August 27, 2011

Thoughts on The Question

"So what do you do all day?"

This is a funny question I've been asked a few times now that I'm a stay-at-home-mama. Well-meaning, but it always catches me off guard. I pause. I think. A bunch of thoughts run through my head. Well, let's see, I wake up at 6 to feed Anna, then I take her for a walk. I change her, put her down for naps, feed her every 3 hours, read to her, sing her songs (scary thought I know), try to think of things to keep her entertained and stimulated. I budget our money. I balance our banking accounts. I pay our bills. I plan, shop for, and cook all of our meals for the week. I keep track of our calendar, all of Anna's doctors appointments and treatment, and our car upkeep.  I run a ton of errands. I do all the laundry. I attempt to clean the apartment [attempt being the key word]. I read up on whatever baby needs are coming next so I'm not clueless (currently it's starting solids). I buy Ben's books and supplies for school. I try to find the best price for things we need. I pray for our family. I get gifts for birthdays, showers, Christmas. I plan all the ins and outs of any travelling we have to do, etc. Ok, you get the idea. I do a ton of stuff every day. In fact, I feel like I don't have time to do it all most of the time! But whenever I try to answer that one question, "So what do you do all day?" I feel like the answers that come out of my mouth always sound silly.

It's a new experience for me, being a stay at home mom. I enjoy it. I think it suits me- I've always been one to enjoy organizing, managing multiple things, and keeping things on track. But I think it's been hard transitioning to how I think I am perceived as a stay at home mom. I guess I think that because I'm not working outside the home, it's assumed that I can't. That I'm not that intelligent because I choose to change diapers all day. That others think it's an inferior position. Or something like that. Crazy, I know. I doubt people actually feel this way. I'm sure it's mostly in my head.

Ok, let's take this example. I meet someone for the first time. Said someone is married but does not have kids. Said someone is "successful". Said someone says innocently, "So what do you do?" I respond, "I stay at home with Anna". Then I swallow my PRIDE. Because my impulse is to say, "I stay at home with Anna, BUT I graduated third in my class and was voted "Most Likely to be Successful", I got into UGA's honor program and graduated in 4 years with two degrees and a 4.0, got a great GRE score, graduated from a top ten counseling program and learned how to do psychological reports in 3 months at my job". Um, HELLO PRIDE? It's like I want to say "Look at me! I AM smart!" Why do I secretly feel the need to prove this?

I've always wanted to at some point stay at home with my children. I think it's one of the highest callings I could have. I never thought that women who stayed at home were "less than." Quite the contrary! So why do I think others think that of me? Ugh. Sometimes I want to take a big ol' hammer to my pride.

So all that said, I've decided that I have lived up to my old high school superlative of "Most Likely to be Successful". I am successful- I have an amazing husband and a beautiful baby girl, and God has directed us to where we are now, which is the ultimate indication of "success"- to be obedient. Life is about pleasing God, not man. I can't wait to have more kids and raise them all! :)

Can anyone else relate to this? Or am I just crazy?

(I found this pic searching for "stay at home mom" and it cracked me up)

August 19, 2011

Day by Day

It's one of those nights where I can't sleep. When all the heavy thoughts come crashing down and won't leave my side. Dealing with things lately has been day by day. This type of situation is new in a way, because for the first three months we had so much on our plate that there wasn't time or energy to think much about Anna's leg. There was her eating, sleeping, food allergies. There was recovering from surgery. There was trying to figure out what would comfort her when she was upset, what her cues were, how to help her learn to fall asleep. There was Ben's finals. There was major sleep deprivation. Now that she is so easy to take care of, there is a whole lot of time. Time to think. Time to wonder. Time to worry.

Sometimes it just hits me- this wave of sadness that I don't see coming, can't explain. It just washes over me. The Sadness. Grief. I'm not even quite sure what it is over- grief over the "loss" of Anna's leg? Loss of normalcy? Fear of what's to come? Of her suffering? A combination of these things? All I know is The Sadness... the heaviness. It hits me like a ton of bricks. The reality of it all. It just sinks in sometimes.

