Virginia's Cough (and Happy Birthday to Eliza!)

(I really hope that Eliza and Wills don't feel like a subtitle to Virginia!)

So, to catch you up on our medical issues, Virginia's cough is no better. Actually, I would almost say it is worse. We all  (Findley, me, her doctors) agree that she is aspirating, but we also agree that this doesn't totally explain the cough. It is a horrible, wet, body-shaking cough and it wears her out and makes eating next to impossible. It is the worst in the morning- it takes her about 2 hours to clear the stuff out of her lungs. She hasn't slept well in three nights, and I am so tired I feel like an unfit mother.

As you may remember, Virginia had a bad day in April where she had six seizures in one day. (Her first seizures in six years.) We doubled her seizure medicine from an almost nonexistent dose to a still-relatively-small dose. Then on July 2 she had another one. At that point, we doubled her medicine again. She is still on the low end of what is considered an effective dose, but realize she is taking 200% more topamax than she was in early April.

That being said, when she had the July seizure, the nurse at neurology suggested that her new allergy medicine could be triggering her recent seizures. When I looked back, she had started the allergy med ten days before that awful day in April when she had six seizures. So we took her off of it after the July seizure and she hasn't had another one.

But maybe she hasn't had another one because of her new level of topamax?

Here's why it matters. Her cough started around the time when we went up on her medicine. I am guessing it is somehow to blame- it is thickening her secretions, or making her so tired she's not swallowing as much. I don't know, but it's all I can come up with. The pulmonologist agrees with me, but not the neurologist. We see the neurologist on Wednesday and hopefully we can agree to go back down on the seizure medicine and see if this helps the cough. But obviously we don't want any more seizures either.

We are also going to try steroids this week to see if that helps with the cough. And maybe reflux meds, too. (But you can't try it all at once or you won't know what's helping.)

Virginia seems more frail to me than she ever has. I feel like most of what I do is take care of her. But in some ways, I think it is amazing how much our family does in spite of all the care taking. I know why, too- Virginia loves life. She loves people. She loves to be on the move. But I think we are entering a phase when she is going to need lots of holding. Which is fine by me- will someone just come entertain my other two?

We meet the GI surgeon who is going to put in her feeding tube next Tuesday, September 20th. I feel like he will schedule her surgery within a week or two of that date. Her birthday is October 3, so I think I will try to push for a date after that.

On a happier note, someone else in our family just had a birthday. Eliza turned two last Friday. My dad was in Baltimore for a meeting, so mom came to celebrate. You know the third child doesn't really get a party, but she didn't care. She got a Mickey balloon and a Scooby-Doo stuffed animal.

And just for comparison, here is someone else with his Mickey balloon on his 2nd birthday...

Eliza had a Mickey cake, too

You can tell that once I have a plan that works, I don't tend to change too much

Eliza got a baby and a baby stroller for her birthday. She didn't care a thing about the baby and instead put "Doo" in the stroller. I stuck the baby in a closet for Christmas.

Geegee and Daddo gave Eliza a sand and water table for her birthday. It is a big hit...

They like the table almost as much as the box it came in.

We had a surprise visitor yesterday. My dad was driving through on the way home from Atlanta. He had gone to a meeting of the Civil War Historical Railroad Society. (or something like that). For some reason, my mom doesn't usually go with him on these trips, but hopefully Eliza will be joining him soon.

But this is still Daddo's biggest fan...

I always hesitate before putting pics like these on my blog, but I want people to know it's not all gloom and doom over here. On Friday I hosted a surprise party for my friend Laura. She has wisdom beyond her years and has been there with us every step of the way since Virginia was born. It was so much fun to have her closest friends to dinner and celebrate every one of her 29 years!:) I even think she was genuinely surprised, too!

Thanks for making it to the end of a long post, authored by a sleep deprived woman. Please pray that Virginia's cough subsides and that she gets stronger. I also really want her off most of her seizure med- I think it is taking us in the wrong direction. One thing leads to another and I am trying to put the brakes on a downward spiral!

