Wednesday, August 24, 2011

How do I say thank you?

Around this time last year I took Abigail potty one day and noticed a dark area on her right leg. I immediately asked Jason if he had ever noticed it before and he said he wasn't sure. So I filed it away under 'things to keep an eye on.' And keep an eye I did. When a small mass turned up underneath the area I felt like I knew what we were dealing with. And when we started seeing pain and itching, I knew before we ever even made that drive to have an MRI done that there was a tumor in my daughter's leg. This is the nature of NF.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.


video

The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)

Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.

Tuesday, August 16, 2011

99 cents and a smile.

Abigail and I ran errands today. One of our stops was the Goodwill. I make Abigail a shirt every year with the number of her birthday on it. I browsed through the shirts looking for something plain in her size. A few feet away there was a whole pile of hats. Baseball hats, straw hats, a sombrero, baby sun hats, and on and on. Abigail tried really hard to stay with me, but I could tell that the shelf was beckoning her. So as I finished, we walked over.
She picked up a few hats and looked them over. I had no plans of getting her one. Just to indulge her curiosity and let her enjoy them for a few moments; until she found the red one that is. 'Mama. Wook at dis hat. I yub dis wed hat. It's budiful.' She never asked for it. But oh, how her little face lit up! Being the sucker great Mama I am I told her we could buy it. After all, it was only 99 cents.




(while I would have preferred a hat picture from another angle, this was how Abigail wanted me to take it)
So she put it on and beamed as we walked through the store to pay. One of the woman working there saw her and smiled great big, 'Don't you just look adorable.' Abigail stopped in her tracks and wrinkled her face up. She sort of huffed and then proclaimed, 'I NOT howwible.' The woman and I stood there laughing with tears running down our cheeks as I tried to explain that she had said 'adorable' not 'horrible.'

We finished our shopping and went on to the next store. Every last penny of that 99 cents was made worth it while we were shopping there. Abigail danced through the store singing a song about her red hat. She found a mirror and stood in front of it dancing, singing, and watching herself in her fun new find. She giggled uncontrollably as she walked by displays and the brim of her hat bumped into things. The joy of having this wonderful new hat just exuded from every part of her little body. It couldn't be contained, and dancing, singing, jumping, wiggling, giggling, and running had to take place. All of her joy spilled over onto others as well. A grumpy older couple angrily discussing what type of juice to buy both smiled and watched her, whispering to each other about how cute she looked. The man slouching on a bench waiting on his wife to get done shopping sat up and watched her with a smile across his face.



This 99 cent item that I decided to indulge my little girl with brought a smile to everyone's face who saw it. I would say that in a world where pain, sorrow, hatred, and bitterness run ramped; I paid very little to bring joy not only to a little girl (and myself) but to lots of other shoppers who were reminded how to enjoy simple things. Next time we go shopping I think I'll encourage Abigail to wear her red hat.


P.S. Red hats, when not upon a head, double well as a drum for singing along with 'Nothing but the Blood of Jesus....'

Wednesday, August 10, 2011

letting go.....

My daughter is almost three...like less than a month away almost three. It's crazy unreal and I'm pretty sure someone time warped us because just last night I was snuggling a six pound, round, little butterball against me while she slept soundly making sweet newborn noises. But what am I going to do? Ask who time warped us and tell them to fix it? People already think I'm crazy as I buckle imaginary things into the back of my car and tell pig to obey while we are at the store. The time warp questions would definitely get me sent away for good.

