Ellie at Drumlin Farm

Ellie really enjoyed her short visit there this weekend.

Picture descriptions from top left to right:

She thought the little chicks were really cute.

The next two pics are her discussing them with Dada.

She laughed at the fancy chickens after a long stare at their bizarre head plumage. She enjoyed reading the signs and discussing what they said about the animals.

Stem Cell Therapy: to do it or not to do it?

It seems like people get on either side of this issue and stay there - like it's black and white. From my perspective, as a mother of a person who potentially has much to gain from stem cell therapy and an intelligent person, I can tell you there is nothing self evident about it. It's not a no-brainer to do it or not to do it. I have been criticized for not raising funds to take Ellie to China and get the treatment straight away. And on the other hand I was told I was nuts to even be considering it in any time under 30 years.

I was asked by Katy to provide some information on stem cell therapy and that is what has prompted this post. I wish it were the magic bullet any parent of a disabled child is looking for. Some surefire way to take away the disability, pain and uncertainty. I am pretty sure though that there are no such magic bullets in life but rather only experiences that deserve paying attention to in order to learn and become better than we are.

That said, we have been standing in the wings waiting for a significant breakthrough on the stem cell front where Ellie is concerned. It strikes us that within Ellie's lifetime current techniques will be further refined such that the improvements will be far greater than the 25% that seems to be a common number in the blogs of those undergoing the treatment.

The big question is how long it will take for medicine to get to this point? Our biggest concern is that the long term affects are not really known. It's comforting to see that a US study shows that the umbilical cells appear to be safe and have no known side effects ... but at the same time our instincts say wait a little longer and track some of the existing patients and see how they get on.

Here in the US, it seems as though the public mood is behind stem cells/against the current administration and many states have big research budgets & programs underway so I'm hopeful we will start to see some breakthroughs in the next few years. The problem is, stem cell treatments will likely be highly regulated by the FDA and it will take even longer for the treatments to hit the mainstream in the US than in other countries.

We spoke with Radar in Malibu CA/Bahamas and also Dr. Steenblock who does the umbilical transplants in Mexico. We came away with the same impression that they were both somewhat fly by night operations and didn't fully trust them. Also neither seemed to publicly track patients post-op as chinastemcells seem to be doing. China seems to be quite far ahead and they are using umbilical cord cells.

Below are a list of blogs that we have been following.
http://stemcellchina.com
http://stemcell.taragana.net/ this blog is great for tracking stem cell news reports
http://www.stemcellschina.com/blogs/Kendra/
http://blog.brookebarels.com/
http://www.stemcellschina.com/blogs/Gabor%20cp/
http://kimpoor.blogspot.com/
http://www.stemcellschina.com/blogs/Maya/
http://lukasnguyen.blogspot.com/

Dave found this clinic in Germany. They are not using cord blood but adult stem cells from bone marrow. XCell Center - Regenerative Medicine
http://www.xcell-center.de/index.php?id=&L=1

Beike Bio-tech and stem cell processing at
http://www.beikebiotech.com/index.php?option=com_frontpage&Itemid=1

So what do you think? Is it safe? Does the benefit, at this point outweigh the risk?

Any research studies or blogs or websites that any of you lovely readers out there would like to share on this topic will be greatly appreciated.

A New Way to See

Finally, after much go around and come back again, I procured Ellie's first pair of glasses this weekend. They are purple and have stars on the edges and have a case shaped like a little plastic purple handbag with the word "princess" written on it in cursive little diamontes.

I put them on her and she scrunched up her nose. I am sure -that sensation of glasses on your nose for the first time ever is a bit strange. She kept scrunching her nose and the thing tickling it wouldn't come off.

At this point, as you can see here, she almost started to cry. But Dave and I, wanting to avoid this, piped up and said, "Ellie, you look so beautiful! These will help you see better!"

She thought about this for a minute and then, in classic warrior princess style, decided they weren't so bad.

Isn't that what it's like when you encounter something new and different? Even if that something is a fix to a problem or a disability. Once you understand that life is still life, that you are still loved and beautiful. It's not so bad. It's just a new way to see.

All About Ellie

Picture description: Dave and Ellie making the most of the bad weather we encountered on our brief vacation.

It's been busy.