The Dust Bowl

The quality of air in our house has gone from bad to worse thanks to a combination of paint fumes and dust. I can't find anything we need because it is buried at the bottom of a box and then wrapped in plastic for good measure. When a porto-potty was placed in our front yard this morning, I took that as a sign I better hit the road. (but not before I had them move the potty!) I am at my parents with the kids. Findley is holding down the fort.

I came home yesterday and the painters had put paper down all over the house to protect the floors. For some reason, they then put my little kitchen rug back on top of the paper. I don't know why, but I can't stop laughing about it....

IMG_7701

I wasn't the only one desperate to escape...

IMG_7687

IMG_7678

IMG_7689

A Mother's Guilt

IMG_7387 For the past few months, I have been in a funk in the afternoons. Really ever since Virginia and Wills started back to school. It has taken a little while to put my finger on what's going on, but I think I finally have.

I am overwhelmed by my inability to take care of my children on my own.

Let me clarify. There are plenty of times when I am alone with my kids and we do fine. Their basic needs are met and sometimes we even have a little fun, too. The problem is that I can't hold Virginia and Eliza simultaneously. If I get Sissy out of her chair, immediately Eliza starts crawling up the stairs or trying to swallow a penny. Virginia needs a certain level of quiet so she can concentrate to eat or do school work. She doesn't get that if I am chasing Eliza at the same time.

Wills deserves my full attention sometimes, too. He needs to be able to rough house without being told, "Be careful. I'm holding Virginia," one hundred times. He needs me to help him learn how to ride his bike and throw a football. Occasionally, he needs to be free to be four.

Leaving the house with all three also poses a serious challenge. I can't push a wheelchair and a stroller, so if I have all three, I have to carry Eliza and push Virginia. It is not so simple to push a heavy wheelchair and hold a very heavy fourteen-month-old. Now try carrying a bag of groceries or retrieving your credit card from your back pocket while holding Eliza and keeping one hand on Sissy. Not simple at all.

Ever since Wills was twelve weeks old, I have had help with my kids. Right now, that help looks like 12:15 to 6:15, Monday- Friday and a date night once a week. I love Amy, Virginia's current helper, very much. I am very aware that my life, all of our lives, depend on her service to our family. And yet having her here causes me to face the reality that I can't do it on my own.

At twelve-thirty, Eliza and I walk to school to pick up Virginia and Wills. When we get back, Amy has Virginia's lunch ready and she sits down to feed her. Two days a week, Virginia has some type of therapy. On the other three days, Amy (a veteran teacher) works with Virginia on her homework, academic goals, speech device usage, and wheelchair driving. After that, we have a snack and all of us find something to do together- we go to the zoo, jump on the trampoline, or read books on the gymnastics mat.

Sounds simple, right? It should be, but of course for me, it's not. The problem is I want to be in two places at the same time. If Wills and I are drawing with chalk on the patio as Virginia and Amy leave for therapy, I have a pit in my stomach. I should be going with her, I think. She just got home from school and she's already leaving. The reverse is true as well. On days when I take Sissy to therapy, I feel sad about leaving Eliza, my baby, with someone else to be put down for her nap or about not being the one to make turkey pinecones with Wills.

I used to try to make myself feel better by comparing our situation to other families with three children about the same ages as mine. How much one on one time does Laura actually get with Miller, I wondered? For a typical mother of a first grader, probably not much. Virginia's first grade friends are at school until 3, and then most days they have ballet, tap, tennis, piano, art... and we don't have any of those things.

I am sure that Laura has a certain level of sadness about the fact that Miller isn't a baby anymore and that they don't spend as much time together reading books or taking walks. There is a real sadness in watching children grow up, even healthy ones. But Miller has moved on to be able to make friends and entertain herself. To read a book on her own or play a game with her brother. Virginia still needs me just as much as she ever did.

Several months ago, friends and family started encouraging me to let my helper actually help. Let Amy do most of the feeding while she is there, I heard from more than a few wise friends. (who were probably just tired of hearing how overwhelmed I feel). You have to give up control a little, Abby. Let go of the reins.

