Friday, August 28, 2009

a gushy mom blog

All right. I have wanted to do this for a few weeks, but have sustained until now. I am going to spend this blog going on and on about all the awesome things Abigail does. This disclaimer means that if you aren't up for reading gushy parent talk you should close this window now and walk away.

Abigail will be one on September 2 (next Wednesday). Even though I have been involved in probably somewhere close to a hundred kids first year of life, I am still always amazed when I look back at how much has changed. Abigail was born and could do nothing for herself. She cried, took nourishment, excreted waste, and slept. We loved it; have lots of pictures of those days of a snoozy baby and parent on the couch together.

Somewhere over the next few months she started to roll from belly to back and gained a more stable neck (she was never very floppy like some babies are). She started to smile at us and make noises other than cries. She stopped getting swaddled to sleep and began sucking her thumb.

Between four and eight months she started to roll the other way (and wake up screaming because she was on her belly) eat "solids" sit alone, laugh out loud, play with toys, and make lots more noises. By the end of this period she was sleeping 12 hours at night, taking two daytime naps of a couple hours, and we were settling in to life with a child.

The last four months have been huge. She can crawl at the speed of light, eat toilet paper, along with actual solid food, clap, say words, stand, take off her diaper in her bed, eat grass, give kisses, make animal noises, wave, do numerous signs, and has teeth.

So I'll brag a little more because her vocabulary is amazing to me. Some kids are walking at this age and this is the question everyone ask when I'm out with her "does she walk yet." No, but she can tell me what she wants/needs using words and signs without whining or throwing a fit. So here is a list of what I can remember right now that she can say: mama, dada, dog (dawdawdawdawdaw), nigh nigh, all done, more, tree, milk and drink. Pretty great huh. The signs are even more impressive: more, please, thank you, no thank you, all done, up please, bird, music, fan, eat, drink, book, train, bye bye, brush teeth, amen and down please. I think this is it. We are working on bed/nigh nigh, but she still waves for this (although I still know what she wants). She also can make the sound of a pig (our favorite), dog, duck, and cat. I mean seriously, who cares if she can walk yet?

It is amazing how a year ago I was scrambling around when she would cry trying to figure out what she wanted. The other night at supper she made a pig noise and did the sign for book. She wanted to read "The Very Busy Spider." This is amazing to me. On the other hand Jason was cutting up strawberries one evening and she wanted some so she signed, "more, thank you, book." Which were all done frantically because she wanted some strawberries and didn't know why she had to wait!! I guess it counts because we still knew what she wanted, and she made us laugh.

Some of our other favorite things about her are how snugly she is. She likes to be held, and give hugs and kisses; big open mouth slobbery kisses that somehow get some teeth in them too! She tries to share her food and toys, she can drink out of a big girl cup all by herself (not a sippy, a real cup), she knows that not obeying "no touch" will get her a hand spank and indicates this by putting one hand on top of the other when someone says "no touch." She knows that if I tell her no fits she should stop fighting me (usually on the diaper change). She knows where the dogs cages are and crawls to them to yell dawdawdaw, make a barking noise and give them big open mouth kisses. She loves to brush her teeth, and will request her toothbrush by crawling to the bathroom door and signing toothbrush a few times a day (and I oblige because it's a good thing to do). She has to kiss the picture of tummy mommy and sister Sarah before bed every night. When Jason gets home from work and she sees him walking up she SCREAMS in excitement (which makes his day, and I love as well). She doesn't respond to the people in the store who want her to wave, talk, or blow kisses to them (I know this sounds mean, but I like this about her personality). She loves music, playing "drums," shaking percussion instruments, and playing the piano. My favorite thing of all though is that she is our daughter and we get the opportunity to parent this amazing, intelligent, beautiful, little being.

Done going on and on,

Thursday, August 27, 2009

Who am I anyway?

I need the dreams to stop. The dream I had last night is still causing me anxiety. So much so that I can't bring myself to share it with anyone else.

I have been spending time doing research lately. As we approach her appointment I feel like I need to go in knowing as much as I can about nf. The last time we went to Riley I was blindsided and don't remember much of what the doctor said. I want to make sure I know enough that when I go in I can hear what they are saying; none of it will be a surprise.

