Tuesday, July 29, 2008
1. No, Tegan is best friend (when I suggested another friend to be the best).
2. I want to see Logan too (when Max suggested playing with Tegan).
3. Andrew's sad. (When discussing a child who fell at school. She said this about a hundred times over the weekend).
4. Doggies funny. Go Ruff Ruff Ruff. They're laughing.
5. It no works. (When pointing to her leggie) There is no foot there.
6. I no like tuna fish.
7. I love you, Daddy.
1. I have an idea (one finger up)
2. Mummy, I like blueberries. I like peas too. I like corn too.
3. I want a leggie too, like Madeleine.
4. I hears that. Is that a hellacopper or a hairpane?
5. It's dark. It's no light. The whole world is nigh-nigh. (This at 1 am)
6. Watch this, Madeleine. (doing anything silly)
7. Swiffer, where are you? (My son is obsessed with cleaning, if you didn't know that already. No one loves the wood floors at our house more than Max).
Monday, July 14, 2008
We are completely moved into our new house but not even close to being unpacked and settled. Phew, it was a lot of work. Note to self: Next time hire movers...
Although the Ms love the house (They have even asked if we get to go to the 'new house'. I tell them over and over that the new house is now our house.) they are not sleeping so great. I'm that the adjustment to their new room is difficult but I also think they can 'sense' that things are chaotic and influx.
On the upshot....
Michael and I are digging all the space we have! The kids are digging the yard. They love hanging out, eating their breakfast on the awesome new picnic table (a gift from Brooke, Travis and Tegan), playing with their fantastic bubble wands (courtesy of Joy and Sofia) and their trikes. On warm days we fill up the pool (thanks to Jenna, Brad and Logan) and cool off in the hose.
I'm not sure how we ever did it without the space of the house and the yard to walk in. This morning we collected pine cones that had fallen from the trees. Sometimes we pick weeds and dig in the dirt and today it was a real treat when daddy mowed the grass.
Our backyard and patio is now a toddlers dream. Thanks to Mommy's attentive thrift shopping I have equipped our space with a sandbox (we have yet to put the sand in it though), matching pink and blue toddler scooters, and our newest edition. I step 2 climber with slide. Madeleine was calling it "the playground". Too funny. My poor deprived apartment kids!
As with everything there are downsides. Pros and Cons.
-no shared walls
-no carpet in the main living spaces (makes messes clean up easier)
-Huge playroom for all the toys so that Michael and I finally feel that adult space is adult space and kid space is elsewhere
-grass and gardens
-patio that gets a lot of light
-pulling into our driveway
-a mud room
-new counters, cabinets, appliances
-Helpful fun neighbors with fantastic kids!
-walk in closets
-old house makes picture hanging difficult
-old house is creaky
-being a street level takes a while to get use to
-finding out our house use to be a 'crack house' or had some other creepy illegal activity. uck.
-with so many trees around the house can feel dark (a pro is that it stays very cool)
You have to think that we use to live in a building that was built in 2000 and this house was built in 1930. Still the pros outweigh the cons.
Sunday, July 6, 2008
The second option is reserved for very minor cases. There is no surgical intervention but rather the patient is fitted with orthopedic devices to stabilize the leg, ankle, foot. A shoe lift is implemented to bridge the limb length discrepancy. This is the option I hoped for. But Madeleine simply was not a good candidate. Really can you imagine operating a vehicle, be it car, bike, scooter or trike, with 5-6 inch shoe lift?
The third option comes into place when the problem is not super severe. If there is a good foot and a good ankle and some other preferable anatomies the leg can be lengthened. I haven't talked about that much on this blog since it is obviously not the option we chose but I will try to explain it as best as I can. Basically the child undergoes surgery to reconstruct anything that needs reconstruction. This can include osteotomies (bone cuts and correction), moving muscles around, cutting tendons, whatever. Then the bone to be lengthened is broken and pins are screwed into it. The child wears a fixator and the pins are turned daily as to stretch the bone and make it grow as it heals. This option is more of an 'option' when the child has a fully formed foot, a stable ankle and other anatomies.
The fourth option that can seem more 'severe' or 'drastic' is amputation. You can imagine my horror when this was mentioned as a form of 'treatment' for fibular hemimelia. Try to picture your child as an amputee! As it was explained to me while I was pregnant, "we can grow bone forever but asking the muscles and tendons to do the same is a whole different story. Sometime amputation as reconstruction is the best option".