Now that I am off the crutches and possess an internal clock set to the school year cycles I have been making up for lost time. As a result, getting loads done but not blogging. So this post goes out to Lisa and all of you who are missing my warrior princess. Apologies to all when I said I would post a picture of her every day. Once again Dooce shows me how it's harder than it looks.

It's been all doctors appointments and therapy and paperwork getting Ellie into school. So today, just pictures with short descriptions. More thorough update this week. Thanks to everyone for your input on alternative therapies - especially the anonymous reader who actually gave me a contact name and number after much travail to get it. I will be calling them this week.

Picture description: The giving tree - probably over 250 years old in Old Saybrook, CT

Picture description: We got to the beach a good few times this year. Ellie LOVES the waves and her tent as does every other little 4 year old around. Very cute.

Picture description: Dave and Ellie apple picking

Picture description:
Ellie greeting Mary Ann, her PT, on the first day of her first full year of school. Very exciting! And she did very well.

the 21st Disability Blog Carnival is UP!

Move Over Letterman, there's a new David in town.

David has posted the latest Disability Blog Carnival comprised of many top 10 lists. It's a great idea for a carnival and David has done a GREAT job of organizing it.

I have to go now - lots of thought provoking, funny, deep top 10 lists to read. Enjoy!

Happiness of Disabled Kids V. Peers

In light of my last rant if you are wondering if a disabled kid can be as happy as a non disabled one check out this UK study here. Thanks to David for posting about this here. Turns out that all that energy spent pitying the disabled would be much better spent on ensuring equal rights for them instead. Go figure.

Also, Jacqui, one of my all time favorite bloggers, has conducted and written an excellent interview with a very successful woman who has cp and is nonverbal. You can read it here. Thanks to Jacqui for this great interview and introducing me to Glenda Watson Hyatt, blogger and auther of the book, I'll Do It Myself!

Working Life Time and August Adventures

Sometimes, probably more than I would like to hear, people say of me and to me, "You have a hard life." I have to admit that part of me hates that - the part that hates anything with the hint of pity. And part of me agrees - life is hard and sometimes mine is too. However, overall, I really truly don't think it's a good thing to judge someone else's life time. For us, we have a lot of things we do that are different than the norm. Ok, what of it?

I contemplate on a regular basis. I would describe these contemplations as little 15 to 30 minute conversations with God about my life and life in general. In one of my most recent contemplations I heard the message quite clearly, "Don't begrudge others of their 'rest life times'."

This was a good reminder for me on a day when I was feeling overwhelmed and a bit resentful of why things seemed so hard for me but easy for others - it all seemed unfair. What this meant to me, is that some times you reincarnate and have a life where you learn ALLOT very quickly. Like a really jam packed, comedy and tradgedy, on the edge of your seat thriller movie. I would call these working life times.

And other life times it's more restful. Things unfold more slowly. There is not as much hardship and things are relatively pleasant and easy. I have had those lifetimes. And I think this life of mine is not one of them. It was quite difficult before Ellie was born. I am seeing a common thread when I look at it on the whole. So be it. It's a gift from God - all of these experiences.


But when you look at my life and say, "wow that's so hard", just remember you have had many working life times (if you believe in reincarnation - if you don't no worries) and will have more. So I won't begrudge you your resting lifetime - but don't begrudge me my working life time. I am learning a great deal and there is about a million tons of love thrown in there to keep me going. So, I'm good and no less successful or important or viable or credible or competent or deserving than you. Thanks.

Ok - so that's my little rant.

Here are pictures of Ellie's first time in the Creepster Crawler. She did AMAZING. She didn't cry. She didn't ask to come out. She played with her toy phone and explored a strip of abc mat. Thanks to Jessica and Diana for helping me learn how to get her in it and use it.















The other pictures are just potraits of my 4 and a half year old darling.












And the very last picture if of me and my oldest and dearest friends. We all went to college together so our friendships are going on 20 plus years. I am so lucky to be back on the East Coast so I can hang with them. This was at our July birthday celebration - yesterday. I would never say we do things by the book.

First Time in Kiddie Pool

We have already put our booster seat to good use. This was Ellie's first time in the kiddie pool. She loved it though did not stay in it for long because it was a little chilly. Then she wanted to sit on my lap and push the boat in the pool as well as sing the 5 little ducklings song with the help of mama and baby duck. I had spread out a towel by the pool as well and she indicated that she wanted to lay down on that so we did and she was just delighted to be outside on this great summer day. I showed her the sky and the clouds for the first time teaching her those signs.

