Wednesday, December 24, 2008
Christmas
When love and memories come to mind.
The cold winter weather at times is severe,
But never represses our holiday cheer.
With sleigh bells and stars and the babe in the crèche,
Magic and miracles don’t seem so far fetched.
Our family gathers with laughter and smiles
And lovingly spoils each little child.
There are cookies and candies and other nice treats,
Turkey and pie and such good things to eat.
Pretty wrapped packages sit ‘neath the tree.
We shift and shake them, wond’ring what they could be.
And sometimes we have one of those years
When we’re sad because someone is no longer here.
We’ll wipe each other’s tears and hug each other’s necks,
Then remind one another how richly we’re blessed.
Not everyone gets such a wonderful gift
Of having loved someone whom they so dearly miss.
For the measure of how special relationships are
Is how big a void they can leave in your heart.
Our love and memories cannot be severed,
And that is a gift we will treasure forever.
Heather Nall, 2008
Thursday, December 18, 2008
Not-So-Silent Night
We decided to take J to the candlelight advent service at church last night. This consists of a lot of Christmas songs and scripture readings. At the end, they turn out the lights and everyone is holding a candle. Starting at the front, the first person in each pew lights their candle from the ushers in the middle, and then the light is passed from candle to candle through the church as everyone sings silent night. It is normally a very moving and sentimental time. But this year, with J’s lack of church experience, toddler hood, and the close proximity to bedtime…… it was anything but. James just screamed and cried all the way through the song, and kept trying to grab our candles and then screaming when we wouldn’t let him. No one seemed to mind, and I sincerely hope that it wasn’t as loud in everyone else’s ears as it was in mine. I hope it didn’t ruin the experience for them. Now I’m really not looking forward to the Christmas Eve service!
Wednesday, December 17, 2008
Thursday, December 11, 2008
Storm The Gates!!!
Heavenly Father, I come before you now in humble adoration of You, and in awe of the vastness of Your love. I am so thankful that You have allowed me the gift of having Isabella and her mom and dad in my life. I thank you for Bella’s life. I thank You for the joy and the sweetness that she has brought into the lives of so many others, even around the world, as people follow her journey. I thank You for the gift that Bella is to her parents, and for the lessons that she has already taught them, and will continue to teach them throughout her life, as we know that parents learn much more from children than children learn from parents.
Father, I acknowledge that You are the Great Physician, and You are the Healer. You are Isabella’s Creator, and her Lord and Savior. You, and only You, Lord, can heal the disease with which Bella has been afflicted. My trust is in You, all day long. I ask You, Lord, even now, to place your hand of blessing on the doctors, the nurses, the family members who will be caring for Bella in the coming days, weeks, and months. I ask that You use the donor cells that Bella will receive as an instrument of Your miraculous love and Your mighty power.
Lord, I know that you are the source of strength, and I ask You to give that strength to Bella and to her parents as they face the long journey ahead. You are also the source of knowledge, and I ask You to grant knowledge and wisdom to Bella’s doctors and nurses, and help them to discern exactly the best way to care for Bella and all of her needs.
I ask all these things, not because I deserve them, or Bella deserves them, or her family deserves them. I ask these things because…as great and consuming as my love for Isabella is…..I know that You love her even more. I know that she is Your precious child, and that her suffering grieves You as it does me. I know that You wish to see Bella made whole.
Finally, God, I pray for Elizabeth and for her unborn baby. I pray that You place Your hand of protection on them. I ask that you keep them both safe during this time of stress and difficulty.
I ask all this in the name of Jesus, our Savior.
Amen.
Monday, December 8, 2008
I Saw the Spirit of Christmas this Weekend!
Well, our town had this “event” on Saturday, where Santa came to the town square in the fire truck to see all the kids. Kids came and sat on his lap and he gave them treats and stuff. The town businesses did a bunch of open houses and drawings as a part of it, to boost participation and holiday spending and such. So, as a part of the deal, they had this “Santa’s Workshop.” This was a building in which people were able to set up and sell their things, like crafts and baked goods and such.