So instead I try to embrace this upcoming title change from 'toddler' to 'preschooler'. In so doing I am trying to encourage some more independence. This my friends has caused me to have to keep my face from physically contorting in pain while Abigail is watching.
Our first new skill we are working on is making her own bed. It's actually somewhat difficult because the blankets go between the mattress and her bed frame. When she gets done she proudly announces, 'Mama I diyit!' Oh, and she did do it. Never mind the fact that the sheet is still folded in half under the comforter, the comforter is on at an angle, and there is not once smooth place on the whole damn bed. She did it herself and I'm proudly smiling through the urge to pull all the blankets off and redo it.
There are many other things that are painful for me to watch or have to wait for. I am a firm believer in letting kids do things themselves. Nothing has to be perfect, they will get better with time. This belief really applies more to other people though who are asking for advice. Instead I am filled with the desire to make things not look like they were done by a three year old. I must let go. Sometimes I will not get to leave the exact moment I wanted to because Abigail wants to put her shoes on herself. Other days I get Abigail's hair just so and she tells me she would like to wear a headband as well. So I sigh and remember that it's just hair, and she is learning about who she is, and trying to live that.
And for the first time ever today I let Abigail completely pick out her outfit (well almost completely. She picked out a vest and I did not let her wear it with nothing underneath like she wanted. She also picked out her bike helmet, but it was not allowed to be worn either). I usually lay out a few pair of shorts and then when she picks one, choose a few shirts that would match. I know though that she is old enough to make these choices when it doesn't matter. So she chose her outfit. We went grocery shopping in it. She ran happily along in the store yelling for pig and elephant to 'get back hew.' I kept my head up and smiled at the by passers who were gawking at our family didn't even notice us and just kept reminding myself that I was teaching my daughter that she is allowed to be her own person. She doesn't have to match, be in style, or impress others with her clothing. All she has to do is continue to be her really awesome self and people will like her. I still do. And wouldn't you know she still got told how cute she was tonight. Without further ado, a picture of her outfit sans accessories...

Added to this look were some flamingo pink socks, bright pink patent leather mary janes (which Abigail refers to as her 'shiny shoes') and a purple and white flowered hat. If you are wondering if there might be a though process in these pants and shirt 'matching,' there is not. 'I yike dese pants wif da fwowers. I yike dis best wif da snowfwakes yike winter.' Yes her goal is not to match at this point, but to wear as many things that she likes as possible all at the same time. And my goal is to continue to allow her to be who she is.



Letting go,

Sunday, August 7, 2011

2 days and counting...

It might surprise all of you, but Abigail can be a bit of a stinker sometimes. I mean overall she is an incredibly easy toddler. But she has a few choice areas where she is determined to do what she wants when she wants to regardless of the consequences.
One of our biggest struggles is in regards to touching the computer. She is not allowed to. But come hell or high water, if I walk out of the room, she will climb up and begin typing and pushing buttons. And the scenario is the same EVERY. SINGLE. TIME.
I walk in the room. She jumps down quickly, running the other way and proclaiming, 'no touch the computer.' We go through the 'did you touch the computer?' 'What happens when you touch the computer?'
And then she walks in the bathroom with a smile still widely spread across her face telling me how she was typing or texting Papa. I tell her I don't care what her reasons are for touching it, it is not allowed. She gets spanked...and cries. She apologizes and we reconcile. I then go through why she can't touch the computer and remind her she has now lost television watching, and computer fun (starfall, looking at pictures, etc.) for that day. She is devastated. I could win money if I bet on it, that she will get spanked for the same thing within a few hours. This happens multiple times a day.
Over the last week it had gotten much worse. I was doing everything I could think of to prevent it, correct it, and praise her when she didn't touch it. I would remind her first thing in the morning that the computer was not allowed to be touched. I would ask her multiple times though out the day what she wasn't allowed to touch. I would remind her that she had a computer of her own that she was more than welcome to play with, type on, or jump up and down on if she wanted to. I still ended up spanking. I was growing weary and running out of ideas.
We have also recently started a responsibility chart with stickers. One of her stickers is for obeying Mama and Papa. She tends to be highly motivated by praise, stickers, clapping, making up songs, just any form of verbal and visual reminder of the good things she's done. She also knew for each sticker she got she would get 'monies' (a penny a piece). Nothing was going to stop this little computer lover from playing with it. NOTHING.
I was literally ready to start researching more creative consequences because I was at my wits end. And then it happened. She went a whole day without touching the computer. So yesterday every chance I got I would remind her, 'Wow you are doing so great today. You haven't touched the computer at all. You are such a big girl. You are doing such a good job obeying. If you keep it up you will get a sticker, and we can watch a video while you get ready for bed.' ...and wouldn't you know it, today got us the same results. Two whole days without touching the computer. Two whole days where I fall into bed without feeling completely defeated by my inability as a parent to teach my daughter right from wrong (in regards to the computer). Two whole days without having to spank my daughter. *Sigh*
Now I'm not sure that we won't ever be back where we were, but by God we have made progress. And I'm going to celebrate that progress. Every parent knows that you celebrate the wins when you can because tomorrow is a new day where my sweet little girly may find some other thing to fixate on and bring me to a place of tears for fighting the same battle over and over.

