The Miracle of Limb-Sparing Surgery

We are rocking, swaying in my Grandma’s old chair. Little Adele’s head rests softly on my shoulder. It is a snapshot of our life; every night at this time we are rocking, rocking to sleep.

Throughout history this has been done. Over and over again, we walk and dance and sing our children to sleep. Sometimes I wonder how long rocking chairs have existed, and I often wonder how many millions of mothers are performing this exact ritual at the same time. But there is one thing I don’t wonder about. I know that this snapshot, for me and my husband and our little girl, is our “miracle” of modern medicine.

In the long stretch of human history, I am just one small person in a sea of billions. The fact that I am here, rocking this child, is hardly a remarkable event in the world. Yet, here we are, a mother and a little girl, her head resting on Mama’s “magic” shoulder.

In that same long stretch of human history, there has only been one brief blip of time in which humans could remove tumors, harvest healthy bones, and rebuild joints inside of living bodies with titanium. I exist in that time. More specifically, my arm exists in that time. And so my arm exists.

In any other time, at 36-years old, I would not have a right arm. If that time was within the last century, assuming that a doctor was smart enough to detect the tumor and skillful enough to amputate my arm, I might be alive. I would certainly be thankful to rock little Adele to sleep, but I would be doing it with great difficulty, holding her 25-pound body with my left arm. I’m not sure how I would have dressed her, lifted her into the chair, or reached out to catch her cup of milk before it fell to the floor with a thud. And her face would have never touched the shoulder that it rests on now.

As much as I am thankful for my arm, the real gift may be my life. The truth is, if I lived in any other time, I probably would have died before Adele was ever born. There would have been no x-ray, no MRI, and no knowledge of the appropriate treatment for the rare cancer that grew in my arm. By the time the tumor did enough damage to require amputation, it would have already become aggressive and started to spread throughout my body.

That thought brings fear, because cancer cells might still exist in my body right now.

I take a moment to enjoy the creaking of the chair, to hear my voice singing quietly, to slow down.

There is much to be said for existing in this time. I am alive, and it leaves me dreaming of more.  Maybe a future “Mary” will have a new arm that can reach up in the air, an arm that causes less pain, an arm that never requires additional surgeries, an arm that can fully embrace a little girl.

Maybe a future “Mary” will not wonder for the rest of her life if the cancer will return, knowing that the treatment will be brutal and may not work at all.

Still, I am here. Adele is asleep. She is warm and soft, breathing rhythmically, unaware that her head rests on the bone of someone she has never met.

And my life is beautiful.



8 months old…and a new world

Hello everyone! I’m sorry I’ve been pretty quiet around here. Adele is growing from a high-needs newborn right into a high-needs infant, and her mommy is oh-so-tired. But I have some great news! I’ve decided to give her a break from me for a couple hours a day, starting tomorrow. I found a sitter who keeps a couple babies in her home. She is very friendly, and Adele knows the other baby there. We expect it to be a difficult adjustment (she is what they call a “velcro baby” – she loves Mommy & Daddy!), but I think it will be good for her. And I am really looking forward to being able to focus on work again! If things go well, I should get at least four hours a day to work.

Adele’s latest video covers May through June, right before she started crawling. That started this week! The first few days were slow, but today she has attempted longer distances and is getting faster. I decided it’s time to get her playroom set up, since she loves variety. It will be a whole new room for her to enjoy – and I filled it with toys from a consignment shop! Right now, all she does is eat most of them, but she will grow into them, and I think the babies in her play group will enjoy them too. For now, she seems to be losing interest in her jumper and exersaucer and enjoying sitting on the floor and exploring.

We took our first family road trip to New Hampshire last month for the Porcupine Freedom Festival. Jason stayed in the backseat and kept Adele entertained. I will admit to buying the dreaded DVD player so she could watch a couple of movies along the way. She loves Baby Mozart! She had a breakdown on the way home, and Jason found the part of the DVD that showed a little baby with a toy…Adele just adores that ten seconds! So Jason played it in a loop over and over again, and Adele went from wailing her head off to sleeping comfortably. Whoo!!! We really enjoyed seeing our New Hampshire friends, and Jason gave a presentation at the State House that went over well. The funny part was the protesters holding signs with his name on them. His talk was about freedom – a few people are opposed and think he is their evil enemy. ;) I made sure to take Adele along so they could see his evil spawn too!