When I went there, I stepped into this one lady’s “booth” and she had a bunch of really cute hair barrettes and things. There were these one barrettes that had these big flowers on them, really pretty. Then she had some headbands that were made with a place where you can clip the flower barrette onto the headband. Of course, I immediately thought of Bella. (She still has her hair, as the med that can possibly cause her to loose it hasn’t been given yet, and she may not loose it at all, but I have been anticipating the possibility)
There was the woman who was selling, and another lady who was a customer, and me. I glanced up into the hallway at R to ask him if I could buy one for Bella. All I managed to say was “Can I get one of these for Bella for when her…..” and I choked up. Of course, so did he and all he could manage was to nod his head, and I excused myself into the hallway to get my checkbook (I wasn’t carrying cash) and of course, I couldn’t control the tears and I was shaking really bad. Well, no one there except me knew why I’d suddenly lost it, and the women were really concerned and kept asking me if I was ok. I choked out “My best friend’s daughter is the same age as my son (pointing at the stroller) and she’s getting chemo right now, and this if for when her….hair….(blubber blubber blubber).
By this point, I am bawling, the other customer is crying, and the lady selling the barrettes is crying and I’m shaking and opening my checkbook, and she starts waving her hands and saying “Just take it. Just take it. She can just have it.” Then that made all three of us (and R) cry that much more, and it became quite the scene. But it really moved me that the lady would give that to Bella. I wish I would have gotten her name, but I was just trying to get out of there and pull myself together.
So, as soon as I can get the box put together to send, Bella will have a pink flower on a headband that she can wear.
Merry Christmas.
Tuesday, December 2, 2008
Hello.
Hi everyone. Hope you all had a wonderful Thanksgiving and that all your travels were safe and uneventful. We had a super great time here. We had a HUGE dinner at my Mom’s on Thursday, with Uncle P and Momma C and their girls, Big Bird and Sweet Charlie, Grams, and my family, including T who came down for a few days also. The food was fabulous, but it was the company we all craved and our hearts were filled to overflowing with love and laughter and good memory-making.
Thursday night I went to my Aunt’s house to celebrate with my Dad’s family. This ended up not being quite as much celebration as I’d hoped for, as J and I ended up showing up late. R and T were both sleeping and didn’t get to go. Aunt C had a fire going in her fireplace, which is open with no screen or door, so I spent the evening planted in front of the fireplace sweating and keeping J-man out of the fire. After some snacks and chit-chat, the ladies settled in for a Mary Kay facial “party” as my cousin has recently become a consultant. My other cousin’s husband spent that part of the evening acting as “nanny” for the J-man. Thanks again, B! You’re the best!
Friday was kind of a bust for me, as I frittered away the time I could have and should have been spending on putting up Christmas decorations. This was due to a silly misunderstanding in communication, as I did not understand that it was intended as a kind of “couples day” for Mom & Dad and Big Bird & Sweet Charlie. My bad. I got all dolled up and followed them all to my Grams house, and then they all went in to
Saturday I determined to get Christmas going in my house. Usually my tradition is to do this the day after Thanksgiving, so I really should not have deviated from that this year, but oh well. Such is life. So I just got up, put my hair in a scrunchie, and got to work. I was not a pretty sight at all, but my house sure was! The tree went up and the decorations began to take their places. James took a good long nap, which allowed me to get quite a bit done. Then my mom called and asked me to bring J to her house for a bit. I really was not wanting to go because I was on a roll, but here is where another little communication snafu happened. Big Bird had brought her backdrops and props and a special outfit and wanted to get J’s Christmas pictures taken that day! I’m telling ya, we should’ve developed an itinerary! LOL I would have loved to get in front of the lens with my boy for a few shots, but it was not going to happen that day in my sweats and my greasy hair and no make-up! Ha Ha Ha!
So, Big Bird and I locked ourselves in the room with J and tried so hard to keep him in front of the backdrop for the pictures. Do you know how difficult it is to get an 18 month old to sit still for pictures in his own bedroom full of toys when he just woke up from a nap and is full of energy? We had fun trying, though. And I do think she managed to get enough good shots to work with. The little guy is very photogenic, but lightening fast! And we also could have gotten some way cute stuff if the little booger would leave a hat on his head! Oh well, there’s next year I suppose. I am excited to see some of the stuff she did. I know they will be great.
Sunday was a super day. J-man took a good long nap and I got some more things done. Then when he got up, we hurried up and got in the car and went and picked up my mom and we all went to town for a little shopping. Honestly, all I needed to get was dog food and hamburger, and it was going to be a fast trip. But mom had other plans! We so rarely get to go out together these days, so she seized her opportunity and did some of her Christmas shopping by buying me some new work clothes. Thank you, Mamma. I feel like a new woman. When we got back home, she came to my house to help me put the lights up on my tree. We had so much fun just hanging out together. Just being with my Mamma for a few hours was enough to start pulling me out of my little funky attitude.
