Friday's thoughts

I have a lot on my mind. Things are sort of scattered so you will have to bear with me. First of all Abigail's x-rays came back normal. Which is great. I still don't know what it going on with her leg/hip region though and that is frustrating to me. However we will move forward and see what else the therapist suggest. We are getting ready to start some kinesio taping for her abdominal muscles. I am hoping it helps some.
Second I have been thinking a lot about Haiti. I also have been thinking about a certain public figure for Christianity who says stupid things on television about why bad things happen. He makes me so angry. I think he should be banned from speaking. Honestly at this point it doesn't matter "why" there was an earthquake. It matters only that there was one. There is massive devastation. Survivors need things like clean water, food, and shelter. We as Christians need to be stepping up and loving these people through prayers, donating resources, and going to Haiti. That's what the Bible calls us to do. Love people. It does not call us to stand in a better than you position and point fingers when bad things happen.
Third I am starting to get the "So are you ready for another?" question. Let me clarify. I don't want anyone to ask me this. No one. I hate that when we were dating everyone asked when we would get married. And once we were married we immediately started getting questions about babies. So now that we have one everyone is asking about two. Guess what. We don't always have to be focused on the future. We can enjoy living here with one for the time being. However I will share a little more of where this thought has taken me and why I probably feel so annoyed about it right now.
I am a middle child. I have an older sister and younger sister. My younger sister is 10-1/2 months younger than me. Soooooo.....if you aren't great at math...my mom got pregnant six weeks post my birth. I loved having a sibling that close to me. We were best of friends growing up. I wanted my children to be close in age. I have no control over that really. So when people ask me it just bums me out.
Another part of this train of thought is that I am starting to feel ready to do baby again. However I in no way feel like it is God's timing. So there is this sort of beginning of longing happening that I know needs to wait. And I remember vividly how much waiting for Abigail hurt. So I'm not looking forward to that.
And even more with this train of thought has been how frustrated I am at things people say about pregnancy. Like using the word "surprise" to describe being pregnant. Unexpected maybe. Surprise...well aside from Mary (Jesus' mother) I can think of nobody who can be 100% surprised that they are pregnant. We all know that no birth control is guaranteed. Even people who have surgical procedures are not guaranteed no more pregnancies. So if you have a uterus and you are having sex, there is the possibility of pregnancy.
And then there are people around me who constantly complain about pregnancy. I have talked before about the fact that we have not been devastated about not having biological children. This does not mean that I don't still wonder what it's like to feel a life growing inside of you, or to wholly nourish your child for the first few months of life. There are part of pregnancy that I am sad I don't get to experience. So when I hear people talk about how horrible it is I want to ask them to kindly find someone who has also experienced pregnancy to talk to because the only words I have for them are just be thankful that you get to experience this miracle. Oh and definitely, definitely do not complain about giving up drinking alcohol for nine months. Seriously I can't remotely understand how this is a "hard" thing when it comes to the well being of the miracle growing inside of you.

That was it. My meandering thoughts for the night. Peace.

Whatever may come

I don't dream of having my child be normal. Probably because I have never quite fit into that category. I'm a little socially awkward, and few people get my humor. So this post is not about how much I long for Abigail to be like the other boys and girls her age. It's about far more than that.

This morning Abigail and I were playing with her ball together. We take turns throwing it, and when I try to get it she giggles and squeals. It's a lot of fun. I asked her to kick the ball. She is not quite big enough to understand this concept. So I tell her to get it with her toes. As I watch her try I started to get teary eyed. Oh the determination. She did manage to touch the ball with her foot.

It's just that in watching her go through physical therapy for two weeks, and working on exercises at home I have become painfully aware of things that don't do what they should. As far as everyone else can see Abigail has met all of her milestones. If you go through a checklist of what cognitively and physically a 16 month old should do you could check all of them off.

However as I have said before, her legs don't quite do what they should. Hopefully when we get the x-ray of her spine and pelvis we will be able to determine more of what is going on. But watching her try to do things sometimes breaks my heart. Her happy easy going personality does not get very frustrated. She just tries until she gets it. But I want her body to work like it is supposed to.