I have been missing my family and hoping to visit soon. We have had our hands full, and I have not been able to work nearly as much as we hoped. Jason has two conferences to attend before teaching starts back up, with publications to finish for each one. So it looks like our visit will probably be in the fall – I will most likely fly down with Adele while Jason stays here and works. I’m really sorry we won’t make it sooner! You have all been so supportive, and I can’t wait for you to meet Adele. :)



Rocking

The curve of my back is different than the curve of the chair,
but she is still with comfort.
My head is propped against the creaking wood
and I feel the tightness in my neck,
remembering it hurting through the night.
I wonder if this is what my mother did,
her mother and her mother before her.
I feel the ache in my right shoulder down to my hand;
it takes me a while to become aware of the pain
and for this I am thankful.
Baby’s diapered bum is warm and soft against my belly,
and my left wrist is cradling her, comfortable.
The rocking gets softer, lighter.
One foot is solid on the ground, rhythmically moving up and down,
while the other is crossed loosely, summer free.
And I think of my mother, her mother, and her mother before her….
Didn’t my great grandmother have six kids?
I wonder if she struggled to give them all the love that they needed;
how often did her only daughter have to fend for herself?
In Grandma’s chair, I feel my body, hear my body, know my limits…
One will be all that we have, and it could be a shame,
because the second would teach us more about ourselves, about love…
and learning is such joy.
Oh how I love this little girl cuddled against my chest.
Her fingers move in the crook of my shoulder,
her left hand brushes my elbow.
I could do this for hours, sleepily,
but I’d like to write it down.
What is it with the way we try to capture moments, hold them, remember them?
I will love you forever, my sweet Adele.
It’s time to take a nap.



Happy Mother’s Day

Motherhood has given me a great respect for moms! I am wishing you all a very special day – with a little rest and a lot of love. :) I’ve had a very nice weekend with Jason and Adele. Jason took some special pictures of Mommy and Daughter – and he also let me go on a little trip to the antique jewelry store. You’ll notice I’m wearing a new diamond necklace in the photos!

The last few weeks have been SO full. My work projects are really picking up – and Adele’s life is growing by leaps and bounds.  She is now sitting up by herself (has been doing so for the last hour while I work and write) and entertaining herself a lot better. She is also eating some baby food! So far, she loves carrots, squash and green beans. I tend to put some oat cereal into everything she eats to help keep her full, and she loves it! During the day, she LOVES to cuddle us and laugh with us. It’s really precious. When she’s sleepy, she gets all cuddly and giddy and wants to roll all over us. And last night, she slept nine hours straight for the first time in at least a month.

My next step is going to be baby-proofing the house – and creating a playroom in our basement! We have joined a local mom’s group, and I’m looking forward to having a dedicated space so that we can host playgroups. I also can’t wait until the weather is consistently warm here. Adele LOVES the outdoors. We sat in the yard for the first time this week. The wind was blowing her little patch of hair, nearly toppling her over, and she was jabbering to the cars that passed by. SO cute! :-)

Lots of love to you from our little family.



Spring is here!

Family Photo!It’s so nice to see the flowers popping up and to know that warm, sunny days are right around the corner. I hope that you are all doing well. Our little family is doing what most families with small babies do, I think. We are still figuring everything out! Adele’s needs change often, as do her interests and abilities, so it’s definitely an adventure. We tried to take her off of the reflux medicine, and that was a complete bust, so she is back on it and sleeping better again. I am still nursing her exclusively, as recommended by all of the leading health organizations, and it’s going well. As you can tell, she’s no small girl! :) I think she’s getting close to 20 pounds now…she was 17 pounds more than a month ago. She is a special baby who loves personal attention and lots of holding. As you can imagine, our arms are tired!!!

I have been doing more work lately, so I hired a nice gal to help with Adele a few hours this week. That did not go so well, so we are going to put it off a couple more months before we try again. I’ve received some very encouraging advice from a few moms who had babies like Adele in addition to less needy babies. They assure me that I’ve done nothing to make her this way – it’s just her personality. Knowing that, it doesn’t make sense to try and force her to be cared for by other people just yet. I can handle cuddling her and spending that extra time with her for a few more months. She won’t be clinging to me forever!!! I can tell that more mobility is going to bring more independence her way.

Adele’s latest thing is grabbing for Jason’s tea mug and trying to drink from it. He’s let her do it a few times, and she loves it! I don’t let her have mine, because I don’t want to share my sugar addiction with her just yet. :) She also babbles a ton and loves interacting with us. I’ve started taking her out to meet with other moms and babies, which is good for both of us. All in all, life is going well! There are still times when the whining won’t stop and I want to pull my hair out, but there is so much joy too. As Adele gets older, I look forward to being more involved with all of you folks again. Right now she requires almost all the time and energy that we’ve got over here!!



Adele the Social Butterfly

Adele with GrandmamaThe past week has been full of firsts! It has finally been warm enough to take Adele out for some walks. I’ve worn her in her carrier three times to walk across the street for coffee and the card shop or down the street to the local market. I quickly learned that Adele would rather look at people than toys. She loves to see a smiling face, and she will smile and flirt with most anyone. It’s so nice to see her happy that I just walk up to people and say, “Would you mind saying hello to my baby?” Haha! People are so hesitant to talk to strangers, but Adele warms them up. I even waited in line at the market and got to the front and said, “I don’t have anything to buy today. I just waited in line because I thought you might smile at my baby – she loves people.” :-P Of course, before I even had time to explain that, Adele was already flirting with the lady.