Then, yesterday, I had a nice long email-thread-chat with Big Bird. She helped me get my head back on straight and get myself set back on track. Life happens to everyone and you just can’t let yourself get myopic and miss the big picture. So, I’ve given myself a swift kick in the butt and I’m back to my old self again. My apologies to everyone for being a bum and a drag over the holiday. I love you all, and I know you love me too and have already forgiven me.
Here’s to the start of a great Christmas season. Merry Christmas to you all, and hope you keep Jesus in the forefront of your mind and heart as we close out 2008.
Love, Heather
Wednesday, November 26, 2008
Happy Thanksgiving
So, since this is likely my last chance to post until Monday, I just wanted to wish everyone a happy and safe Thanksgiving holiday. If you are traveling, please be careful out there. Remember my husband’s two rules about driving: 1. Watch out for idiots. 2. They’re all idiots!
We will be having a wonderful time at my mom’s house this year for
There will also be the bittersweet side of things. This will be our first big family holiday without Gramps and Max. Tears are expected, but welcomed. After all, as my mom says, the fact that we suffered such tremendous loss means we had something tremendous to loose in the first place, and THAT is truly something to be thankful for.
I love you Gramps, and I miss you terribly. And I’m still making a pan of crunchy dressing, just for you and me.
Tuesday, November 25, 2008
Monday, November 24, 2008
Friday, November 21, 2008
Thursday, November 20, 2008
Maxine
I got these new cartoons today, and for some reason they really strike a cord with me right now! LOL
Pennies For Bella
Please, all who are able and moved to do so, give to Bella’s family! Even if it’s only a few dollars and cents, it all adds up. Each contribution is significant.
Friday, November 14, 2008
DAY -28
HAPPY HAPPY JOY JOY
HAPPY HAPPY JOY JOY
HAPPY HAPPY JOY JOY
HAPPY HAPPY HAPPY JOY!
Ok. I'm done being silly.......for now. I just feel so excited. I've been anxious to post this, but wanted to let E put the news on her own blog first. It's only right. LOL
So, we have an official schedule now! Woo Hoo! Today is Day -28. 28 days till Bella-Bean's life-saving transplant! This is the kind of countdown I can handle! December 12, 2008 is officially T-Day!
Please join me in praying that the chemo goes smoothly with no problems, and for a 100% engraftment of the donor cells.
Thursday, November 13, 2008
Autumn Sunshine
Monday, November 10, 2008
Daddy Days...


Wednesday, November 5, 2008
Lions and Voters and Prayers, Oh My!
Friday, October 31, 2008
HAPPY HALLOWEEN!
I won’t tell you yet what we are dressing up as. J will be a lion. I can tell you that much because it’s been common knowledge for a while. But mom has been driving K-bug crazy by being enigmatic about her costume. It’s been great fun.
First she called up and asked if they were going to town could they please pick her up a witch hat. They said, “ooohh, you’re going to be a witch?” No. Ha Ha. Then she said she also needed a cardboard box. A really big one. But then after she and I talked some more, she decided not to use the cardboard box after all, and instead asked if they had any safety pins. Then later on she went by and borrowed a sock and a bra from K-bug. It is safe to say we have her completely baffled. And we are loving every minute of it. When we get all done I will post pictures and see who can figure it out!
Also wanted to say a great big HAPPY BIRTHDAY to my Daddy. Explains a lot, doesn’t it?
Friday, October 24, 2008
How Great Thou Art
O Lord my God, When I in awesome wonder,
When through the woods, and forest glades I wander,
Then sings my soul, My Saviour God, to Thee,
And when I think, that God, His Son not sparing;
Then sings my soul, My Saviour God, to Thee,
When Christ shall come, with shout of acclamation,
Then sings my soul, My Saviour God, to Thee,
Monday, October 20, 2008
My horrible Sunday night!
I heated him up some spaghetti oh’s and sat him in his chair. He had maybe six bites and was telling me he was “all done.” I tried several things to get him to eat, but he is just not eating much at all lately. Anyway, he eventually got down from his chair without having eaten very much. I left the bowl of spaghetti-oh’s on the table thinking that I would try again later, and if he didn’t eat them I would save them for another time. I got back to work on supper. I was making twice baked potatoes, steak and broccoli. J was playing happily and R was watching another movie. Right in the middle of spooning the filling back into the potatoes I hear a very wet plopping sort of sound. I turn my head and see J-man absconding with the bowl of spaghetti-oh’s, and a huge pool of tomato sauce and noodles on my dining room carpet. I ran to stop him from going any further and in trying to get away from me he waved his little arms in the air, flinging about two more huge pools of round pasta and red sauce on the floor. I grabbed him and looked up at R with a “help me” expression on my face. J had spaghetti-oh’s in his hair and on his hands and clothes. R said, “I’ll get the shop vac.” I took J to the sink and began to get him cleaned up. Of course, once he was clean all he wanted to do was go stomping through his fresh new puddles. I was restraining him and he was telling me what he thought of that in no uncertain terms.
