cancer, diabetes, and heart disease are merely items in textbooks. Kinda like chicken pox is now...remember chicken pox? We all had it, and probably have the scars to prove it. But thanks to modern medicine and vaccinations, our kids don't have to even think about that itchy, scabbing rash.

The cover story on this week's Time magazine centers on the scientists who have made breakthroughs in stem cell research over the last few years -- in the last few months! -- and offers great hope for those of us whose loved ones suffer from diabetes, Parkinson's, Alzheimers, and yes, even the Big C, cancer. I am amazed at what's possible, from treating a disease that's already in existence to discovering how a genetic disease starts in order to find a vaccine or cure. It's awesome, truly.

What's most interesting is that scientists have discovered a way to use any cell -- not just embryonic stem cells -- to move this technology forward. So in a way, as much as I hate to even utter these words, W's 2001 legislation that banned federal funding for embryonic stem cell research may have actually pushed the science toward an even bigger breakthrough. (Hmph, she mutters under her breath, he's still a monkey-faced boob!)

There's hope, people, regardless of what today's blood work shows. Always hope.

Monday, February 2, 2009

Monday morning pick-me-up

OK, so you've heard that Puxatawney Phil saw his shadow this morning and ran back into his little home. Bummer.

If you need a little pick-me up in light of this six-more-weeks-of-winter drag, try one of my favorite songs ever, "In These Shoes" by Kirsty MacColl, from her Tropical Brainstorm album. The video is so-so (well, actually the video is a bit annoying), but the song itself is just so fun -- just crank up the volume, walk away from you 'puter, and shimmy your blahs away. In fact, I recommend the whole darn album to keep the winter blahs at bay -- it's tropical and cheeky and different.


Sunday, February 1, 2009

Celebrating the end of January

Because January was so hard on this family, we decided to go do something refreshing and happy to ring in February. Today was so beautiful that the only option was to spend time outdoors. We got in the car and started toward Bellevue State Park, then Big Daddy had the brilliant idea to go to Valley Garden Park. I hesitate to even share this park with you because, well, it's gorgeous and not well known, and I kinda like to think that it belongs only to us. But the cool, crisp air is still in my lungs and I'm feeling magnanimous.

Valley Garden Park, located among the sprawling homes of the "chateau country" of Northern Delaware, off Rte. 52 near Winterthur, was donated by the duPont family (of course), and unless you see it for yourself, you would not believe that such a beautiful place exists in Wilmington: rolling hills, old gnarly trees, a stream with a number of trickling waterfalls, benches surrounded by lush gardens where one can just sit and wile away the hours. I can imagine gnomes and fairies living very happily here. And, as you can imagine, it's a photographer's dream. In fact, we discovered the park when we had our family portraits done there a few years ago, at the photographer's suggestion. I treasure the photos we got from that day, as well as the memories of the day itself.

We didn't think we'd be able to remember the way back this morning, but we made it eventually, after winding our way through the back roads of North Wilmington for about a half-hour. (I wrote down the directions and tucked them into the glove box; if you're very nice to me, I just might share them with you.) Today we hiked up and down snowy hills, tromping our footprints into the crunchy snow; we threw sticks into the little stream and watched them float down the waterfalls and into ice jambs; we played tag up and down the paved trail.

Another magical day that reminded me not only how much I love my boys, but how I'd rather spend time with them than with anyone. We vowed to come back in the spring and summer, to picnic by the stream, to hike up the unpaved trails. More days in Valley Garden Park will take place during the Year of Regaining Health, and I can't wait.