Imagine that you are faced with these choices. One and Two are obviously not great options. You need to choose a treatment. You need to make this decision for your child. Yes, it is life altering. Yes, your child will never be the same physically (and dare I say emotionally) either way. Surgery is involved. Hospitalization is involved. Pain is involved. Stress, emotion, tears run wild in your mind. What do you?
Do you wait and see? A treatment option that many parents choose.
Do you consult all the doctors you can find? Seek a second, third and sometimes fifth opinion?
Do you travel to new hospitals, countries, conventions?
Do you read every newspaper article, medical journal, Internet site?
Do you consult other parents who have gone through this?
What do you do? How do you decide?
Imagine that every time you mention this 'decision' to others they gasp in horror. They tell you that they hope you will seek another opinion. They apologize and again you see the look in their eyes that tells you that they are so glad this is not happening to them. And somehow, you feel ashamed, like you did something to cause this. Like it is your fault.
Some have mentioned that only if the foot is really 'non-salvageable' should you amputate. Some have said, "I cannot imagine cutting off a piece of my baby". Like anyone can imagine that! Some have said that if you don't have solid financial resources amputation is your only choice. As if any parent would let money stand in the way of getting their child the best treatment.
Unlike many parents I knew that Madeleine had Fibular Hemimelia before she was born. I read the articles, searched the Internet, contacted families, consulted doctors and worried more than any mother should. I also prayed. I prayed hard that my baby would be a candidate for a shoe lift, lengthening, maybe she would be fine...
Thursday, July 3, 2008
Wednesday, July 2, 2008
How do you react?
Shock, horror, disgust, anger, sadness, desperation.
If you are religious you will pray to God that he will change your baby. He will take away the deformity. He will heal miraculously. If you are one that walks with guilt you will wonder what you did wrong to bring this about. If you are a dreamer you will conjure ideas of the future. You will dream of the future of technology. You will research, hold your breath, talk to other families. You will travel, spend money, seek the best doctor, professionals anything to change the outcome of knowing that your child will grow up different from others.
Now you find out that they will indeed not be what some consider normal but they will be happy functioning people. They will be smart, social and attractive. They will do almost everything that all of their other peers and siblings do. They will have a wide open future. They will have possibilities and maybe, just maybe, this 'disability' will benefit them.You feel good about the positives but continue to worry about the negatives. You are happy that there is nothing 'developmentally' wrong with your child. You are content to know that your child is bright and capable. You are distraught about the abnormal categorization of your child. You know that they will always be looked at differently. That people will have a hard time getting past the 'deformity'. That people will always ask questions and be curious. They will want to know the details, the reason. Inside they will hope that they can prevent the same thing from happening to their children. They don't want to go through this and thank the heavens daily that they don't have to. "Thank God," they will say, "that my child is normal, beautiful, capable, perfect".
You know that people think this to themselves because you would have thought that if you were in their shoes. You know that they think this because you can see it written on their face. They are sympathetic and kind but you know anyway.
You look at other babies and children and think about how you got a bit shafted on this one. Every time a baby is born you look at their tiny bodies and try to see if they resemble your baby's deformity. You look for likeness, you seek out families that are going through the same thing. You feel like a kindred spirit to people who parent or are of the same kind. Even if you would normally not run in the same circle.
You are in a lonely place.
Tuesday, July 1, 2008
Michael and I have lived in a very nice apartment for 5 years now. It is not small and it is not dumpy but it is an apartment. We live on the fourth floor, the top. It has vaulted ceilings and is quite large (about 1000 square feet). There is an elevator and it is a very new and clean building. We live in a fantastic neighborhood that we adore. The problem is that we have no yard, no green space, no garden. We have several parks close, a few in walking distance but it doesn't feel the same as letting your kids lose in the back yard.
For a while we have been talking about finding a house to reside in. We have looked at many and considered a few. Michael, if you didn't know this already, is very picky. His favorite phrase when looking at a house for the first time is, "it's a dump" or just simply, "dumpy". Well, the first words he uttered upon seeing our new house was, "we'll take it".
Located conveniently a mile northeast of our current residence, the house is in the charming Maple Leaf district of Seattle (north of Greenlake). It is a 1930s Craftsman style with a large yard, fenced back yard, cute flower beds, new upgrade to the place and a super duper daylight basement with a huge playroom for the kids.
Moving with two two year old toddlers.