R asked me if I knew where an extension cord was. I went down the hall and when I went to turn on the light, I accidentally flipped the wrong switch, cutting the power to the TV and DVD player, and loosing R’s place in the movie. R began to suck up spaghetti oh’s while I was holding a screaming wriggly toddler. He got about halfway done and I looked up into my living room to see that the whole house had filled with a fine dust from the shop vac. Sort of a mix of dirt and sawdust. Nice and aromatic. NOT! (cough, cough.) I got his attention and told him he was filling the house with dust. He got an annoyed expression on his face, but went ahead and sucked up the rest, then tossed the shop vac into the garage in aggravation.
I was finally able to let J go run around, and R got a rag and cleaned the tomato sauce out of the carpet, as I got back to work on supper. By this time R’s annoyance level has reached caution level. He takes the DVD out of the player and puts it away. He’s resigned to the fact that he won’t see any movie in it’s entirety tonight. He settles into his chair with a book. I put the potatoes and steaks into the oven with the broiler on.
ENTER STUPIDITY FACTOR 12!!!
A little background interjection here. J-man, in all his independent toddler-y-ness, has learned to open the oven door. He usually only does this when I am cooking, since seeing me open the door and put something inside reminds him that, hey, this is something to play with! So, for a month or two now, I have been in the habit of flipping over the latch for the self cleaning function of the stove in order to keep J from being able to open it while it’s hot. I *thought* that would engage some sort of cycle that prevented you from opening the oven again, but that had not happened the first time or two that I tried this trick, so I concluded that either it didn’t work this way, or mine was broken. Either way, for me and my little oven, using the cleaning latch was an effective toddler safety tool.
Till last night…..
My first timer went off and I pulled on the latch and it wouldn’t move. (hmmmm) Perhaps it’s stuck. (jiggle jiggle jiggle) Maybe you have to turn off the oven before it will come undone. (turn off oven. no problem.) It still won’t budge. (your steaks are burning) Try harder. Voila! The latch moves. But not all the way over. (uh oh) I move it back. But not all the way over. (crap) Push, tug, push, tug. Oven still locked. (expletive, expletive, EXPLATIVE!!!) Deep breaths. You’re going to have to get R. (I can’t do that.) You have no choice. (He’s already annoyed.) The food will be ruined. (The food hell, the OVEN is ruined!) Call R in here. You know you are not going to get this open. I think you’ve bent the lever. (do you know how stupid that is?) Yeah, but it’s even stupider not to fess up. (I’m such a moron.) It’s ok. He’ll be able to get it open and he’ll laugh at you, but it’s ok. (sigh) “Honey……can you come here please?”
And guess what? HE COULDN’T GET IT OPEN EITHER!!! He wrestled with it quite a bit and concluded that it was not going to open. Yep, I’d bent the lever. I sat on the kitchen floor in despair. He went outside for a smoke. His annoyance factor had now reached critical mass. I’m sitting on the floor crying. I’ve ruined supper. I’ve ruined my oven. OH, GOD, I’VE RUINED MY STOVE! I can’t get that food out of there. The meat is just going to rot and stink and get full of bugs. I can’t afford a new stove.
Enter sweet J-man. He comes up to me and loves on me and talks to me. I take him in the living room and change his diaper and play with him. Crying intermittently all the while. Finally, he goes off playing on his own. I set my jaw. I wipe my eyes. I am determined. I WILL wrestle the hell out of that oven. It will NOT defeat me! (after all, I can’t jack it up any more than it’s already jacked up.)
I can’t even tell you what I did. I pushed and pulled and shoved and heaved and finally to the lever to move, but the door would still not open. Eventually, and I have no idea how, I got the door open. There inside sat the most beautiful golden topped twice baked potatoes, and some nice steaks. They were not burned. I pulled them out, flipped the steaks over and put the steaks back in and turned the broiler on.
