Sunday, October 30, 2011

Waiting Room turned Party Room - 7, 5, 65!

Every year we have dinner with Mom and Jim the night before they leave for their seasonal migration to Tucson.  Since both grandparents and both children have Fall birthdays, the dinner is our time to honor the birthdays as a group.  The name of last year's party had much more of a ring to it, the 6, 4, 64 Party.  This year we referred to it as the family party a few times during the planning stage.  We then realized that we liked using the age numbers, even if they don't flow as well year to year. 

So I give you the 7, 5, 65 Party of 2011!  

We held the party later this year, since mom and Jim delayed their departure by a month.  They stayed in town in order to be around for the soccer season of their three granddaughters, who were all on the same team!    

Last year I went with a red theme, this year I went with silver.  My color choices are often made by what I already own.  I had some fabric that I purchased to recover a chair, but never used, which became the table runner.  With the addition of some silver paint on their leaves, my existing white pumpkins became our centerpiece.  Spray painting can get addictive, I bought some acorns and painted them to go with the pumpkins.  Realizing there was still some paint left, I painted small pumpkins silver to make place cards.  They almost didn't make it to the table!  It was a very windy day when I painted them (same day as the party).  I had them out side drying when Max announced that trash was blowing through the yard.  It was a mad dash, but I caught them all! Who would have thought that place cards could provide exercise?  I think the hanging of the numbers (the birthday guests ages) will become an annual tradition.  The kids really get a kick out of that, I am not sure their grandparents are as thrilled.  I used the same silver wrapping paper to make them that I used for mom and Jim's gifts.  

Caroline decided a special dress was in order for the evening and selected a very pretty silver and blue one from her closet.  She was trying to match the table, I love this child!  Since she was sitting by the front door already, waiting for everything to start,  I talked her into a few photos.  As you can see from the photos the wind that nearly took our place cards was still blowing.

Max soon joined Caroline by the front door to wait for Nana and Papa.  I really should have taken a video of them rather than photos, their delight and excitement was a great way to start off the evening.

After dinner Mom, Jim, Caroline and Max all exchanged their birthday gifts.  When I asked Max months ago what we should get his Papa, he said "A Nerf Gun!", without hesitation.  He assured me Papa loves guns and has loved them since he was a very little boy and we HAD to get him a gun.  I asked him what Nana would want.  His response, with a shrug was, " know, girl stuff."  Jim was indeed thrilled to get his Nerf gun and I made sure my mother got some nice girl stuff!

I can't get enough of evenings like this one!  Seeing the kids so joyful is thrilling for me.  Ray has often commented over the years how Max and Caroline really know how to LIVE life, and they do.  They eat up every minute that is served to them.  I thought in this parenting role I would be the one setting the example, not in this case.

Miracles for Mito Letter and Preface by Heather

I wrote a letter to Miracles for Mito to go along with all of the party donation checks.  Samantha's mother Heather, the founder of Miracles for Mito, posted my letter on her blog and added a preface.  I wanted to record her preface and my letter on this blog for my own memory, so I have copied and pasted it below, rather than supplying a link. However, I encourage all of you to visit Heather's wonderful blog to learn more about Samantha's life and her family's journey.

For everything you've done, you know I'm bound,

 I'm bound to thank you for it

This post is from the amazing Martin Family. When I think of the good things Samantha got from preschool I think of Caroline and Max and the very special gifts they gave us. 

Samantha had a 'dalmatian' coat that was spotted. Max would meet her at the preschool door saying 'Puppy coat! Ruff, ruff! Puppy coat!' and he would help take the coat off. 

I still cannot give that coat away. 

I never knew two small children who knew my daughter....loved my daughter they way that they did. 

What Mom, sweet Rebecca does not mention in her post is that their fabulous party raised over $500 for our foundation. 

Two sweet little people decided to forgo their birthday presents and raise this money. My favorite, most-enduring story is that Max did not want to give us the money. He wanted to wait until he was an old man, until he went to heaven. He wanted to give the money to Samantha himself. 

I am amazed. 
I think maybe we all saved each other. In Caroline and Max's world, Samantha has not gone anywhere, she is a fairy, a smile, a rainbow, a bit of light and they carry her in her heart everyday. In my world, they remind me to live my life with her, on my shoulder embrace who she was and the joy she can still bring.