Like times when I see my friend's new baby who is so perfect and healthy. Times when I see another pregnant woman who is so excited about her new bundle of joy. Times when I see a perfect little family with three or four kids- all healthy and happy. Or a beautiful little girl, perfect in every way. Nothing wrong. Nothing missing. All fingers, all toes. All arms, all....legs. Everything's there. Just as it should be. They don't even notice because well, that's the way it's supposed to be.

Sometimes I WANT so much to just be happy for a friend, or even a stranger, and I AM happy.... but I can't keep the Sadness from washing over me. I hate it because it robs my joy for that person, for that moment. That unexplainable Sadness pushes its way in and won't budge. Won't let me enjoy. The realization that our "normal" has been stolen away. That "normal" will never be us. The naivety that I once had- where everything was as it should be is just... gone. And I can't seem to get it back. Does that sound bad? Gosh I don't even know how else to describe it.

It feels like losing something over and over again. Something you can't replace. Like you are looking for something and you don't even know what it is. You just know it's missing. And you don't know how to find it. And everywhere you go, you are reminded that that something is missing... it's gone. That something that you don't even know what it is. You just know how important it was. And how much you miss it.

My sweet Anna, words cannot describe how much I love you. My heart aches for you when I think about all you have gone through already and what you have to go through still. I wish I could hold you forever and make everything okay. I would give you my leg if I could. I would go through surgery for you if I could. I wish more than anything you did not have to be away from your Daddy and me during that time. Even though it's not anytime soon, I still think about how I can't stand for you to be afraid. How I don't want to give you over to be taken away where you won't see us when you go to sleep or when you wake up. I don't want you to be scared, to feel abandoned because you don't understand what's happening. I already feel so helpless and it hasn't even happened. God, please protect our baby if that time comes. Please comfort her - wrap your arms around her when she is alone and sing over her. I pray that you would whisper your love to her over and over and she would rest peacefully in the shelter of your wings. That nothing would be able to harm her. Thank you for never leaving her. Thank you for never leaving me.

Five Months

I know I'm a week early- but Anna is practically five months old! While many nicknames come and go, "Pumpkin" seems to be the one that has stuck :) What strikes me the most about Anna this month is how HAPPY she is. All the time! I still can't believe it! It's like this magic switch turned on at 4 months and she does nothing but smile and coo. I knew it would happen at some point, but I didn't expect it to be this early or this drastic. I can actually go into stores and do things and she just sits quietly and looks all around. Everywhere we go people comment on how happy she is! Even the worker in the church nursery said she has never seen a baby smile at her when getting her diaper changed the way Anna did :) This makes my heart happy because it certainly was a rough first 3 months. Maybe this was due to her traumatic birth, the separation, or her GI pain for all those months. Maybe it was a combination of things. Either way, I'm so glad she is finally joyful and at peace!

Some pics from this month:

Anna did great during her first beach trip and meeting 20+ family members. She let everyone hold her, slept well in a new place, and wasn't bothered by all the daytime noise. My mom suggested getting her used to change before 6 months, and I'm glad we had the opportunity. Now she seems to be able to adapt to new sleeping situations fairly quickly, with a few requirements- it has to be dark and there can't be too much outside noise creeping in. She loved meeting all her siblings and cousins. She did have a bad bout with eczema at the beach house. Not sure if it was the sunscreen (we used physical sunscreen but it might have still bothered her) or the regular changing from cold air conditioning to hot beach weather. We managed to get it under control using some Aveeno Baby Eczema Therapy lotion. She loves being in the pool!

Anna has been laughing since last month and loves to laugh. She giggles when people are expressive and laughing themselves- including the pediatrician, who called in his wife to witness her cackling :) On a side note, we love our doc- he had a sponsoring Shriner show up at our well-visit to meet us and get an appointment for her at Shriners Children's Hospital in Greenville. Child orthodontic conditions are their specialty and they have a complete prosthetics department on site. They don't even bring up the issue of money as everything is paid for by their sponsorship program all the way until the child is 18- what a blessing (shout out to Justin Timberlake who is the number one donor to Shriners Hospitals). We have an appointment for Sept 26.