The oven door will not close all the way. At this point, I do not care. I get the steaks done and cook up some broccoli. I go and put J to bed. Then I serve up our nice romantic (choke) steak dinner. R and I sit in silence most of the way through the meal. Then he notices the oven door. He asks me why the door is open. “It won’t close because the lever can’t go all the way over from the way it’s bent. I’m going to have to take a BFH to the latch.” He just shakes his head.
Later we settle in to watch the rest of the movie we started earlier. We get through about another hour before both our eyelids are getting heavy. We go on to bed. About 45 minutes later J wakes up crying. To make that incredibly long story short, J finally fell asleep about two and a half hours later. By that time I was so wide awake that I just stayed up and finished the movie.
All in all it was NOT a good Sunday. I’m sure I’ll look back on it all and laugh…..
Someday.
So long, Grandpa M......
Grandpa M became my Grandpa in November of 1996, when his daughter married my dad. He and Grandma welcomed me into the family wholeheartedly, and have never treated me any differently than the grandkids they knew from birth. Grandpa was a classic ornery old man, and always entertaining. He loved to play games and tell jokes and act silly. I will miss him very much.
I moved back “home” in May of 06. We lost my Grandpa W that June. Grandpa C left us in March of this year, followed by Grandpa G in April. Now, in October, Grandpa M has gone, and I now have no living grandpas. I am trying not to dwell on that unpleasant thought, and instead to remember how very blessed I have been to have four wonderful grandpas in my life for as long as I did. Not many people can say that. So, since I moved back here just 30 months ago, this will be my sixth funeral of a family member, and the fourth one this year. Each time I have said “I am done” with funerals. I can’t handle anymore. I hope this time God is listening, because I’m not sure I could take loosing anyone else.
Wednesday, October 8, 2008
The Big Sale, part 3....The Final Count
Friday, October 3, 2008
The Big Sale, part 2


Today has been busy also. J and I got up this morning and took a bath together. It is most interesting trying to get this done alone, since R went over the road and is not home much anymore. Then we stopped in at the Kwik Shop, where the ladies fawned over J as usual. They just love to spoil him there, and he eats it up and flirts up a storm. Then it was back over to mom's house to work on the sale some more. After J laid down for his nap, I went back to the Kwik Shop for drinks and then stopped in to see my old buddy Sav, who was my high school history teacher. We had a nice long chat. He is just the coolest guy. I told him about Bella and about our sale and he went to the back of his shop and got out a little decorative wood wheelbarrow with hearts for the sides. He donated it to the Bella sale. Just such a great guy.
As soon as I got back to mom's we got a call from Uncle P. He needed me to run him down main street for an errand. So we went and did that, and had quite a nice chat along the way. I really love my uncle P, and value his insight. He's awesome. Can't begin to tell you what it means to me to have them back living near us again! Background: The McC's are a family that have been friends with my family since I was about J's age or so. My nicknames for them are Uncle P and Momma C. Thier oldest daughter grew up with me in her daily life for the first four years and always called me "Sissy," so I call her my little sister. Thier younger daughter came along after I was grown and we didn't live near each other anymore, so the "Sissy" thing didn't catch on with her. But several years ago she asked her parents to make me her god-mother. So, all in one family I have a mom, an uncle, a sister and a god-daughter. Sounds like we come from Arkansas, but I promise it's not like that!
So then we all had lunch together and I went outside to sort and price some items for the sale. We have borrowed two large hay trailers for the sale, and I have about half of one priced and arranged. Lots of work to go, and more baking and cooking. But we will get it done. I'll be pretty busy tomorrow, but I'll try to post againg tomorrow night or Sunday and let you know how it went, and post some pictures. Me and J and Grams are having a sleepover with Mom tonight. I am really looking forward to that.
Wish us luck! Thanks for keeping up with me!
Thursday, October 2, 2008
The Big Sale, part 1
I took today and tomorrow off work so that I could help my mom get ready for the sale. We are having it at my mom's house, as she has a better location for it. This morning Momma C came over to keep J-man while mom and I went over to Grams' house to load up some of her stuff for the sale. We got a Durrango full and a Jeep full! Then when we got home, Grams kept J-man while mom and I unloaded the vehicles and mom and dad went to pick up the trailers we are borrowing for the sale. We did a lot of lifting and shoving and cleaning.
Tonight will be full of sorting and pricing. Mom and Dad went back to Grams' to get some more stuff in the pickup. Tomorrow will be more sorting, pricing, setting up, and cooking!! The whole house will be smelling like cinnamon rolls all day, YUMMM!!! Tomorrow night me and J and Grams will be spending the night with Mom. I imagine Mom and I will be up most of the night getting the last of things done. That's how she and I both tend to be, and when we are together it compounds the effect. We always say we do our best work under pressure. But Dad and R just say we procrastinate. They are pessimists. Don't listen to them!