Thank you Martin Family- this is their post....and this is the Martin family, could they be anymore beautiful?

Dear Miracles for Mito,

Two years ago I carried my son Max into a special needs preschool for the first time. I carried him because even at almost three years of age he lacked the energy and coordination to walk very far. There was another child being carried in that day. She was a few months older than Max, but she looked much younger. She was cradled like a baby in her mother’s arms. She could not sit up or hold up her head very well. I watched them.

The mother, Heather, looked so pulled together, so happy, despite what was obviously a very tough situation. I felt embarrassed. Here was someone dealing with so much more than I was and she was handling it so well! What was her secret? I wanted to talk to her. I was desperately lonely in our world of unknowns. But I could not talk to her, I didn’t know how.

The months went by and my older daughter Caroline fell in love with that little girl, sweet Samantha. Every day at pick up she would go over and sit near her and watch her. Sometimes she brought things to show her, even though she was not sure if Samantha understood. Caroline connected with Samantha in a way I will never quite understand, they just clicked. Max too loved Samantha, he shared his mornings with her for a whole school year. Every day he would report to me if Samantha had cried. “Antha cried.” He would say with the saddest look on his face. He was so concerned for her. I was told later by Heather that he even tried to stop her from picking up Samantha’s wheel chair one day. He was not sure who Heather was and he was not about to let his dear Antha’s chair be taken away.

Finally in the Spring I got up the courage to talk to Heather beyond the small chit chat that happens in the school doorway. Max was due for an MRI and a Spinal tap at Children’s Hospital and Samantha was there at the same time. Samantha was hospitalized due to another of her many medical battles brought on by mitochondrial disease. Heather took the time to talk to me and my husband as we waited for Max to get out of radiology. I had meant to be there for her, to try and be supportive of their situation, but she was the one who was there for us. We agreed to chat more and to get together.

When Samantha was out of the hospital they came over for a visit. Caroline stayed by her side the whole time. The very first book she read on her own to anyone was read to Samantha that day. Meanwhile Heather talked with me and encouraged me. Heather understood, like it says on the Miracles for Mito web site: that no one should ever walk this journey alone. By that time we knew that Max had a rare metabolic disorder, but we also knew there was a treatment and that he had a positive future. I was slowly finding my way and accepting that we were on a different path in life and that it was ok to be on that path. Maybe I too could be that pulled together woman walking into preschool with a smile on my face.

It was only a short month later that Samantha passed away. It devastated me beyond description. Samantha and her mother had changed us. They had loved us and encouraged us even when their own plate was full to overflowing. Samantha had touched my children in the most beautiful way. They adored her. Heather and Samantha had shown us how joy is to be had even when life is tough. They gave us a gift of a new way of looking at life’s trials. 

We wanted to give a gift back to them. My husband and I had planned an early birthday party for the kids to try to take advantage of the nice weather. I asked Max and Caroline if they would like to forgo presents to raise money for something that could help other children. I gave them choices; I wanted it to be their decision. Without hesitation they both agreed that they wanted to raise money for Miracles for Mito. In the past year it was a rare week that went by when one of them had not mentioned Samantha. 

The party was a true celebration for our family, it was about more than just birthdays. It was about the journey our family had taken over the last few years. It was acknowledging our fresh perspective on life. A perspective that Samantha herself had deeply impacted. 

We no longer walk alone and we don’t want any other Colorado families to have to walk alone either. We are honored to pass along the birthday generosity of our friends and family to Miracles for Mito to further that goal.

Thank you,
Rebecca, Ray, Max and Caroline

Sunday, October 23, 2011

Max - a year later!

That smirk means he is planning the next Nerf Gun he wants to purchase!

I have had this post mulling around in the back of my mind for awhile now.  Max has been on the Modified Atkins diet for well over a year and it is time I dedicated a post to him and his progress. But I keep putting it off.  