She LOVES to roll over- put her on her back and in 2 seconds she will have switched to her tummy. She prefers hanging out on her tummy with her head and chest pushed off the ground so she can see what's up. She loves to be held and can bear most of her weight on just her one little leg- what a trooper! She regularly talks to herself and makes these vowel-consant sounds (ah-goo). So cute.

She still goes to sleep at 6:30 and now sleeps for 9 to 10 hours or so before waking up to eat, then goes back down for another 2 hours or so. I was so happy when she dropped her other night feeding at the beach! She's not really on a strict schedule, mainly because she wakes up at different times in the morning. Sometimes she wakes up as early as 6, other times as late as 7:30. But overall, she eats every 3 hours and is sleepy and ready for a nap after about one-and-a-half hours of being awake.

Anna, we love you more and more as time goes by. You have proven yourself to be such a fighter from the very beginning. You are so filled with joy and I know you will bring joy to everyone around you. I can't help but think that God blessed you in this way knowing the challenges you were up against. I try to soak in every moment spent holding and cuddling you- every laugh and giggle and contented coo. I'm so thankful that you love to be held, cuddled, and kissed because that is my favorite thing to do! I pray God will help me to show His unfailing love for you, how "altogether beautiful you are; there is no flaw in you" [SoS], and that everything in this world is a loss compared to knowing the greatness of your Lord and Savior Jesus Christ. May he shine powerfully in your life. I love you sweetheart.

August 16, 2011

DIY Bench

We've been staying at my parents for a few days, and I've always really liked this bench in their guest room. My mom randomly happened to say "Oh, yeah I made that" to which I replied "What? You MADE that?" She proceeded to tell me how she easily turned an old TV stand into a sweet little sitting bench. I was thoroughly impressed. I knew my mom was quite the decorator but little did I know she also has such DIY skills. Here's a picture. It doesn't quite do it justice, because it looks so cute in the room.

She spray painted the bench first. Then she got some thick foam at a Lowes and covered it with coordinating fabric (you would need to know how to use a sewing machine). Voila! Simple as that. We're currently using it as Anna's changing table.

I've really enjoyed hanging out at my parents. It's so peaceful. I especially love their new garden and have been impressed with their gardening skills. I love being able to see so much greenery from the house.

My mother's style is much more contemporary than mine (go figure) but I still love her simple, clean lines. And all the lovely plants. She taught me that combining a bunch of different types of furniture that go well together is more appealing than getting complete matchy matchy sets from furniture stores.

(Notice all our baby stuff?)

Anna likes it too. Nice change in scenery.

August 13, 2011


"Pride is woven into the fabric of our fallen nature from conception. We naturally think of ourselves as fairly good people, and if we try harder to do better, then surely we will deserve more blessing from God. We know not how blind we are to our own sinfulness and unworthiness. Only the Holy Spirit, who leads into all truth, can open our inner eyes to see ourselves in God’s light for what we really are. When God’s searchlight shines into the deep recesses of our souls we see the shocking truth about our true condition and discover that indeed there is not one thread of worthiness in the fabric of our souls."

August 8, 2011

What I'm Doing Right Now

2 Parents
7 Children
6 Spouses
6 Grandchildren

From 6 states

1 Beach House, 21 people, 10 bedrooms.

Yes, my family is ginormous. I love it!

August 3, 2011

Then There Were Two

I thought I would write a post about the medical options for treatment for Anna's condition. The main reason I thought to write this post was based upon people's common reactions. When they see or look at Anna and ask about the treatment for her condition, I think they shudder inside when we tell them that typically amputation is the best treatment option. They are probably thinking, "Amputation is a treatment option?" Well, actually it is a treatment option. Common responses are "Well surely they can do something these days, with all the medical advances out there" or "Surely they can do something so you don't have to amputate her leg", or "I'm sure they will be able to fix everything with all the medical technology out there"... you get the idea.