Celebrating day 2,

Thursday, August 4, 2011

I do my daughter's hair.

I have been enjoying reading a lot lately about natural hair care, and some other products that are available. Mostly I've been hanging out on Beads, Braids, and Beyond's website and facebook page. It's been encouraging and I've learned a few new styles that I've been trying out on my little bug's hair.

I really love doing my daughter's hair. I think it is beautiful, and would gladly trade my straight hair for her kinky curls. I don't want her hair to be straight. I don't need it to be smooth. I love it just the way it is. And honestly, I am really good at doing her hair. I know how to braid, cornrow, twist, flat twist, and do fun designs with cornrows and parts.

But over and over this same scenario plays out. Abigail and I will be out somewhere together. A black woman will approach us and go on and on about how cute Abigail's hair looks. I smile and tell Abigail to say thank you. Sometimes that is the whole conversation. But without fail if the statement is followed with the question, 'who does her hair for you?' I get ready to defend. Almost every time I respond with 'me' I get a statement about her hair being dry, her edges being rough, and am then recommended some product (grease) to use on her hair.

If my daughter's hair was dry this might feel like someone trying to help me out. The problem is I have black friends, and even her birth mom, who tell me how great her hair always looks, how healthy, soft, shiny, and on and on. Every time I've been told that it's dry I have gone back and asked the same friend to please tell me the truth if it really is dry. Every time she tells me it's not dry and they are just being haters.

Do you know how frustrating it is to spend hours upon hours doing your child's hair (sometimes four or five hours for one style) just to have someone shoot it down because you are white and can't possibly know how to take care of a black child's hair. Or to have those same people tell you that you should start straightening it or perming (i.e. chemically straighten) it so it's easier to deal with?

I had come to a place where I didn't know if there were any black people out there who even liked their own hair, or natural hair in general. And in came the blog I mentioned above, as well as the facebook page. There are TONS of moms who love their children's natural hair, are growing their processed hair out and letting it go back to natural, and who have natural hair themselves. I feel like I have a place where I can ask questions to people who appreciate natural hair (and hair care products) as much as I do. I mean why would I want to change this little girl's awesome hair?

So here's a big thank you to Beads, Braids, and Beyond to renewing my love for my daughter's hair and letting me know that I'm not alone.


Staying natural,

Tuesday, August 2, 2011

That moment.

I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.
Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'

But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.

In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.

So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.

Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.

I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.

I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.

In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!


Enjoying seeing things from a different view,

Let the little children come to me...

I am going to share with you the words Abigail prayed at dinner the other night. Jason and I were stifling laughter and she squeezed her eyes shut and thanked the Lord. (I'll give you the Abigail version and the interpret for those who may need it).

Jeyuh,
Sank you fow Abigail. Sank you fow Mama. Sank you fow Papa. Sank you fow my gina. Sank you fow my cheek. Sank you fow helping my mouf not huwt. Sank you fow Mama's wing. Sank you fow Papa's wing. Sank you fow dis big sing of food Mama made. In Jeyuh name, Amen.

Jesus,
Thank you for Abigail. Thank you for Mama. Thank you for Papa. Thank you for my vagina. Thank you for my cheek. Thank you for helping my mouth not hurt. Thank you for Mama's ring. Thank you for Papa's ring. Thank you for this big thing of food Mama made. In Jesus name, Amen.

Not certain why the chicken le blanc we had for dinner that night made her think of her vagina, and be thankful for it, but who am I to hinder my little one from going to Jesus with her thoughts.

Laughing a lot,