Top 10 Most Unexpected Blessings From Holland

This is my post for David's Disability Blog Carnival with a Letterman style top 10 list coming to his blog on August 23rd. (Great idea for a carnival David!)


Here we go:

The Top 10 Most Unexpected Blessings From Going to Holland Instead of Italy:

#10. I got to read a lot of poetry dissing the Dutch.

#9. I have something to blog about.

#8. I now know who my true friends are.

#7. Because of the g-tube I can completely control her nutritional and caloric intake.

#6. I haven’t had to childproof the house.

#5. She won’t run away from me in a crowded public place.

#4. I have met the most amazing people from therapists to nurses to parents of other preemies and children with disabilities – I never would have met otherwise.

#3. I see disability now and instead of fearing it and I continue to expand my understanding of it so that I can advocate for my daughter and in doing so strive to make the world a better place.

#2. My marriage, having been tested to the most intense heartbreaking limits, has remained strong and wonderful. I have discovered that Dave and I are the most amazing team and are not afraid to face anything together – that’s nice to know heading into auld age which is probably scarier than everything thus far!

Drum roll please....

The number one Most Unexpected Blessing from Going to Holland Instead of Italy is:

#1. Holland is way less crowded and the lines are shorter.





Just kidding.

The best thing out of all of this is:

#1. I have the most wonderful, loving, spiritual, emotional, strong bond with my child. I appreciate every, and I mean every little thing she does, every single moment of her life, more than I am certain I would have, had I gone down the typical road - to Italy.

– Every little thing she does is magic and I have the eyes to see it.

First Years Reclining Booster - I think she likes it!

After Ellie's Physiatrist put the kabosh on using the bumbo seat we have been sticking mainly to the kid kart but that means Ellie can't be close to the floor and access her toys easily. But recently I purchased this little beauty at Target for $25. Worth every penny!

Thanks so much to Billie for this suggestion. Ellie loves her new seat and it allows her to go in things like kiddy pools and sit closer, on her own on the sand at the beach. Infinitely more important - it will allow her to sit at the table with everyone else - especially when we visit the relatives versus being in her kid kart away from the table. It's oh so portable too.

Our life in pictures

I am going to post at least one new picture of Ellie every day. If Dooce can post a new pic of her dog every day, I think I can manage a new one of my beautiful Ellie Belly. No one would mind, right?!


This is a post to catch you all up on our summer which, obviously has not been all bad as we have managed to get some fun outings in there. More pictures tomorrow of Dave working on the French Drain. Do we know how to have fun, or what?!


Thanks to everyone too for their kind thoughts. Seems like the angels have listened to you all and my headache is gone after 2 plus weeks. It's nice to be back.


Picture Descriptions from top left to right descending:
1. Ellie reading about her hiccups which she had a bad case of the day she came home from the hospital. She was delighted to read about it - ah the power of naming.
2. Ellie sleeping the day we returned from the hospital
3. Ellie discussing the fish with Dada at Mystic Marine Life Aquarium a week or so before the seizure
4. My two cuties posing at the aquarium. I am a lucky woman.
5. Dave and Ellie at Watch Hill this same weekend.
6. Ellie reading with her Nana Jan. She is way into Grandmas these days.
7. My beautiful girl

Alive and Well and Really Tired

Hi Everyone. This is just a quick post to let you know that Ellie is fairing very well after her big scary seizure. They think at the end of the day it was triggered by the ear infection and that she had viral meningitis.

She seems to be recovered from all of that and the spasticity in her ankles is GREATLY reduced. What is up with that? Ok for silver linings.

But the more important outcome is that she is herself, her bright, loving, funny, smart little girl self. We didn't lose any of her that I can tell - thank all the powers that be. She is extra tired from the increased seizure dose. We get her levels checked tomorrow so we will see where she is. We are aiming for the 90's which if you had told me that a year ago I would have been really upset. In the past the initial medication increase fatigue lasted about 2 weeks. We are coming to the end of that two weeks so hopefully she will start getting her energy back. It's hard to see her with dark circles under her eyes and having trouble staying asleep at the same time.