None the less my sweet bug reminds me of how to experience joy. Whenever she gets a bubble with her foot, or kicks the ball...she smiles, claps and says yeah! Almost like she is reminding me "See mama, you just need to be proud of me. You just need to tell me good job."

I know that God is sovereign and works in ways that are far beyond anything I could ever understand. I also know that her personality goes perfectly with everything she has been through and will go through in her life. Jason and I will continue to ask God to touch her little body and heal it. Whatever may come though we will cheer her on!

Hair

Abigail's hair with nothing done to it.

There's something about little girls. The little clothes, tights, shoes, and all those hair clips. When we were waiting on a baby I would look at stuff every time I went to the store, or a garage sale. I knew we would have a little girl.

When Abigail's tummy mommy chose us I was so excited to get to do her hair. You can do cute stuff with little girls hair, but there are way more options for little black girls. They have this array of colorful barrettes and beads. You can put hundreds of little things in their hair that click clack together and just look really beautiful.

However I also knew there were differences in hair. So I started on my journey of reading and research. I found which type of hair moisturizer ("grease") and conditioner I was going to use for her. I decided on a shampoo. It was really important to me that I be able to do her hair. I know other adoptive mothers who often have their children's hair done by someone else, and I think that is fine. But I wanted to be able to do Abigail's hair. I wanted the time of bonding with her sitting between my knees while I moisturized and braided. I wanted to be the one doing her hair.

Well...she came out with a full head of curls. They weren't the tight curls that are there now. But we started immediately with the shampoo, conditioner, and moisturizer. It has worked great. She did lose some of her hair, but it has all (but one small spot in the back) came back in very curly. Her hair beautiful. We love it when it's down and just an afro. However because she is little it is hard to keep this nice (free of tangles and globs of yogurt and sweet potatoes). So I have taken to keeping it braided most of the time. I have gotten better...and will continue to as I try out new styles.

I love doing her hair though. I pull out the supplies and surround us with it on the couch. I pick out bead colors and decided what I want to do...braids, cornrows, a mixture...so many choices. So last night I did a new set of beads (they stay in two to three weeks) and thought I would share the progress through pictures. I hope you enjoy them as much as I love sitting on the couch with a toddler snuggled up to me while I part, braid, and bead her hair.

Braiding

Braiding

Beading

rubber band on the end

back view

top view

Abigail saying cheese

Mama and Abigail...braids are all done!

My very favorite things about the braids are that as I'm doing them I will often give Abigail a little mirror....and she will look in it and say aw. She knows she looks beautiful. And my other favorite is that she has learned early how to make them click together to make noise so she will shake her head all sassy like. It's great. I'm so glad that I learned to do her hair.

Dancing Queen

Abigial playing in shaving cream

The past two days were like a small slice of heaven. Abigail was herself for the first time in what seems like months. She was finishing up drops for pink eye and an ear infection. She was happy, silly, and only prone to moments of whiny toddler behavior. She felt good. I could tell. It was a small glimmer of hope in what seemed like a dark era of illness after illness...appointment after appointment.
And this morning she woke up sick again. The little girl can't seem to catch a break. It seems to just be a cold and hopefully it won't warrant a trip to the doctor, but her fever is on the rise and she was pulling at her ear...so a mama can only guess that she may have an ear infection with the cold.
However I don't want this post to be all about how much Abigail is sick, or all of the appointments we have. I know I post about those things often...and it's because that is what my life as a stay at home mom has revolved around for a while.
I would however like to post a video of Abigail being herself. You see despite all of the craziness that has encompassed her life she still acts like a toddler most days...a very easy toddler. She loves music, and dancing. She likes to read books and snuggle. She loves her monkey and lambie. She likes to tickle her papa...and play peek-a-boo.
Her giggle lights up my life every time I hear it...and she giggles often. There is something so beautiful and wonderful about a child's giggle. And there is something great about how much joy they find in life. Abigail laughs when I make a silly face, tell her I'm going to get her, and pretend to eat her toes. I don't laugh that easily anymore, but hearing her giggle reminds me how great it is to just laugh. To enjoy life and all of the good things it brings with it. So enjoy the video of our little bug being herself...and find a reason to laugh today!