I also want to have all of the right questions. I think if I miss a question the doctor might miss something really important going on with Abigail. After all he only specializes in nf....I specialize in Abigail. Jason continues to remind me that I need to trust the doctors. I think in theory I do trust them, but I also know that they see so many patients that it would be easy to see her as a patient and not my baby bug.

I'm trying to balance all of this in my head with Abigail's upcoming first birthday and party, my sister's wedding, my husband's thirtieth birthday, and holidays in the not far future. I am excited about all of the joyful events coming up. I just have felt like when I'm making appointments I need to make sure that they are not too close to any of these events. The day we found out was the day after my birthday and right before my first Mother's Day. We didn't tell anybody until after because we wanted to try to celebrate. I want to celebrate all of the joyful events in our future.

I think I recently realized that I just feel overwhelmed and unsure of my "identity." I don't mean like I'm in high school again trying to get people to like me. I mean in the last year my identity has gone to mother, mother of an adopted child, mother of a child of another race, mother of a child with a genetic disorder. I don't know who I identify with anymore. It's not that I think I have it harder or easier than anyone else. It's just truly that with all of these labels; I begin to wonder which group our family would fit in should we choose to join one. I doubt there is a group of adoptive parents of children of another race with neurofibromatosis 1. If there is the meeting would be great. Stories of horrible things people say, doctors appointments, and crazy poops.

Hopefully, although some of these labels make parenting much different than most experience, I will settle in to this in the next few months. Because I am thankful for every aspect of my daughter. I love having a daughter, of another race, that we adopted, and found out she has a genetic disorder. Might sound crazy, but when you wait three years on the baby God has told you He is going to bring, even the REALLY hard things feel a little more peaceful.

Figuring out who I am,

Tuesday, August 18, 2009

Pictures of the former "dream club" being demolished to build a community center!
Home. The place where we go for rest, solitude, and to get refreshed at the end of the day. It's the place where I spend the majority of my time. I like it here. Most days. There is definitely some days that the choice to move into an "at-risk" (poor) neighborhood to do Christian community development seems stupid. Yes that's right stupid. When I'm sitting and eating dinner and the girl outside is screaming the f word at her boyfriend two blocks away I don't feel refreshed.

None the less here I am. Our four years of living here have been defined by numerous events. Our house was infested with bats. Although this wasn't a single event I have made it one in my head. We had bats at least once a week. Sometimes we woke up to them; sometimes we came home from Wednesday night church to one in the living room. It became some what funny (probably to keep from crying) to take the rackets to bed and leave them by the door when we left.

There was also the one random squirrel that got into our house. I woke up to a noise, thought someone was in our home and long story short, it was a squirrel. I called Jason and told him he had to come home from work. It was probably the most irrational I have ever been. There were squirrel footprints on my counter, and clean dishes, and windows, and walls. I refused to clean for a few days...and wasn't sure if I could handle any more animals.

We have had mice, cockroaches and ants. Every project we have undertaken has been hundreds of dollars more expensive than we planned for and has taken quite a bit longer than originally planned. We have invested in numerous people's lives who have moved and we have never seen them again. It is HARD living here!!

However in the past four years there have been enough glimmers of hope that I am glad we live here. We have seen people come out of addiction. Our church helped close a strip club that was actually a front for a prostitution/drug ring, and is now tearing down that building to build a community center. We are watching children begin to break the cycles of poverty. We are learning how to live in true community.

We have been here long enough that we know the people who live around us and their stories. This is one of my favorite things. The children I nannied for, for two years at my house knew the people who came by most of the time. They said hi to Jack and Jerry. They would talk to the people who came by everyday. I look forward to Abigail learning their names and talking to them. I also love that we have met new people because of her. They all call her little mama. I don't know why but it is endearing to me none the less.

I like that our daughter will not grow up being afraid of people who look homeless or different than us. Instead she will know that they have a story and need to be loved like everyone else. We will of course teach her about strangers and being safe, but she will at least not just see them as "bad people."