I promise to take lots of pictures throughout the process to share with you. I hope we have a great turnout. I made up some brochures about Bella and Hurlers with lots of information and suggestions of what people can do to help. There is a picture of Bella on the front and she is just so adorable. That girl just melts my heart into a pool of goo! Yeah, I know. Nice visual.
Well, I hear my baby boy waking from his nap, so it is time for me to head on home and keep working. I'm going to have to go back to work Monday just to get some rest! But it's all more than worth it. So I will see you all later. Thanks for taking a peek into my little world.
Wednesday, October 1, 2008
Bad Mommy, No Big Mac!

Sunday, September 28, 2008
The Good Old Days...
HOW TO PRESERVE A HUSBAND
Be careful in your selection. Do not choose too young. When once selected, give your entie thought to preparation for domestic use. Some insist on keeping them in a pickle, others are constantly getting them in hot water. This makes them sour, hard and somethimes bitter. Even poor varieties may be made sweet, tender and good by garnishing them with patience, well sweetened with love and seasoned with kisses. Wrap them in a mantle of charity. Keep warm with a steady fire of domestic devotion and serve with peaches and cream. Thus prepared, they will keep for years.
I found the following excertpts in a Better Homes and Gardens Nutrition guide for the family copyrighted in 1961:
Overweight can come from big muscles, but it's improbably. A scientist could weigh you under water to find out. Fat is lighter than lean muscle and fat people float like cream in a milk bottle.
Stand erect. Bend your neck until your chin rests on your chest. Look straight down. The view of your toes should not be blocked by "bay window."
Are those hilarious or what? We sat in the kitchen and rolled laughing. We are having a good time enjoying each other's company today, and J-man is in heaven having his Mommy, Gammo, and Grams to play with all at the same time.
So the three of us spent the last several days soaking up as much togetherness as we could. R and I went on a date together yesterday. It was a blast. J has relly enjoyed having his daddy home the last several days, and I'm sure he will miss that fun and attention. Not to mention I will have to be giving all of the baths now, as that used to be daddy and J's special time together.
Wednesday, September 10, 2008
STORM THE GATES!!!
1. Bella's first ERT (enzyme replacement therapy) is scheduled for tomorrow morning. Please pray for its success, and for no adverse reactions to the treatment. Successful ERT can halt the damage to Bella's organs and bones.
2. Bella's parents are petitioning their insurance company to allow them to have her transplant done at the UM hospital, which is not officially covered in their plan. The hospital that is covered has very little experience with Hurler's, while the UM has tons, and its doctor studied at Duke, where most of the breakthroughs in Hurlers treatment were made. Please pray that the the insurance company accepts the pettition.
3. Please pray for healing and restoration in the relationships between Bella's parents and some of their family members. This is a time when they will need their family more than ever, and with tensions high, and nerves on edge, there has sadly been some damage to some of those relationships.
Thursday, September 4, 2008
Super Duper Weekend with Big Bird!
Big Bird’s health is not too good, and she probably should not have made the trip, as it is very hard on her. We were glad to see her, but I think we need to try harder to go in her direction in the future, as opposed to having her come here. She had quite a bit more trouble during her visit than she wanted to let on. But we had a blast, and loved her up. She is my favorite photographer, and she captured these beautiful moments with J while she was here. Eat you heart out, Anne Geddes!
Friday, August 29, 2008
Princess Bella

This disease is progressive, devastating and deadly. Children who have it rarely live 10 years, and are faced with many of the following symptoms:
Stiffened joints
Skeletal malformations
Heart disease
Recurrent upper airway infections
Lung disease
Corneal clouding, eventually leading to blindness
Frequent ear infections and hearing loss
Delayed mental development and progressively worsening mental retardation
Hydrocephalus (fluid on the brain)
and many more…..
Currently the only treatment for the disease that shows any promise is either a cord blood transplant or a bone marrow transplant. My friend is now in the process of having her daughter evaluated for a possible transplant candidate.
In honor of sweet Bella, I am asking anyone who reads this to go to this website: http://marrow.org/ , and register to be a marrow donor. If you cannot donate or do not wish to donate marrow, please consider a monetary donation to help offset the costs of tissue typing for others who donate. There is also information on this site about donating umbilical cord blood when your baby is born. These can be lifesaving gifts!