The day that we went out in the stroller I met several moms in the neighborhood. I am really hoping to get to know them better so that we will have local friends. It’s amazing how much a baby will do for a person’s social life. I have been walking on that block dozens of times but never met anyone until the first time Adele was with me.

Adele Chewing on GrandmamaA couple weeks ago I had carpal tunnel surgery on my left (dominant) arm. Mom stayed with us to help out – thank goodness, because I was not able to lift my 15-pound girl for a week! Jason also went out of town for four days. With the changes, Adele’s schedule was all over the place. She was not a happy camper, even though she loves her Grandmama and smiles every time she walks in the room. Well, Grandmama just left Sunday,  and I started doing most things for Adele again. She has already gone back to her sweet schedule! She slept 9 hours last night without interruption and is on her second nap at 2pm. Yay! I was able to work, shower and take her for a brief walk today. Life is getting good over here! Let’s hope this keeps up. :)



Baby Faces and Parenting Wisdom

Adele in her carrierI’ve read that babies love to look at pictures of other babies, so a few weeks ago I ordered a couple of board books featuring baby faces. Adele stares at them with fascination, occasionally trying to talk to the babies she sees.

Today I opened up three picture frames that friends gave us, then pulled out some prints. I flipped through the photos trying to choose a few to frame. Adele was sitting in her bouncer on the table, watching me and whining. She tends to whine whenever we are not directly engaged with her, so I try to talk to her a lot. After I finished framing, I took the prints over to Adele and showed her a photo of herself. She grinned, then babbled, then babbled some more. I picked a different photo…more intensely connected babbling. It was adorable!

I bet there have been thousands of books published about parenting. Many of the books provide advice, backed by scientific research, that directly contradicts other books backed by scientific research! The same study, or two similar studies, can often be used to come to two completely different conclusions about the best way to parent. Today’s parents must confront so much advice and collective wisdom that we’re almost frozen in a state of indecision. After all, the studies show that these decisions we make, even for newborns and infants, can be critical to their happiness later in life! And everyone wants to give their child a happy life….but not a spoiled life – we must watch out for that. What we do today is creating (dreadful or wonderful) patterns.

Today I made a decision. To the best of my ability, and whenever it is practically achievable, I am going to do what comforts and soothes my infant. She is too young to understand that I may be spoiling her. She doesn’t understand patterns and schedules and to-do lists. All she knows is how she feels, and the only way for me to help her in the moment is to do what helps in the moment! I am going to stop stressing about parenting this little girl and just enjoy being with her. Soon she will be too big to wear in a carrier, too old to sing to sleep in her crib. At that point, we’ll teach her about schedules and to-do lists, and hopefully we’ll even make them fun. :)



10 weeks old

Hi! We’re still alive over here! :-) I even have a few deep thoughts that I’d like to share – but alas, they are lost in my new-mommy brain. Maybe one day I’ll have the right combination of sleep and free time that will allow me to write inspirationally or creatively again. Until then, this is just a life log….

Family VisitWe really enjoyed Jason’s parents’ visit last week. They cooked lots of delicious, healthy food, and Patty took plenty of shifts with Adele. Our dinners together were so nice! Adele sat in her bouncer on the floor several times and just watched us eat. I was a nervous wreck when they left, and Adele had a bad day that day, but things are improving now, and I’m starting to feel like a capable mom. I was even able to get a good bit of computer work done today, in addition to having a shower and working on the nursery. We got a special harness to hold Adele in the crib so that she can sleep on her side on a significant incline. That should help her to be more comfortable. Up until now, she hasn’t slept in her crib.

Bath Time!Speaking of sleep – the little girl is starting to sleep!!! We have had quite a time of it – getting her reflux diagnosed and then getting the right medicine in the right form.  Since we started that this week, her sleep has been better and better. She has even pushed her bedtime back two hours earlier, which means two less hours of misery. Last night she slept from 9pm – 7am with one short break for feeding. Unbelievable! She now has about four happy periods during the day, and she seems much quieter and content after she eats. I even have time to microwave some lunch, grab some laundry or go to the bathroom without taking her along. I think that might be how life is with an “easy baby.” Up until now, we have had a “not-so-easy baby.” Let’s hope the trend continues! At her last appointment, Adele weighed nearly 11 pounds, and I bet she is nearly 12 pounds now. She’s a great eater. :)

On Monday, I went for a follow-up appointment with the oncologist. It’s been eight years since cancer, and I’m still clear. The doc continues to recommend that I have revision surgery to improve my arm function, but that is a risky surgery with a long recovery, and I have a little girl who needs me to be 100%. Hopefully when she’s older and walking I’ll get some new parts.