So for a while, I let Amy do most of the feedings that occurred while she was here. Feeding Virginia isn't my favorite thing anyway- it is slow, tedious, and frustrating. It is certainly not the most fun time with her, and so I decided it was ok to save my energy for more special moments and let Amy feed her.

But then this previously mentioned sadness began to creep into my soul in the afternoons and I have been struggling to identify its point of origin.

In the last few weeks I have had an epiphany of sorts. I think a lot of my sadness is due to the fact that I miss Virginia.

I have realized that physically taking care of Virginia is one of the biggest ways I show her my love and one of the biggest ways we communicate. Wills and I communicate even when we are working on different tasks because he can talk. He tells me about his day, and I listen and respond. It is different with Virginia. Opening her hand to keep her thumb from digging into her other fingers, brushing her hair out of her face, feeding her dinner, holding her, and even getting up to reposition her ten times every night are all ways that we connect. As hard as some of these tasks are, giving them up robs me of great joy. I am her mother. I want to be the one who takes care of her. I miss her when I'm not.

The natural order of life has been gravely impacted by Virginia's injury. My seven-year-old needs me more than my one-year-old, and that hurts. It creates an unnatural, extremely difficult situation that I am blindly struggling through. I feel pulled in many different directions. I know that I am not the only mother who struggles with balance, but as with almost everything else, Virginia's suffering raises the issue to new levels.

And so here I am. Wishing Virginia could help entertain Eliza. Wishing I could watch my oldest two run around the park while pushing my baby in the swing. But accepting that I can't change what happened and seeking to find some level of balance.

Learning selflessness is one of the best parts of being a family and I don't mind that my kids have to suffer on account of each other. I just have to make sure that no one suffers too much or gets lost in the shuffle. Even me.

(I realize that this post is way too long. I am too tired to edit and sometimes work through things as I write about them. Also, I thought some of the detail might be helpful to my special-needs mom readers.)

Make Your Moments

IMG_6515 Eliza turned one on Thursday and it is hard for me to believe that she has been a part of our family for a year. The jump from two kids to three has been tougher than I envisioned and it has made me take a hard look at some of the ways I operate.

I am a last minute girl. In college I never started a paper (at least not a good one, anyway) more than twelve hours before it was due. I start thinking about what's for dinner at five o'clock every afternoon, and I begin addressing my Christmas cards on December 23. There is a certain aspect of my laid back attitude that is beneficial around our house. However, having three kids requires me to be more purposeful in my planning and it has been a hard adjustment.

In addition to being more intentional in daily matters,  I am also going to have to do a better job of grabbing little moments with my children when they occur. Gone are the days of endless one on one time with Virginia. Gone are the daily trips to the Western with Virginia and Wills in the double stroller. We no longer go to the playground twice a day or the zoo on a weekly basis. I miss those huge chunks of time, but am learning to embrace special moments when they come along.

I hate to confess this, but I took a nap with Eliza almost every morning last fall that Virginia and Wills were both in school. I quit going to Bible Study and my other scheduled morning activities because I preferred cuddling up with my sleeping baby and I knew that opportunity would be short-lived. And last week when Wills was sick, he and I spent five straight mornings on the couch reading all of Stuart Little and Mrs. Piggle-Wiggle's Farm. I ignored my to-do list (which is pretty overwhelming because I also ignored it all summer) and embraced an unexpected windfall of time because one day he won't want me to read to him anymore.

As I have said before, finding a balance is a tall order for me. It is hard for me to know when to do the dishes and when to play hide-n-seek. Is it time to sweep when I can't see through all the dog hair swirling around the den? Is thirty-six hours the point at which food left on dishes in the sink permanently solidifies? My inclination is usually to tackle the household tasks so I can check them off my list. But, unfortunately, that list never ends. If I am waiting for everything else to disappear before I fully engage with my kids, I will be waiting forever.

Yes, more children equals less time. And the time I do have with Virginia and Wills looks different than it used to and that makes me sad. They are growing up. But with each passing day comes greater appreciation for the depth and possibility of each moment that does present itself. In both the extraordinary and the mundane, I long to make the most of every second we have together.