I, on the other hand, and Dave, are really tired. I think I have viral meningitis too due to the constant headache I have in the back of my head going on two weeks or more now. We are not sleeping well because every little movement we run in to her. I really should take up donations for a king size bed. It's the only way any of us will ever sleep well again.

Ellie is so quirky too. She might be scared as we are for all I know. She wants us to come in to her if she wakes at night. Which we do, if we are not hovering there already because we heard her catch her breath. Then she wants a snuggle. Then if she is hungry we feed her and diaper her if that is the need. Then, when all is said and done, including reading ALL the language on the baby wipes box (Kirkland from Costco) several times she wants to go to sleep - NOW. She says, "Ahhh!" and pushes me away and curls onto her left side, forehead buried in the pillow and goes to sleep. It's a somewhat abrupt dismissal at times. But ah well, maybe she is just preparing me for her teen years when she won't want me in her room at all.

On top of all of this we are having to make some critical repairs on our ramshackle house regardless of headaches and braced up knees I have been digging some ditches. Nothing so humbling as digging a ditch.

In between all this chaos we have managed to take Ellie to the beach once as well as the farm to pet the animals. At the beach she loved the pop up tent we got her as did every little toddler in the immediate vincinty so we were blessed to have a lot of little curious visitors that day. She took her nap in it and then played in the tidal pools with dada. She loved the ocean and wanted to keep going in the waves. Then the minute she got in she wanted out because it was really cold and then after warming up in a minute or two would want to go back. Her love of the water is one of the ways we know she is truly our daughter. She was just delighted with the whole thing. She even had her first ride on the Merry-G0-Round, though I don't think we will do it again because it made her pretty dizzy. Not a good thing with the seizure factor in there.

At the farm yesterday she actually initiated reaching out to touch the sheep. She laughed at the baby goats who all wanted to meet her. She has also started signing. Really signing. She will imitate me signing and will sign back. This is a HUGE new development.

That is the current state of things. Apologies to all for not getting back to you more quickly. Looking at the computer is painful right now, it seems to make my headache worse. I will post some pictures tomorrow and post responses to everyone's comments. Thanks to all for your leads on alternative treatments for Ellie and healing thoughts.

Details of the Aftermath

Since Ellie did not have meningitis the seizure was most likely caused by an ear infection we did not know she had. She did spike a fever the moment we entered the hospital and her white blood cells were very slightly eleveated. What this also means is that her pain tolerance is so high, a really bad ear infection did not reduce her to tears but only made her a bit grumpy. The implication for me is that I need to print out picture symbols of body parts and work hard with her on understanding pain and get her to start identifying where, exactly, it hurts. Ellie knows all her body parts but she often has head pain so if the pain is in her head, ears included, she just puts her hand on her forehead. She is usually good for only one round of where's your aowie before she gets bored and wants to "play" something else so I need to get streamlined about my process.

So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.

This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.

The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.

I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.

I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.

Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.

Can I just hold her forever and never let go - would that work - would that be enough?

In the clear

We are home. Ellie is fine, though very tired. No meninigitis ever grew in the cultures and Ellie's ear infection has been more than descimated. More later after we have all had a bit of a rest.

Thanks to everyone for all their good will, thoughts and prayers. It all helps and now we are home.

Also, Happy Birthday to Dave the best husband and the best father for her children a girl could ever want!

Rainy days are in hospital days for Ellie-luv

Why is it that the rain seems to always accompany me and my family at the darkest moments? Sometimes I think it is God's way of assuring us that we don't shed tears alone. Sometimes I think it might be spirits way of making sure the smiling sun doesn't mock us when we are most afraid. Maybe the rain symbolizes the cleansing effect that the crucible has on the soul. Either way, it was raining today and today has been tough.

Last night Ellie was up from 3 to 4:30am. Dave was with her. First trying to calm her then he fed her and played with her. I heard the whole thing but was trying to sleep because I knew that he would be tired in the morning and I thought at least one of us should try for some coherence. I couldn't sleep though until I heard them both laughing and "reading the box" which is another story.

But my gut kept telling me to go in. It was a tug of war gut versus brain.

At 6:42am, I awoke to Dave's voice on the monitor saying, "Bebe, come in here somethings wrong with Ellie."