Emotional days

Mama and her snugglebug

I don't know how to describe this funky feeling I have today. It's this nagging reminder that although things seem okay, under the surface something unknown could be lurking. I'm annoyed that it crept in today because Abigail has been herself today in a way that I haven't seen for a while. It has been a wonderful day filled with reading stories, giggling, and singing songs together. And this stupid feeling.


When we were told about Abigail's NF it was ALL I thought about for days. I cried, woke up thinking about it, and Jason and I talked about it during most of our free moments. I didn't think a day would go by without me thinking about it. It did eventually grow less though and there were days where the only time I thought about it was when I saw Abigail's cafe au lait spots.


As we approached the past few months with lots of doctors appointments and some scares it was on my mind a lot, but felt different. Less scary maybe because it was no longer the unknown. It's interesting how my brain works though. Even though I know my daughter has this, because she wasn't officially diagnosed I could push it aside. I could almost pretend that we were not dealing with anything.


So then I get paperwork from insurance and to help us get insurance for children with special needs the doctor made the diagnoses official. It doesn't change anything. We will still do exactly what we have been doing all along. I knew that it would become official in the future. However seeing that paper with the diagnoses of "neurofibromatosis, and lack of coordination" still threw me for a loop.


A few weeks ago we got another paper in the mail from Riley. It was a survey about her MRI. I didn't fill it out. I didn't want to fill it out. They sent a second one and politely wrote that I am not required to fill it out, but they would appreciate the feed back. So I filled it out today.


I sat and cried as I thought about my little girl in that big machine. I remembered what it was like to sit in the waiting room and wonder if something would show up on the scan. I felt some of those same feelings that had washed over me that day. And I thought about the future. How many MRI's will she have? Will they always come back fine, or will they one day find something?


It's weird how little things like this can throw me off so much. I think though that because Abigail's NF is not in our face all the time that I can compartmentalize it in my brain. Then on days something comes up, the fact that my daughter has a genetic disorder pushes it's way to the front of my thoughts and nearly overtakes them.


I don't really know what to do with all of it either. I just spend the day thinking and trying to function. I hope that I "sleep it off" tonight and that tomorrow I wake up ready to face a day filled with different sort of thoughts. What else do you do? I have great friends who can listen well, but I don't want to talk to someone who doesn't understand sometimes. And even talking on days like today often ends with me feeling the same as I did before I talked.


So I spend the day in a funk. I remember to enjoy my little girl more because things are so uncertain. I tell God how much I wish that children didn't suffer and die. I cry. And I push forward with life because it won't stop just because I'm having a hard day.

Another little update on life

Abigail in her new monkey jam jams.

Abigail started physical therapy today. I wasn't sure what to expect, and was really nervous for some reason. I think it was probably because someone I didn't know was coming to my home. Would it be clean enough? Would she think I'm a good mom? Just all those little insecurities that come out in me when new people are around.


Well it went better than I could have hoped. She apparently didn't notice the piles of laundry that needed put away, or that my kitchen needs mopped. I guess she wasn't here to inspect my house. Who knew? However she was here to interact with my daughter.


I was nervous about that too. I have noticed for some time that Abigail has a funny walk. I have even mentioned on here before I think. However I don't know how to describe it, and most toddlers have sort of funny walks. So I was a bit nervous she would think I was a silly over reactive mother who's child was fine. I was nervous that I was being a silly over reactive mother who's child was fine.


I wasn't. She immediately saw what Jason and I see. She said the same thing. It's hard to describe or even pin point exactly what it going on there. She definitely has low muscle tone, but then there are just a few other things that are "off."


I want Abigail to have nothing that she has. No more chronic ear infections, no more asthma, and no more nf. That being said it was a huge relief and affirmation that she agreed. I am not a silly over reactive mother. My instinct is right. There is something not quite right about the way she uses her legs.