Favorite gift- Findley's old dog, formerly known as 'Brownie.' Now called 'Daw-gee.'

Balloons were the biggest hit.

IMG_6501

IMG_6533

Stay away from my cupcake!

Somewhere in the Middle

(All the pics in this post are completely unrelated to the topic. But they are recent, cute and I wanted to share!)

IMG_3877

Finding the middle ground has always been a hard thing for me. If I let myself eat two oreos, I am likely to finish the whole sleeve in short order. If I start cleaning out dresser drawers, the entire house will be spic-n-span in a matter of hours. I tend to be either overcome with gratitude for the love in our family or absolutely grief-stricken at what Virginia endures. (I guess if you've been reading my blog for a while this isn't news to you.) Slowly I am beginning to live in the tension between these two extreme emotions.

Last night is a perfect example. Our downstairs air conditioner was broken, so we were all going to sleep upstairs. Wills was thrilled that Virginia was going to sleep in his room. I had taken the mattress off his spare twin bed and put it on the floor for Virginia so that if she fell off, she wouldn't have far to go. Wills was having fun jumping from his bed to the mattress on the floor, over and over again. Eliza was sitting on the mattress and she could not stop squealing at his antics.

In the meantime, Virginia was having a total come apart. It had started with whining and by bedtime, she was all out screaming. Findley was home from work, but try as we might, neither one of us could comfort her. She was tired; she had been up since 3 a.m., but I never really know why she screams. The last few times she has gotten this upset, she has thrown up, so we took her in the bathroom in the hope that another rug wouldn't be ruined.

So, there you have the two parallel universes of the Frazer house. Findley was sitting on the edge of the bathtub holding Virginia, gently rocking her, desperate for her to quit screaming. I sat on the floor holding her jaw so that it wouldn't get stuck as she screamed. Every now and then, I would peer around the corner to check on the little two and I just had to smile. Wills was having a great time jumping from the bed to the mattress and Eliza couldn't have been happier watching him.

I am called to find joy in the midst of suffering and to create a balance between the two. Somehow I have to share in Wills' and Eliza's joy as they play even though a part of me is weeping because I want Virginia to be included. I want her to be excited about a slumber party when instead she is struggling to live.

These situations present themselves all the time. Virginia lasts about twenty minutes on the beach because it is just too hard on her body. She ends up in the house watching a movie while Wills builds castles and looks for shells. It's not fair, but there is no way around it. Wills and Eliza shouldn't have to miss out because of Virginia, but it hurts when our family isn't whole.

My all or nothing personality makes it very difficult to strike an emotional balance, but I must do it because the health of my marriage and the happiness of my children depend on it. The middle ground is the honest place to be because there I am dealing with both the sorrow of the fall and the joy of the redemption. To leave out either one would be to miss an essential variable in the equation.

When Virginia is screaming, I want to bury my head in the sand and pretend I don't hear it, but that's not a choice. It would not be tenderhearted toward Virginia or respectful of my own broken heart to stick in earplugs and skip down the hall and ask Findley what he wants for dinner. Nor can I get in bed and start crying and never get up again. That's not a choice either.

So there I find myself, struggling to live life in the middle. At times experiencing pure joy, yet at other times allowing the sorrow to find a place to stay for a while. I used to think that eventually the pain of what happened to Virginia would go away. That if I prayed enough and sought enough wise counsel on how to best handle things, one day my heart wouldn't break with the crying. But sometimes it still does and I have realized that is ok.

To be fully engaged in this world means that we all experience both deep hurt and incredible joy every day. We must strive to live in the tension between the two instead of barricade ourselves in one direction or the other.

A very wise friend introduced me to this verse yesterday and I love it:

"I am sorrowful, yet always rejoicing."  2 Corinthians 6:10 (NIV)

and I also really like the New Living Translation:

"Our hearts ache, but we always have joy."  2 Corinithians 6:10

IMG_4784

IMG_4712

Celebrate Today

IMG_4838

When we were in Memphis last week, I voiced some frustration to my dad over how hard daily living activities are for Virginia. When I watch her suffer through so many simple things, I wonder how we are going to keep her spirit from breaking under the weight of what she endures every day. I was also complaining about how much time and energy it takes just to maintain the status quo.