I quickly crutch in there and there she is in full on seizure very much like the last one. She is laying on her back, arms straight down her sides and legs straight out. Her eyes are deviating painfully to the right this time and just bobbing there. I turn her on her side and reach for the Diastat kit on her bedside table and give it to her. It's 6:46am at this point. Dave went to call 911 while I gave her the Diastat. He is back pulling out the oxygen and we get the cannula on her. The medics, cops and fire crew are all at our house on our tiny street by 7:51am. I recognize them. They all know about us as they have been here 3 times in the last 6 months.

The seizure is still going on. For the first time the Diastat seems to have no effect. I am calling to Ellie to come back. Telling her "mama's here, sweet pea." "come on back to mama".
The medic decides to give her some Adivan. He does and nothing changes. She is still seizing.

They get her into the ambulance as I quickly change into street clothes. We head toward the nearest hospital. They give her two more doses of Adivan in the ambulance and nothing seems to change. We get to the hospital and she is in a quiet emergency room as it is only 7:30am at this point though time seems like it is in slow motion. Why is she still seizing?

Her eye stops deviating and come to the middle a few minutes after we get there. But Ellie is neither sleeping nor awake. Just lying there. They decide the seizure has stopped but I know this is not yet the postictal stage.

So they decide to give her a loading dose of Fossfentinal in order to allow her to make it to Boston Children's hospital without seizing again. They do and she is knocked out of it. We get in another ambulance and the Children's transport team takes us in. The new medic looks in Ellie's eyes and they are not dilating. In fact the right one gets larger than it already is - and it's huge. The left stays huge with no change when they shine a light in it to check (which by the way is a great thing to do if you think your kid is seizing - if they are their eyes won't dilate properly to light). This is bad.

We get to Children's and they wheel Ellie straight into the CT scanner. Things are moving in that fast slow motion way where seconds feel like minutes because so much is packed into each moment. Finally we are in a room in the Boston Children's ER and the doctors start to come. They did bloods at the other hospital and her Depakote dose is in the middle of the therapeutic range. Her white blood cell count is not elevated. But she now has a fever. She does have an ear infection in her left ear.

They decide to do a lumbar puncture to make sure her cerebral spinal fluid is OK. We agree as her eyes are still not dilating. The CT results have come back and her ventricles are looking smaller than before so we will be able to avoid shunt revision brain surgery that would be needed if she had increased inter cranial pressure. Ellie is being a very brave girl.

They use Emla cream to numb the skin and then put in a shot of Lidocane. That shot really hurts Ellie and I silently question it's effectiveness. There is a guy named Wally holding Ellie on her side in the fetal position to make sure the vertebrae between which the doctor is going to thread the needle stays open. Ellie wiggles though, very strongly then goes limp and keeps doing this. Wally has to be very strong. The Lidocane is in and she proceeds with the lumbar puncture, I am holding my breath and Ellie's hand. Dave is there telling Ellie she is a brave girl and that she is doing well.

This procedure takes 10 minutes with the needle in Ellie's spine while her CSF drips maddeningly slow into 4 different vials, 4 cc's in all. Then it's over, band aid on her back and Ellie checks out and thumb in mouth goes straight to sleep. The results come back and hour later and one doctor tells us that the white blood cell count is low but the protein levels are somewhat elevated. Whoever taught this doc comes from the "cushion the blow" school of thought because when we finally talk to the Neurologist he tells us her protein level in her CSF is 268. Normal protein in the CSF is 40. So the words "slightly elevated" don't come to mind. "Freaking through the damn roof" would have probably been a more accurate description. They decide that though her white blood cell count does not confirm it, they want to treat her as if she has meningitis - viral or bacterial. The scary part here is that if she does have meningitis she will have to have all her shunts removed and replaced. Removing some of her shunts could easily cause her more brain damage.

They also decide to up her seizure meds and give her a loading dose which knocks her out even more. Then they give her two huge doses of antibiotics. I feel like my little family is in some sort of pharmaceutical hell. But what can we say? She does have a fever, she had a seizure that lasted almost one hour and her CSF protein levels are through the roof.

It's 10:13pm as I write this. I just got home from the hospital. Dave will take this shift tonight. I will take tomorrow night because he has a training to attend on Monday morning. I am happy to say that for a couple of hours before I left Ellie finally started to pull out of it. She wanted her videos, and for me to sing the 5 little duckling song, and she started chewing her thumb and making her hungry sound. When we were finally allowed to feed her she kept all her cereal down then went promptly to sleep again.