Top Ten Things My Newborn Can’t Live Without

I have several friends who will be having babies soon, so I thought I’d write this information down. And it will help me later when buying shower presents! It’s always good to give a useful gift. :)

1. White Noise – I downloaded White Noise: Sleep Baby Sleep and Baby White Noise Sampler Cd. Then I made CDs that consisted of several tracks of the same “song.” Then I set the CD player to repeat the entire CD. This way, the sound and volume of each track is exactly the same. Most of them fade in and fade out. This method is much better than a noise machine. Most noise machines are NOT loud enough for newborns (you’d be surprised how loud they like noise!), and a lot of them are cheap. We bought one from Brookstone that died the first time I used it!

Speaking of noise, it turns out that Adele likes noise so loud that we cannot sleep in the same room with her! We discovered this because she was so restless sleeping by herself before we had the white noise playing loudly. We ended up never using our co-sleeper and moving our bed out of her room much sooner than we expected. Some babies really need their own space. She was very distracted by any movements and sounds we made, but she loves her white noise.

2. Graco Pack ‘n Play Playard With Newborn Napper Station - Adele will only sleep in the newborn napper, in her swing, or on a human. She will not sleep on a flat mattress, even on an incline. This is mostly due to her reflux, but also due to the fact that she wants to be “surrounded” when sleeping. Of course, we are going against SIDS recommendations, but we really don’t have any other option if we want her to get some sleep. This Pack ‘n Play also has a changing station, which leans to one side (we put a couple boxes underneath to straighten it out), but we love it and use it often! We store our cloth diapers and covers there as well, between the napper and the changing station.

3. The Woombie – These are great! The organic ones have two-way zippers and a nice amount of stretch. They look like straight-jackets, but they make baby feel warm and secure without binding her to the point that she can’t move. Adele always gets her hands on her face without the Woombie on, and then she keeps herself awake with her fidgeting hands.

4. The vacuum cleaner – otherwise known as her “reset button.” Simply push the button to turn it on, and screams are silenced. Yay!

5. The exercise ball – helps with pain associated with reflux and gas. We just bounce on it while holding her in an upright position. It will often settle her enough so we can transition to a rocker. And it serves as an ottoman for the rocker.

6. Fisher Price Cradle n Swing – We just got the version that was the cheapest at the time – Amazon’s prices seem to vary a lot on the different models. I can’t believe we waited three weeks to invest in this! The swing is great for making her naps longer, especially the one at about 5am.

7. Maya Tie Baby Carrier – We’ve tried a couple carriers, and this is the one that works best for our fussy newborn. We are hoping she will grow into liking the Baby Ktan as well. For the first two months, Adele really could not function without being on us. As you can imagine, there is only so much our arms could take! Wearing her enabled Jason to really bond with her – and me to get the laundry done.

8. Skip Hop Funky Farmyard Activity Mat – This is one of the few toys that has interested Adele since she was about a month old. She especially loves the toy pig that makes a jingling sound when shaken. I’m looking forward to the time that she can reach for the toys and grab them! We’ve had a lot of fun watching her “talk” to them.

9. Tiny Love Sunny Stroll Arch – We put this above our changing station. For $16, nearly every diaper change since Adele was about two weeks old has been full of smiles (or at least no cries back before she could smile)! No joke! I am going to try taking it with us when we go out and clipping it on the car seat and the stroller to see if she enjoys it as much there.

10. Pacifiers - We went two weeks without them to make sure that Adele was set on breastfeeding. Then we got some serious relief when she started using them!

Well, those are the top items that we use everyday. Adele is just starting to grow into using her Bright Starts Bouncer too. It requires that she be comfortable sitting on her own and looking around – and she’s finally at that point! The bouncer is a great “holding place” while I’m in the kitchen or doing something like hand-washing diaper covers. I can just put her in it and sit her down near me. I’ve also mentioned before that we are loving our Best Bottom diapers, and then there’s the Boppy for nursing. It’s hard to believe we have so much stuff for this tiny little baby, but life would not have been as bearable without it! Do you have anything to add to the list?



Holidays

Hi everyone! We have had a wonderful two weeks enjoying my parents’ help. Mom spent countless hours rocking Adele, who still sleeps the most when she is with a warm body. Dad even took a few turns rocking her. :) We had a nice Christmas lunch and opened lots of gifts from the parents. Adele loves looking at the lights on the tree, so I have a feeling it will stay up for a while.

We made a short video, which I will include at the bottom of this blog post, and we’ve also taken some fun pictures together. It’s been fun to follow many of you on Facebook over the holidays. I wish we could see you! Hopefully we’ll be able to make some visits this year. I imagine eventually Adele will settle down into a routine and we will all sleep more. Until then, you’ll only hear from us every now and then. :) Lots of love to all!





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