These comments can become tiresome. The reality is that we know the options. It's our daughter. What parent would take the decision to amputate lightly? So comments like "surely they can do something" are frustrating. I think perhaps people respond this way to comfort themselves rather than the person addressed. They are taken aback and want to say something reassuring. I can understand this and so I don't blame them. Since their comments aren't exactly reassuring to us, I hope they are at least reassuring to them! All that said, I'm sure I would have reacted the same way four months ago.

I would like to provide a quick run-down on treatment to hopefully dispell any myths. I should start by saying that this is worded through our opinions, research, and discussions with others. I think our research has been thorough and unbiased but some may disagree, and that's ok. Neither treatment option is ideal; we will explain where we are in the decision-making process at the end.

Updated 9/15: A letter from a reader with FH about her parents' decision and how it has affected her.  

Choice #1- Amputation of the affected leg.

Child has the surgery done when they are 12 months old, before they are walking and before they will have a memory of the surgery. They have a prosthesis fitted two months after they are healed. Most children start walking immediately.

  • Complete mobility and function of the leg comparable to that of a normal leg.
  • Ability to walk, run, swim, skate, etc.
  • Only one surgery and the child can go about his or her normal life (a minority of children with complicated cases may need more surgery down the road).
  • Minimal complications and risks.
  • Child looks 'normal' when wearing pants and you often can't even tell he has a prosthesis.
  • Children are resilient and can adjust easily with early intervention. The child grows up with a prosthesis and knows nothing else. He does not feel sorry for himself.

  • Child does not have two real legs and may feel self-conscious.
  • Child has to switch legs for swimming, heavy running, etc.
  • Having to deal with stares, questions, etc. that accompany being different.
  • Having to adjust to a new prosthesis each year.
  • The fittings and costs associated with prostheses.
Checkout this video of a boy with F.H. getting his first leg and walking for the first time. (I couldn't embed this video.)

And this second video below is of a little boy on his special "blades" that he has for around the house when he's tired of his walking legs.

Choice #2- Limb Lengthening and foot reconstruction surgeries.

Child is put through a series of intense surgeries over the course of ~15 years to lengthen the leg bone and muscle and reconstruct the ankle and foot. This type of treatment for FH cases like Anna's (mild to severe) is somewhat controversial in the medical field; some doctors will perform it and others will not recommend it.

  • Leg may be salvaged. 
  • Child could end up with normal function of the leg once they are an adult.
  • Parents don't have to make the difficult decision for their own child to amputate before the child is old enough to participate in the decision-making process.
  • A child like Anna is put through a minimum of 3-4 lengthening surgical procedures. Most children need more surgeries to address later complications (8 surgeries is the average according to the current medical research).
  • Each surgery requires living with a device called an external fixator (though there have been some new developments regarding the fixator being internal vs. external) that is attached to the bone in the leg for approximately 8 months. Screws are turned that stretch the bone and muscle every night to lengthen the leg (painful). Child is x-rayed bi-weekly (travelling to West Palm Beach or Baltimore if you want to go to one of the few doctors in the country with significant, skilled experience) to see how the bone is growing. Child undergoes up to 2 hours a day of intense physical therapy during this long rehabilitation process. This happens multiple times throughout the child's life. Mobility is impaired through these periods due to the surgeries, fixators, and rehabilitation. Many children are confined to a wheelchair and/or use a walker during these periods.

  • The child can have her first surgery and external fixation process as early as 18 months - a very young age to go through such stress and pain over the course of months.

  • High rate of complications. Infections, fractures, nerve damange, and other unexpected complications. Sometimes lengthenings have to be stopped to avoid permanent damage. Long term side effects are concerning to us and are not reversible.

  • Results are not guaranteed since there isn't a way to predict how the bone will respond to the lengthening. The shape of the resulting leg does not match the other leg (because of the stretching) and ends up having what some would call 'disfiguring' scars.