So despite the fact that the guys next door have been on the porch next door drinking since 7 this morning, and are still there at 8:30 at night, I am going to try to remember that home not feeling refreshing all the time is worth the choice to live here. All I have to think of is a man who used to live by us. He still rides his bike by to say hello. You see his mom died a few years ago and we went to her viewing. This is actually a typical response where I'm from. When someone you know loses someone they love you go to the funeral home to be supportive. Apparently he has never experienced anything like this. Whenever he is really drunk and comes by he tears up still and thanks us. It has been over two years now and this still means the world to him. And I would rather have this man know that someone loves and cares for him than to live in comfort!

Loving living in "the ghetto",

Friday, August 14, 2009


Abigail with her first beads....and mama did them all by herself!!

Oh parenting. This feeling of immense love, fear, and joy all at the same time. I was actually confident in my ability to care for children before we had one. Looking back it seems silly. I remember coming home with Abigail and feeling like I lost all knowledge of caring for children. Every person who came to visit or looked at me when I was in public with my baby, I was certain was judging my parenting. I sometimes would explain things to people that I really didn't need to. Then there is the fact that infants can't tell you what they want or need. So despite my best efforts sometimes Abigail had to cry because I didn't know what was wrong.

As we approach her first birthday some of this has faded. There are still days I don't know what it wrong and she just has to fuss. There are also still times I think people might be judging my parenting. However the past year has taught me some things. As I watch my friends parent I feel way less judgemental. I might not want to do things like they do, but I know they want what is best for their children and are doing what they believe is best. I am trying to offer less unsolicited advise. I find when I get it I often have to walk away and remind myself that whomever has given me the advice does not know me or my child as well as I do.

The best thing for me has been a new understanding of God. Now I'm not going to claim to know everything about God or His character. There have just been a few things that have stood out to me once I became a parent that parallel who God is.

First of all in the old testament there seem to be times where God "changes His mind." I have always been slightly baffled at how one moment He is going to kill everyone and the next He has mercy and does something different. As my daughter has started to push boundaries and touch things she shouldn't I have found myself saying "no touch, mommy will spank your hand," and not always doing it. It's not because she doesn't need her hand spanked. It's because I love her, don't actually want to have to spank her, and decide to do something different.

This has also helped me to accept that God knows what is best. When I tell Abigail no touch to the plug ins I know what the future holds if she chooses to disobey. I don't tell her no because I want control, or want to keep her from having fun. I do it because I don't want her to get hurt. As we all know she could probably play with the plugs hundreds of times without actually being injured, but there is enough of a possibility that I want to make sure she doesn't get hurt. There are lots of perimeters that God sets up like this. He says don't do this. You might get away with it the first hundred times, but it could eventually cause you harm. He knows what the future holds and is trying to keep us from "getting shocked."

I think I also just understand the role of "daddy" more. I have a father on earth. However he does not feel about me the way Jason feels about Abigail. When I watch them together my heart is full. Jason loves Abigail and no matter what she does in the future, will always love her. Abigail also can't wait until he gets home and immediately says up please. It has helped me to realize how much God loves me as His daughter, when I see Jason interact with our daughter.

I had a friend ask recently, "How do you reconnect with God after being away for a while." I immediately thought about our daughter. If Abigail decided to turn away from us some day I would be eagerly awaiting the day of her return. I would not scold her when she came home. I would run to her and embrace her and tell her how much I missed her and am glad to see her again. We would need to talk about things somewhere down the road, but my initial reaction would be celebration and embracing her. I told my friend this. If you have been away from God or haven't connected well in a while God is not eagerly awaiting the moment He can smite you. He's actually sitting at home waiting to hear you come through the door. He can't wait until you come back!!

I truly love being a mommy and believe that children are a blessing just like the Bible says. Abigail brings us so much joy. She without ever knowing it also challenges me to be a better person.

Grateful for the blessing of a child,

Tuesday, August 11, 2009

A medical update

I don't even know how to start this entry. I am overwhelmed right now. I am finding that every time Abigail goes to the doctor I am waking up the night before thinking about nf. I had another dream about it last night. People kept asking me questions and I had to give all these answers about what it is and what it can do. Once again a horrible reminder of all the things that could go wrong for our daughter. I was awake for about an hour in the middle of the night laying and thinking about nf.