"Dad, how am I ever going to get anything accomplished?" I wondered out loud. "When is the pace of caring for her going to slow down? When I am going to have time to write my book?"

Dad has a gift of being able to zero in on the truth instantaneously.

"You might not ever write that book, Ab. For all of us on this earth, but particularly you and Findley, it's not about what we've accomplished at the end of our life. It's about how we live every day and celebrate every moment. It doesn't matter where we end up in terms of graduate degrees or number of books published. What matters is how we embrace life along the way. It's the journey that counts, not the destination."

(I want to clarify that Dad meant that our earthly destination doesn't matter, not our heavenly one. Clearly we know our ultimate destination- heaven. And knowing that final destination gives supernatural meaning to what we go through on our earthly journey and should help give us the right perspective on suffering. Knowing what awaits us at the end of our lives should free us from worrying about 'the small stuff,' even when 'the small stuff' is as big as what happened to Virginia. But, unfortunately, my heart and mind don't always work that way.)

Dad eloquently spoke one of the most important lessons Virginia has taught me. To celebrate every moment. I used to be a planner, someone who always waited for the perfect moment to let loose. When Virginia was little, I was so crushed it was hard to smile. I wanted to wait until things got better, until I knew she was going to be okay.

But I have learned that it is my job to seek out every moment of joy Virginia can have. Right now is Virginia's moment and I need to string together as many memorable ones as I can. Today is my best opportunity to make her smile and to seek out her infectious laugh.

My best friend invited us to her family's beach house for a few days last week and I almost said no. We were tired from visiting my parents and the beach is not simple for Virginia. Just getting her down to the ocean is a challenge. But no one loves playing in the waves more than she does. Look at my pictures- Wills is happy, but Virginia is elated. She would play in the waves all day if we were strong enough to hold her for that long.

We eat a lot of ice cream at our house and we have a lot of dance parties. We never pass up a trip to the beach and I am pretty sure that Findley, Virginia and I will retire to Disney World one day. We do all those things because they are things Virginia loves, things she can enjoy. But the truth is that we are all called to live that way. Each day is a gift- make the most of it.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

IMG_4521

She had been up since 11 pm, but was ready for an adventure. (W and E are asleep in the back.)

IMG_4719

IMG_4714

IMG_4853

IMG_4829

IMG_4897

IMG_4863

IMG_4970

IMG_4765

Uh-Oh

Look who can sit up in her bed. I found her like this after her nap. Definitely time to transition to the crib.... (one bassinet coming your way, Kitty)

I have lots on my 'to do' list, but am trying to ignore it this week so I can prepare my heart for Good Friday and Easter. We have been talking a lot about Holy Week, so when Wills told me he and Eliza were playing the 'holy' game, I couldn't wait to hear. Maybe more is sinking in than I realize? "What's the holy game, buddy?" I asked. "It's where I stick my arm or head through all the holes in your sheets and surprise Eliza." Oh- so he meant the 'holey' game. Do you think the Easter bunny ever brings new sheets?

Virginia hated tummy time for years. I hated it, too. When I finally realized after years that it wasn't helping, I quit making her do it. But she has no sympathy whatsoever for Eliza-

Hope you are all having a wonderful week!

Nothing of Note

I'll be back with a more substantial post later, but here are a few pictures from our week. Happy Friday!
Miss Eliza has found her feet and can't get enough of them. She even sucks on her toes- cracks me up because there is obviously no doubt that she's getting enough to eat.
By the time I got back from our weekly Target run, Eliza was ready to get out of the car. Thankfully, Wills was more than happy to entertain her while I unloaded the groceries (but only in exchange for a new box of sidewalk chalk).
Not quite ready for me to take a picture of his drawing....
Sometimes when I feel like there is too much chaos in our house, I think of the one thing I could get rid of to simplify my life... actually, two things.