Please keep her in your heart tonight and wish her a speedy recovery. She needs some angels tonight to guide her through this storm.

I will keep you posted.

You are my I love you

This book brought tears to my eyes. It was a gift to Ellie and Dave and me from a friend. It's very poetic. Ellie wants us to read it to her every night a few times of course. Because, and this is the 4 year old creed I have decided, if something is good once, won't it be even better 50 to a hundred times more? So share it with your four year old with caution.

You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001

I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.


Is that not the sweetest thing? Just had to share this. It's one of those things you only get to encounter when you have a little kid.

From the other side

It’s done. I had a great day yesterday. Thanks to everyone for your support – it made all the difference. It’s weird. Usually on birthdays, I don’t feel any different. This time it feels different. Like I have turned a corner and it is the biggest relief. 40 was this number sitting out there that I was dreading. I took a look at the nature of this dread and realized that I have achieved many of the things I feared failing at that this dread used to be connected with it. I used to dread being unmarried and childless once I hit 40. Well, I am neither. I used to dread being down and out and still incredibly broke like I was in art school when I hit 40 . Well I am a lot better off than I could have ever imagined. I am fortunate in so many ways. Just because I haven’t written the best American novel, been featured in the Whitney Biennial or consulted to Presidents and Heads of Parliament or more seriously attained my Ph.D. doesn’t mean my life is a failure. I actually feel really content and incredibly grateful for Dave and Ellie especially.

There is nothing more to dread. I have never dreaded 50 or 60 and have in fact looked forward to 70 and 80. Why? Because I have known, including my grandparents, some very engaging, hip 70 year olds. I have seen Dave’s 80-year-old grandmother travel to Australia with a friend - you know for a little adventure. They have all taught me that once you give up worrying about life and get on with living it, it’s a lot more fun. And, that getting older age wise does not mean you have to be old. It’s all in one’s head. Which is where I have been these past weeks and am glad to be leaving.

Speaking of fun, yesterday was I think the best birthday I have had in a long, long time. It’s the first one where I didn’t care about gifts but was just delighted to have contact with friends and family. Dave spent the day with me and it was great to be alone with him which is a rare gift. I got some unexpected flowers from Dave and Bonnie – thank you both! And I got several phone messages containing various renditions of “Happy Birthday to You”. All of which made me laugh and warmed my heart.

A twenty-something even hit me on when I was leaving a shop while waiting for Dave. It was one of those, “I still got a little something” moments.

My favorite birthday email was from my friend Rick who has been very instrumental in keeping me humble over the years. He strives every year to be the first to wish me a Happy Birthday and accordingly this email was sent just after midnight. I can’t share the whole message but the subject line was: “Happy 40th birthday old woman”. So you get the picture.

Thanks to all and back to the usual programming since I have just completed the last Harry Potter novel – which was so very excellent!

Anything more is a waste of spirit

Lately I have been a bit narcissistic, really. And this post is a symptom of that. My birthday is tomorrow and it’s a big one. It’s not a fun one to be spending on crutches and unable to fly around and make my world as good as I usually do. It’s not a good one to be unable to drive and unable to carry Ellie from here to there and everywhere.

I have always been very connected to my body. I have always been able to make it do what I wanted. For me my legs are my wings. I fly on them. I am superwoman with legs. I can jump tall buildings in a single bound while balancing baby and marriage and work. But now I only have one that is working well and because of that my hands are not free either. I feel hobbled. I am temporarily grounded. It’s been six weeks now – that's a long time.

I feel old.

Sometimes it seems like life is all about suffering broken up now and then by bits of joy solely designed to recharge you for more suffering. I have always been on the joy side looking for silver linings while at times dipping deep into the suffering. Looking for silver linings is a matter of survival like breathing. I learned that skill from an early age. It got me this far. But somehow seems harder to achieve lately. I feel bad about feeling this way. I feel like I am at a point in life where I need to focus only on others. It seems like any time for grief is a waste of spirit. It’s like my life, as I knew it has died. Its time has passed and now my focus is on getting Ellie’s brain healed. A task in the face of which, I am so intensely overwhelmed.