  • Because results are not guaranteed and most patients given the latest procedures have not been followed for more than 25 years (since it's a newer treatment), chronic pain down the road is a big question mark. This chronic neuropathic pain is not alleviated well by medication. There have been cases of people reporting so much pain in their 30s that they ended up amputating their leg anyway. There have been teens who have decided to amputate instead of continue with treatment. I know of several cases personally. Adjustment to amputation as a teen or adult is more difficult than as a child.
  • The life of the family in many ways centers on the child and their treatment. Other siblings may not receive as much attention from mom, who is assisting her affected child throughout the rehabilitation process. Parents may be split up for long periods of time during surgeries and rehabilitation. Some people choose to relocate their families closer to the hospital/clinic when undergoing treatment

  • It is not uncommon for children to be taken out of school for months due to the reality of their care.
  • The child has to wear special braces or shoes with lifts in between surgeries as they grow to make up for the increasing leg difference. This makes it obvious to others that the child has a medical condition.

  • Financial cost is significant to say the least. If you can't afford to have the surgeries done by the few skilled, EXPERIENCED surgeons out there, your child is more likely to experience the above negatives.

  • This recent study shows just a few of the after effects following successful lengthening- including a remaining leg length disrepancy, a majority of patients with limps, valgus ankle deformity, calph atrophy, and residual bowing of the tibia.

Overall, the majority of the medical field recommend amputation as the best treatment option for cases like Anna with a 27% leg length discrepancy that would require aggressive lengthening (3-4 lengthenings). Many people still choose to pursue the journey of limb lengthening in order to try and save their child's leg. Every family is different. After much thought and prayer, we feel the best medical option for Anna would be a prosthesis. We wouldn't feel comfortable putting her through 15 years of surgeries and limiting her mobility through much of her childhood for a less than optimal result- one that could end up in significant pain or dysfunction down the road. 

We think a prosthesis would give Anna the best chance of having a normal childhood and maximum mobility without endless hours of physical therapy, out of state medical trips, and separating her from her friends, family, and school. To a smaller degree of importance, we also don't feel that choosing to center our family's life around Anna's medical condition when there is another great option out there, would be the healthiest choice for her or the family. The option that results in a stable, healthy home environment for Anna will likely benefit her more than trying to save her leg at all costs. Children with a prosthesis are just as "normal" as other children. Anna does not need a lengthened leg to be whole or beautiful. Since children with a prosthesis have close to the same mobility as those without one, we feel that for us, the aesthetic benefits of having two real legs/fitting in with how one is "supposed" to look, and any emotional attachment we might have to to her foot is not worth the pain and limitations Anna would experience throughout her life. Yes, we would love if she didn't have to go through this in the first place, but we also recognize that looking like everyone else is not what is most important, or eternal.

Does that mean it's easy? No. Who wants to make the decision to amputate their child's leg? All sorts of questions run through my mind. Having a girl makes it even more complicated. Society is less accepting of women who are physically different, because women are supposed to be the picture of beauty and femininity. How will she wear shoes? What will she do at the beach? For the prom? How will her self image be? How will people treat her, view her, etc.? Some of these may sound like small concerns, but the day-to-day challenges are what I think about. Thankfully, we have talked with lots of other parents who chose amputation and none of them have ever regretted their decision, not even for a minute. Their children are well-adjusted, active, and HAPPY. They live full lives and face few limitations. They do all the things other kids can do. Over and over I am told it is the parent who has the hardest time with their child being "different" and wanting their child to be "normal." Talking to real-life families has been perhaps the most confirming and encouraging on this journey of decision-making.

It is not an easy decision either way, and I feel for parents in similar situations. Both options need endless amounts of love, grace.... and constant running to our Savior, leaving everything at the cross for Him to make whole.

To those of you who are reading this, and who believe what Ben and I believe about Jesus and take him at his Word, don't worry... we are not holding fast to the medical field. Man's abilities are limited. God is limitless. He is the Great Physician. And we are actively believing him to intervene on our behalf. We also feel that we need to pursue the best available treatment for Anna. This is a difficult line to walk... balancing faith with reason. It is so easy to fall to one side or the other, when we still have so much to learn and when we know that our child's quality of life is hanging in the balance. It's one thing to make a life-changing decision for yourself. It is another to make that decision for someone else.