So our doctors appointment today was "routine." It was with our ent for a post-op check of her tubes in her ears. There wasn't any true reason to be stressed about it!! However I decided since he specializes in throats too I would mention something I noticed on her throat. I had mentioned it to our doctor when I took Abigail in for strep throat. She thought it was a swollen lymph node. I had noticed it about three weeks before that. However after she finished her antibiotic it was still there. So I thought it probably is still just a lymph node but I'll ask.

So holding my daughter sort of upside down through her tears I showed the doctor. He felt it for a few minutes and pondered before he spoke. It could be two things. He explained the first one. Then sort of said what had been in the back of my mind since I noticed it. "It feels like a fibroma. When she has her mri they should be able to tell you for sure what it is."

I held it together as we walked to the car. Not very well, but I held it together. I drove home, although I don't really remember driving home. I feed Abigail a toasted cheese sandwich and peas...because she loves them and I wanted her to have something she loved today. I layed her down for her nap and walked downstairs at which point I lost it.

Jason called at that moment so I told him what Dr. Phillipsen had said. He didn't really say anything else. We just stayed on the phone for a minute and then he said I have to go I'm at my next job.

Now it is still possible that it is not a tumor so I am trying to remember that. None the less I feel similar to what I did the day we found out about the nf. Unsure of how to deal with this, wanting answers NOW and deciding to watch scrubs and drink a beer. This isn't how we deal with everything, it just helps to bring laughter at the end of a hard day. It also is a nice way to space out the discussion of new things.

This post was mostly as an update so I don't have any real wit or encouragement. Please continue to pray for Abigail, us, and the doctors who will be caring for her.

With heavy hearts,

Thursday, August 6, 2009

The lap of my daddy

I have felt it for the last few days. Although I couldn't actually say specifically what was going on I knew I was stressed. My body does funny things even when I think I'm fine. So I wondered what it was and when I would figure it out. I think I knew the whole time, but didn't let myself believe that was the problem.

I have done really well with all of this nf stuff over the last month or so. However handling the idea that your child is anything less than super healthy is often a process. I'm not sure if there are typical steps or not. So in the last couple of weeks I have noticed quite a few new spots and am positive the spots I'm seeing on her bum are the freckling. So I feel like everyday as I change her diaper I have to accept it again; like perhaps something has changed and those spots aren't there anymore. I have tried to say it out loud a few times. I think I am working through accepting it still. She truly has this disorder, and life ahead holds numerous unknowns.

However I woke up at four thirty this morning for no reason. When I finally fell back asleep I had a dream. There were people in it, and it started normal, but the end turned out being this man standing and just reminding me of all the things that could happen to my daughter because of nf. I know. Believe me I know, and I'm not sure what this dream was about. However when I woke up feeling physically nauseous thinking about it I knew this was the source of my stress.

I was awaken by Abigail being ready to get up and eat breakfast. She has gone through her morning routine and is down for her first nap, and I still feel this dream. I sort of want to stuff it back down. I feel silly even thinking about nf sometimes when she is fine right now. I talk to other parents and people who have nf and often feel so grateful for the things we have already bypassed as possibilities. People keep telling me that most people with nf have a "mild" case. What exactly does this mean? Abigail will have spots all over her, maybe some learning disabilities and a few tumors. We will go the doctors two or three times a year for nf. Reading that, to some, may sound mild. I am aware that there are lots worse things. Perhaps I'm not looking at things from the "right perspective." However, my daughter having tumors, even if they are benign, does not feel mild. My child getting made fun of for looking different and learning difficulties is not mild. It is hard and something that I will have to help her through.

Some of you reading this may have been the ones reminding me that it is often mild. Don't take this personally. I need reminded of that as well so that I don't go off the deep end with the "what ifs." It's just that sometimes I forget to let myself be sad or angry at the thought of everything. I tell myself I should be thankful that I even have a child, or that she is alive. These things once again are good to be thankful for. I just get so wrapped up in them that I'm not letting myself work through the process. So today I am going to spend some time grieving. I'm going to tell people that I don't want to hear about their issues, I want to spend some time working through mine. I'm going to crawl up on the lap of The Heavenly Father, put my thumb in my mouth and just snuggle in tight and cry for a spell. When I feel like I am done with that I will let Him wipe the tears away. I will climb down and do my best to care for others; now that I have taken care of myself.