I gave up coffee too, in fact all caffeine in order to ensure maximal healing of my knee. My knee has to heal perfectly. It has to be able to lift the extremely fast growing girl now 30 pounds, someday 40 someday 50 and so on. I have to be strong! But I am no more a coffee achiever. I have to feel my fatigue and deal with it in the moment instead of borrowing energy from those wonderful little beans at the expense of my body. It’s hard living in real time but I am glad I am.

I haven’t felt like posting much for these reasons. I am feeling shallow, hollow, frustrated at my incapacity and infinitely ashamed at being so narcissistic and disconnected from all I hold dear.

I am missing Ellie. Missing being her everything. Missing being able to be alone with her and do our thing. We are lucky to have had nursing help because I can’t pick her up. So when Dave is at work I need help with her. For that I am truly grateful. But I miss her just the same. I miss our life and it’s hard having people in our house all the time even though we are truly blessed to have wonderful nurses to care for Ellie when I am out of commission. But in terms of this chapter in my life, it all feels very feeble.

Tomorrow I turn 40. If you know anything about my birthday superstition you might think I would be seriously worried. The good is that Dave is taking the day off to hang with me. We will also see my doctor and find out if he will let me drive and give me a light at the end of the crutches tunnel. Wish me luck and good thoughts for a better year. Because if you haven't noticed yet, 2007 has pretty much been one big kick in the ass, so far...

Happy Birthday to me!

Ryn Tales turned one yesterday!

In honor of my first year of blogging under my belt, delurk! (or not).

I think most of my favorite posts were all the ones from last summer. If you are wondering how to get to know any blog, go to the very first posts and see how it all began.

(See you all as soon as I finish the Deathly Hallows which as proved to be rather GRIPPING right from page one!)

Ellie's ever expanding horizons

Thanks to Kristin, Ellie's teacher extrodinaire at New School for these great pics. For those of you who understand Ellie, you will know that getting her to participate in anything of this sort is nothing short of a complete and utter triumph. Ellie has been outright refusing to do any sort of craft thing that involves touching anything even slightly gooy since she was about 2.5. I am so delighted to see her participating in that quintessential kid activity of getting one's hands dirty in glue and paint. Here you can also see pictures of her playing with a tamborine - another first. Ellie has huge auditory aversion issues. The fact that she is now participating in music classes though she still has auditory defensiveness is a big improvement. She even gets mad when the song ends and has been using her "more" button to let everyone know they should sing it again, thankyouverymuch.

Thanks to everyone at New School for all the wonderful things you do for Ellie. It is opening her world in the most profound ways!

Image descriptions from top then left to right:

1. Ellie doing vestibular work

2. Ellie doing tissue art and touching the 'sticky' board

3. I. helping Ellie work with the tissue paper by first touching it and using hand-under-hand technique - take note Sapna as to what hand-under-hand looks like!

4. Ellie enjoying playing with the tamborine during music

5. Elie picking an animal

6. Ellie laughing at her egg

7. Ellie and her classmate learning to share the wiggles. He is also the same little boy who occasionally will pull Ellie's pigtails and take her toys as well as get mad if she doesn't pick him during circle time. Needless to say, we adore X.

8. Glue touching girl

9. Worn out from all that learning and doing catching a cat nap.

8 random things about me

I was tagged by one of my favorite Bloggers, Retired Waif, to tell 8 random thing about me. Here you go:

1. I love trees.

2. I have logged over 100 hours as a private pilot – some of those hours learning to fly a Citabria (small, tail dragger acrobatic plane) somewhat like this one thanks to my now long lost friend George. I flew to NY once and my route led down the Hudson River and I did turns around a point using the statue of liberty as my point. All before 9/11. This was one of the best times of my life. I LOVE flying. I got to fly a glider once and that was amazing.

3. I have been proposed to 5 times and engaged 3 times. Three times a charm!

4. Every time I fly to England I weep because it feels like I am coming home. I don’t live there so it’s actually really embarrassing so much so that sometimes I pretend I am weeping because of the book I am reading. Humiliating really.