She was wonderful with Abigail. Abigail loved that she had a bag full of toys. She was still a bit stand offish and frustrated at a few of the things the p.t. had her do. However the therapist was so patient, and when Abigail wanted me she would adapt what she was doing so that Abigail could be with me. It helped ease my mind a lot. Abigail has always been a cautious creature when it comes to other people. Since we will be seeing Miss Carol every week I was thankful that she was fine with Abigail's slow warm up time.


So from here we will have physical therapy every Monday afternoon. We are going to do a little more work to figure out exactly what is going on in there. We are going to have some x-rays done and go from there. We don't have any appointments this week (last week we had pink eye and a ruptured ear drum...so much for the no doctors for a while). So I'm hoping that she will stay well enough that we won't have anything else until next week.


We go to see the e.n.t next week, and I need to take her to have her lead levels tested. I am going to try to get the x-rays and lead test done on the same day...and I'm still holding out hope for a break after next week of doctors for a while. Keep praying this for us please. :)





Hoping for a break soon,

Family Ties

Abigail with mama

There is this scene in the movie step mom. Julia Roberts (the step mom) and Susan Sarandon (the mom) are in a restaurant. Susan has recently found out she is terminally ill. There has been an ensuing battle between the two to have the children like them more. However the words from this scene are what I am trying to describe. It will be a paraphrase. Julia confides that her biggest fear is that on the little girl's wedding day she will be there helping her get ready and the little girl will be sad and want her mother. Then Susan Surandon confides that her biggest fear is that on her wedding day she won't say I wish my mother was here.
This is exactly how I feel. Sort of. Being an adoptive mother has meant this raging battle inside of me. I want Abigail to know about her birth family. I want to teach her how awesome they are and how much they love her. However this other part of me is afraid that one day she will like them more. That I will not be enough for her and she will want her tummy mommy on her wedding day.
I know there is room for her to love us both. There is even room for her to want both of us there when she gets married, but never the less, this is me being honest, and this is my fear. So a week before Christmas we got a phone call that Abigail's birth mom had a Christmas present for her. The loving kind part of me called and said that if she would like to meet us she would be welcome to watch her open it. I was being sincere, but still didn't think she would say yes. She did say yes though.
So on Tuesday a very nervous mama and papa showed up with a little girl that is ours, but we also share. Abigail hasn't seen her birth mom since she was two days old, and I'm certain doesn't actually remember. We do have pictures of her, and we talk about her, so I wasn't sure if she would feel the familiarity or not.
My heart was racing and there were butterflies. I wanted this for my little girl, but also was sort of afraid that she would cling to her birth mom. It was an unfounded fear, but it was there. So when her tummy mommy and birth father arrived we went in a private room. Abigail sat on my lap and opened presents. She flipped through the book she received. Her tummy mommy started to tear up.
I too then started to tear up. I love her birth mom. She was a great friend for the three months before Abigail was born and I miss our laughing together, and enjoying Big Mac's. I too started to tear up. She said she was going to go before she started to cry and thanked us for letting her watch Abigail open her presents. We all hugged and I told her to let us know if she wanted to get together again.
So although my fears were completely proven false, there is still a part of them that is there. I am Abigail's mama, and that day she clung to me like that was true. However there will come a day when she may want more biological connections as well. And although it is hard for me to fully be okay with that, I also really want that for her. I want her to know that she looks just like her birth mom. I want her to know where she got her eye color, hair texture, and height from. I can give her lots of things as her mama. I even have tried to write down every story her tummy mommy told me. There will always be something though that she can only get from those biological connections.
So although I may never fully figure this balance out, I will continue to attempt what I think is best for Abigail. Her birth mom also gave Jason and I a card. It has been the thing that has reminded me that no matter what happens in the future, I need to be as unselfish with our little girl as her tummy mommy was when she asked us to be her parents.



The card says "You're Amazing, and I'm so thankful to have you in my life." One the inside her tummy mommy wrote a message to Jason and I, "You're two of the nicest people I know, I'm truly blessed my little girl have great parents. Love, V."





I hope that as the years go by I can have a heart like hers.