The diet has become second nature to us and life is chugging along with little to no Glut 1 drama.  However there is often this nagging little voice I hear in my head that I still have to continually shut down.  I hear it clearly when I am tired or drained.  I hear it blaring when we have forgotten to feed Max or forgotten his medication.  It is then when I am hit in the face with the reality that my now seemingly healthy little boy, is only healthy when he has the right intervention.  Max's diet is the fuel for his brain.  If you take away food for too long, instead of getting a slightly grouchy person, you get something that resembles more of a wild animal than a human.  That sounds dramatic, but for anyone who has witness it, they can attest to the change.  Of course we try to NEVER let this happen.  But everyone once in a while it does.  Max needs to eat about every 2 1/2 hour when he is awake, so getting a bit off track can happen if I don't watch the clock or if he does not tell me he is hungry.  It is then that I remember that there is no cure for Glut 1, there is only treatment.  And that treatment is only as good as the people administering it.  

On my down days I go down the rat hole of future fears.  I forget about all my Living in the Waiting Room talk and I worry about the future.  What if Max refuses the diet when he is older and in more control over it?  The Modified Atkins diet has changed Max's life in incredible ways.  I guess that is why I worry about the diet going away some day, most likely at his choosing.  I know that is borrowing trouble, but the average mom has to worry about scary things like their child drinking, smoking or trying drugs.  I have to worry about all of that AND my child saying, forget all this I am going to have a slice of cake!

So there you have it, I worry about the future so it makes it hard to write about Glut 1 sometimes.  I want to forget about it and enjoy my joyful, one of a kind, amazing son.  I want to freeze these days of me spooning butter into his mouth and wiping bacon grease off his hands.  I want to always have control.

But I won't always have control.  However, I do have today and today was great.  In fact this whole last year has been amazing and that is where my focus should lie.  The diet took some tweaking.  It took Max's team at Children's Hospital awhile to get the right number of daily carbs set, it now sits at 10, and the right amount of Levo Carnitine, 330 mg tabs, 5 a day.  Once that was set and the Ketocal drink was added, we began to see noticeable change.  We had seen change prior to this, but it was at this point, around month 10 on the diet, that Max really took off.  

He can now

....drum roll....

go up stairs with out holding on to anything!  He achieved this almost exactly on year anniversary of the diet.

This is such a milestone, I just can't express the joy I feel as I watch him do it.  He is still very halting, but he is doing it and I love hearing his sweet voice say, "I am going upstairs just like Daddy does."  For the record the rest of the family goes upstairs without crawling, but I suppose we don't register to Max as much as his hero Daddy does when it comes to this athletic feat.
Max riding Ranchie.  He loved it!
Max's energy levels are very much improved.  He finally stopped napping at the beginning of the summer.  The sentence "Max, stop running." also entered our vocabulary!  I took Max and Caroline up to Estes Park to go horseback riding.  To my delight he lasted an HOUR on a horse.  I was floored.  His core is so much stronger!

Ray had to launch Max onto the Slip and Slide, but once going...

He loved it!

Neurologically Max impresses us on a daily basis.  Over the summer he was taking a T-ball set apart, when I asked him what he was doing he said,  "mommy I am fashioning a weapon."  Last week in the car Caroline was asking a question about seeds, something she and I have been studying.  I was trying to remember what the outside of a seed was called and from the back set I hear Max pipe up, "seed coat".  Max is often near us when we are doing school work, but he is always playing with something.  I am surprised and pleased by how much he is learning indirectly.

Max's body is physically handling the diet quite well.  At first he was not gaining weight in pace with his height, but now he has caught up.  His BMI is a touch high, but not too bad when you consider his diet is over 70% fat.  His cholesterol is acceptable and his bone density scan a month ago came back great.  He has blood work every three months.  For the most part the blood work has always come back normal.  The only issue we saw there was with his low carnitine levels.  Now that he is on 5 pills a day of the Levo Carnintine his levels are back to normal.

As we work through the second year on the diet, I hope to see the elusive jump and squat skills emerge.  Max's fine motor skills are also still quite week.  I hope to see more dressing skills and crayon holding and maybe even some coloring in the near future.  I have no doubt he will get there. And if it does not happen this year, that is OK.  I have fully embraced that he is on his own timetable. 

This post may be almost three months late, but I suppose that is alright.  Like Max, I am on my own timetable. When it comes to mothering a child with a medical condition there are no rules or milestones that need to be hit.  Helping your child and living life to the fullest is the goal.  I think we are doing that, which for the most part keeps the worries at bay.  