Clearly, we had Sawyer and Huck before Virginia was born and it was just too hard to give them away. Huck has cost us in the five digits because of all his ailments. Three surgeries for eating things he wasn't supposed to (including a baby blanket and his bed), three weeks of hospitalization and iv antibiotics for a brown recluse bite, a hole in his femur that the vet said was caused by a thorn that imploded (I'm not kidding) and last, but certainly not least, the time he grew a second tail. (Again, I am serious- it was pre-digital camera, but I will try to scan in a picture.) We continue to take very good care of old Huck because we have too much money invested in him to let him die. But the main reason we could never give them away is that Virginia loves them. Nothing makes her laugh as hard as her crazy dogs. Besides, even Huck is cheaper than a horse! We spent the afternoon today riding him around the yard.

Nana's Black Bottom Pie

My grandmother is a great cook. Everything she makes is delicious, but the two things that our family gatherings wouldn't be complete without are her iced tea and black bottom pie. Nana has four boys (one of whom is my father) and they all still live within close proximity to her. Add to that a large handful of grandchildren, and Nana makes 2 gallons of iced tea EVERY day and has for the last 50 years. She usually brings about four gallons to family gatherings and we drink every drop.

On several occasions, my mother has offered to bring tea so that Nana doesn't have to make so much. At the risk of being accused of heresy by my cousins, I will add that sometimes mom's tea is better than Nana's But no one will drink it- not even a glass is poured because it is not Nana's tea. Her offspring is nothing if not incredibly loyal. Mom finally took the hint and doesn't offer to take tea to family gatherings any more.
Nana's other signature dish is black bottom pie. It is so famous that she has to spend a whole day baking at Thanksgiving and Christmas to fill all the orders. A few years ago, my cousin's wife (who we love) made a black bottom pie and brought it to Christmas dinner. I am sure Nana had given her the recipe, but Nicole hadn't learned the Taylor mantra- if Nana didn't make it, the boys won't eat it. Nicole is a fabulous cook, but out of fear of being branded a traitor, no one even tasted her pie.
You can understand my hesitation about attempting to make my own black bottom pie. First of all, it is a hard recipe. Nana has written it down for me 3 times, and each recipe is just a little bit different. Second, I know that none of my extended family will eat it. But since we live over 200 miles away from the rest of the clan, I realized if I wanted to enjoy it, I would have to take matters into my own hands.
I think one of the most isolating aspects of Virginia's cerebral palsy is the difficulty she has eating. It keeps her (and us) from participating in lots of events because I don't think it is right for us to sit around and eat in front of her if she can't partake. The guilt I feel at enjoying something she can't is tremendous, so I am always on the lookout for recipes that all five of us can enjoy.
One of Virginia's favorite things is Nana's black bottom pie. My dad (without my permission, I might add) gave Sissy her first bite at Thanksgiving when she was only 7 weeks old. Honestly, we were all still in shock from the events of her birth and trying to keep the sorrow at bay. Dad was just trying at add a little levity to the situation, but she was hooked. So after much internal debate about loyalty to Nana, I finally attempted my first pie last weekend. It was delicious (if I do say so myself), although I am sure none of the Taylor clan would have eaten it!
My father (with his partner in crime, my father-in-law) sneaking Virginia her first bite, Thanksgiving of 2003
My niece, Eleanor, was a big help with my first pie. She is much more diligent at watching the double boiler than I am!
Even Wills got in on the action.
Wills, Virginia and Eleanor are about to enjoy their finished product.
Cutest cousins!
Okay, this is the funniest part to me. Eliza will not take a bottle. She refuses to eat even a bite of rice cereal or any other baby food. When she sees the spoon coming, she throws her hands in front of her face and arches backwards in protest. However, she is following in the family tradition of loving Nana's pie. I know, now she'll never eat rice cereal. But that's ok. I have laughed so hard thinking about her devouring the pie that it was worth it! (By the way, I am open to any suggestions to get this baby girl to take a bottle. We have tried everything!)
She is intently watching every bite, hoping for more.
Is there any left, Daddy?