5. "Ryn" as in Ryn Tales comes from the last three letters of my first name, KathryRYN. And no one calls me that in life. (I hear a couple of Ohs! out there... ;-)

6. Within a month on either side of my 28th birthday I sold or gave away the bulk of my possessions, sold most of my paintings, parachuted from 5,000 feet on my birthday – July 24th - and drove from western Massachusetts on the East Coast of the US to California (on the west coast) landing there one month later with $250 dollars in my pocket to start my new life.

7. The biggest, best, soul expanding transformation I have lived through has been the birth of my daughter.

8. When I was tagged with my first Meme I thought it was pronounced “me me”.

I tag David, Kay, and Gordon.

Disability Blog Carnival #18 is UP and it's Awesome

Here is a description of the carnival from her blog:

" Disability Blog Carnival #18,
a/k/a
The Disabled! We’re just like YOU!!!!

So, that said, this edition of the Disability Blog Carnival is designed to explain the the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found ..."



I can't tell you, Retired Waif, how much I LOVE this topic! Great Carnival. Thanks for putting this together, especially, while in false labor! I hope all is well and that you have a baby, not only in your Victorian cart, but in your arms as well, safe and sound.

If you have not already been following Retired Waif's blog you are in for a treat. She is one of the most introspective, thoughtful, witty writers out there who always makes me think and see things in a new way. I truly love her blog. Enjoy!

Ellie's first REAL beach day

Today we went to the beach. That simple enough statement represents a HUGE accomplishment on our part! It's Ellie's second time at the beach ever and my second time going since before she was born. That's something considering how much I love the water and as a former surfer. It was an amazing afternoon of firsts for me and Ellie. Thanks to Linda forever and ever for making this happen. I would have never found this lovely beach or been able to go without you! Since it is a fact that I am on the verge of going bonkers home bound on crutches and under doctors orders not to drive you have done a great deal for my tenuous grip on sanity as well!

We went to Nataskit beach which was not crowded and accessible albeits crumbling cement, storm crushed ramps. Crutches and stroller made it to the sand alike. Beautiful, hard packed, lovely fine, soft sand. Ellie enjoyed feeling the sand on her feet and we played where are Ellie's feet a lot. She would reach down and grab a handful of sand on her feet and get excited and throw it everywhere! It was GREAT. And I was impressed that she just reached down to touch a thing she had not seen for a couple of years - sand. The water in the tidal pools abandoned by the outgoing surge was warm as a bath and placid as one too. She reached down to pull up handfuls of wet sand. I wish we could of just sat her in it to play. We couldn't however because we were really concerned about getting sand in her g-tube. I did wrap plastic wrap around her belly but I could see sand getting underneath it. The last thing you want going into her tummy is sand. Next time I think I will cover her entire tube and dressing with duoderm and make a tiny slit over the feeding port and then cover that with duoderm again so that I can access it to feed her. (see the things we deal with that no parent in their right mind would ever consider!)

If anyone has a kid with a g-tube can help in this matter I would dearly love to hear what you do to keep the sand out.

At the beach, ever a learning opportunity, we discussed the Atlantic Ocean and who lived there including shrimp, crab, lobster, whale and fish. Ellie saw waves and reached down to touch them. She even got a little sun on her face for the first time - the slightest of pink blushes which I think is already turning a golden brown. She definitely inherited her fathers' great skin!

We finished up the experience by taking a look at the horses of the carousel. Ellie was not bothered by the music which was also not too loud (more evidence of the good work they are doing with her at New School). Though we didn't ride them this time (because I don't want to do too much too soon considering her sensory integration issues) she was happy to go up to the horses and pet their bejeweled and painted necks. I think she really liked them. We will go for a ride eventually, baby steps but certainly in the near future considering Ellie's smile at petting the horse and the fact that she was nonplussed by the environment. I can't wait. I love carousels and haven't been on one in years!

I am happy too to have found a local beach that is so pretty and so accessible. No more sitting around sweltering in summer's cauldron! Thanks Linda for a GREAT day!

Ellie Learning To Use The Gait Trainer

Ellie is learning to use a gait trainer. This one is a Riftin. Ellie works very hard for her PT, Mary Anne at New School.

Go Ellie!

Blog Carnival #17 is up at Planet of the Blind!

I am so behind in my reading! Lots of excellent, heartfelt and hillarious posts in this one folks. The theme is Laughter, the best medicine. Right on!

Steve and Connie have done and amazing job at organizing it. Just wonderful. You can find it here.