As I write this it occurs to me, that just like there is no cure for Glut 1 DS, only treatment, there is no cure for a mother's worry, only blogging. 

Thanks for reading.

Saturday, October 15, 2011

Business Ventures to Butter Dishes - an East Coast Trip

I have been drawn to creative endeavors since childhood, but they were never more than hobbies.  In the last year I finally decided to seize the day by taking a hobby and making it into something a bit more...a tiny business.  It started as a way to keep my sanity as we were dealing with all the unknowns about Max's health.  I would shut the worries away by making things.  My main focus at the time revolved around button presses, the kind used to make campaign buttons.  It was something I would do with Caroline, a way to help her feel included in a time that was so focused on Max.  She would help me make pins to put in her hair bows or magnets for a memo board in her room.  We made gifts for Max's therapists and her preschool teachers.  We also made magnetic inserts for a necklace pendant that Ray helped me design.  It was good for us, it was healing.  

I had no intention of it becoming a business, but slowly it did.  My mom's friends started to buy my creations last year and in a brief fit of confidence I got two stores in the area to carry some of the things I was making.  At the beginning of 2011 it became an official business, Bob Owl Boutique.  I have let to grow very slowly, more by necessity than anything else.  I don't have a lot of free time to devote to it, but as it did last year, it keeps me sane.  

My father's wife, Deirdre, called a few months ago and told me that the woman in charge of a local arts and crafts show had seen my work and was interested in me coming and being a part of their show.  I was honored and excited.  Deirdre lives in a village called Annisquam on Cape Ann in Massachusetts.  I have been wanting to visit for a while and it was the perfect chance to do so.

My creative side kick, Caroline, had to come along.   She would not hear otherwise and since we have the flexibility with our homeschool schedule it worked out well.  I would have loved to take Max too, but it made more sense for it to be a girls trip and to leave the boys at home to play with their Nerf guns.

Caroline and I had an incredible time.  The show went really well and I was pleased with that.  

Bob Owl Boutique's New England Debut

But more important than the show was our time in that magical place.  The Cape Ann area is really unique.  It has water vistas at every turn and large boulders of granite sit in people's back yards.  The architecture feeds my East coast soul and the seafood...ah the food!  We got to meet many wonderful people and we were able to visit the centuries old church where Deidre is a pastor.  Rarely when traveling am I tempted so much by a place that I can see myself living there.  But I will admit, I was tempted!

Lighthouse in Annisquam

Deirdre and my father made sure we saw all the sites.  We went to wonderful museums, explored different towns and even went sailing on a schooner ship.  

Stylish Sailor Girl

The sails on the schooner.
We really missed Max when we saw this canon.  

We had done a lot of Caroline's school work ahead of time, but we brought a little with us and it was great learning on the go.  Long airplane rides have homeschool classroom written all over them.  I was surprised at the amount of work we did, extra work even.  New England is also one big history lesson, so the trip itself became a giant field trip!

Caroline holding a star fish at a museum

Let's revisit the topic of food.  In Colorado we have some great seafood restaurants, but nothing beats being at the source of where your food comes from.  There is a place called Woodman's in the town of Essex.  It draws quite a crowd and people have to line up outside.

The line stretched out behind us a long way.
Under those exquisite onion rings are the lobster rolls.

The wait was worth it.  I had learned about lobster rolls almost a decade ago at a friend's wedding in Maine, but I didn't try them.  After seeing the line and hearing about Woodman's reputation, I realized if there was ever a time for a lobster roll, this was it.  Oh my, it was perfection!

A butter dish a pirate boy would love!  It looks like treasure!
In the same town as Woodman's we found the perfect gift for Max!  When you consume the amount of butter that Max does, a butter dish becomes an important part of your day.  Our plain white dish just didn't seem special enough. When I spied a tarnished old butter dish in an antique shop, I knew it had potential.  Just like our boy on his magic diet, the dish was transformed with a little polishing.

Gloucester Harbor - Fisherman's Memorial

Annisquam River

The trip was so multifaceted.  It was a family visit, it was a business trip, it was bonding time with Caroline, and it was also a time to slow down and to reflect.  I looked out over large or small bodies of water and I felt so peaceful.  Which is a great thing when you are over excited about lobster rolls, arts and craft shows and butter dishes!  

Tuesday, October 4, 2011

Waiting Room turned Party Room - Pioneer Party

I have always wanted to host an outdoor birthday party for the kids.  However, both of their birthdays are in November, thus creating a weather problem.  This year it occurred to me that I could host a party for them earlier in the year when it was warmer.  Max and Caroline agreed to the idea right away!  

We have known since last year that we wanted to have a pioneer party and we had the best time planning it.  They both wanted a covered wagon.  Ray wanted a bounce house, yes, you read right, it was Ray who wanted it.  I was unsure, after all we were renting a covered wagon, let's not go overboard.  But Ray made the point that when there is a bounce house at a party everyone has fun, both the kids and the adults, since the kids have something to do the whole time.  I was still unsure since most bounce houses are bright and not really western in theme.  Well, I finally found one that fit the theme and my color sensibilities, so Ray got his bounce house.  Which he thoroughly enjoyed himself, when all the guests left.  

The other main party activity was panning for gold.  I read about this idea online and I wanted to try it.  I purchased some bags of rocks from the dollar store and spray painted them gold.  I gathered a bunch of pie tins from the thrift store, and from Ray's grocery store pie habit, and Ray pounded holes in them.  We filled two large plastic bins with sand and water and the "gold".  The kids had the BEST time with it.  It was so fun to watch them!  Some of them were so serious about the gold that they were not waiting to sift it.  They were stuffing sandy hand fulls of gold into their bags.  Max LOVED panning for gold.  I think it was his favorite part of the party.  He enjoyed the bounce house, but more before and after the party than during the event.

Caroline adored every minute of the party, you can tell by this picture. She had the time of her life!

We had a table where the kids could get bandannas and sheriff stars.  There were also straw cowboy hats for all the kids.  I had a lot of fun and thankfully a lot of help cooking all the food for the party.  We had brisket, coleslaw, corn casserole and baked beans for the adults.  For the kids I had pigs in a blanket (I didn't make those) and chips.  The bounce house people brought some tables and chairs, but I also used our old living room curtains for picnic blankets.   

The covered wagon turned out to be....well, not covered.  I was very disappointed when I realized they had not brought the cover with them.  However, the kids never noticed and I think in many ways it worked out for the best.  They loved being able to look around!  The covered wagon did a circuit around our back pasture.  The driver of the wagon was wonderful.  He told the kids all about the horses and filled them up with interesting wagon information.  Some of the kids road countless times and were experts by the end of the party.

I talked to Caroline and Max before the party about the idea of not getting presents.  I explained that many children forgo gifts and instead collect money for a good cause.  They selected Miracles for Mito as their charity.  Miracles for Mito was founded by the parents of Max and Caroline's dear friend Samantha, who passed away a little over a year ago from Mitochondrial disease.  Miracles for Mito supports families all over Colorado dealing with Mitochondrial disease.  The morning of the party Caroline was out with Ray and she selected a lady bug balloon to be tied to the basket of information.  I was so touched by this.  We bought Samantha a lady bug toy the day before she passed away.   

I will admit Max really was too young to fully understand what we were doing.  He got very upset when I tried to put the decorated can away after the party.  He said "No Mommy, I NEED that!  I have to take the money to Samantha in heaven when I am really old and I die."   Utah Caroline reported him saying something similar to her as they looked at all the cards that were given.  Sweet boy!  I tried to help him understand more about the foundation and that we were collecting money to help Samantha's friends who have the same disease.

I am so happy to report that we raised over $500 for Miracles for Mito!  It truly made the party so special!  Thank you to everyone who donated!!

Speaking of Utah Caroline, she flew to Colorado just to come to the party!  And the kids thought they would not get any presents...Utah Caroline is the best gift around!  The mutual adoration that those three have for each other is one of the many reasons I love her.  

I can't plan a party with out a last minute craft moment.  The favors pictured below were this year's moment.  I was visiting my friend Shelby in North Caroline just a week before the party and we got it in our heads that we HAD to make these.  36 of these to be exact.  Each one having 12 parts to them!  We had a blast making them, even if we did stay up too late.  They turned our so well!

To say we had a fun time would be an understatement.  It was a true gift to be surrounded by friends and family celebrating my children's lives and our new direction as a family.  Yee-Haw!