Inspiring Story

One of Lily's therapies involves Orientation and Mobility from the School for the Deaf and Blind.  No, Lily's not deaf, and she's not blind, but (I believe) a small optic nerve qualifies her for those services.  Lily's therapist, Ms. Alicia, is amazing.  She's one of the most bubbly, life-loving people you'll ever meet.

Interacting with Alicia, you'd never know that the past two years have been quite difficult for her and her family.  Her husband, Dave, was diagnosed with a rare lung cancer about two years ago, and it's been fight after fight after fight for him.  But he's not given up. 

I know life is not easy for Alicia, but she is such an inspiration.  She has an incredible attitude, and her hope, along with her faith, is remarkable, especially given the situations she and her family have been in, including (but certainly not limited to) life support/ECMO.

I don't know Dave, but to hear his story and to see how determined and strong he is is also inspiring.  I've honestly never seen anyone go through as much as he has and still have such a positive attitude and put up such a fight.

Today, their story came out in the newspaper.  If you'd like to read about this incredible family, here's the link:  http://www.postandcourier.com/news/2011/nov/28/a-brave-face/   And if you'd like to read more of their story, you can find it at http://www.caringbridge.org/visit/davidpugh76.  It's a phenomenal story.  It gives hope and exemplifies triumph.

How fortunate I am to know Alicia.  She inspires me with her positive attitude, her hope, and her faith.  I could always use more of that.

So Much To Be Thankful For

 I read a quote the other day that I really liked:  Gratitude turns what we have into enough.  


Although there are times when I wish I could have this or that, most of the time, I'm happy with what I have.  It is enough.  So many of my experiences have taught me that.

• After I had finally graduated from college and moved from a one-bedroom house with two children under the age of two where I had to sit on the bathroom floor while I studied, it made me realize that I can do hard things, I can accomplish much, and there's nothing wrong with sacrificing "things."

• When I went to South Africa and worked in a village where houses were made of dung, it made me appreciate the things that I had and the house that I lived in, even though it wasn't the house I truly wanted.  

• When I look at how far Lily has come, how happy she is, how fortunate I am to be able to stay home with her and Soleil (and even Gabriel, when he wasn't in school), it's worth not being able to get the things that I want. 

I am truly thankful for all of those experiences.  They have helped open my eyes to what is truly enough in my life--my family, my friends, the love I feel that surrounds me that comes from them, my God who is with me through it all--despite how difficult it has been. I've come to realize that it's never been the presence of "things" that have made my life worthwhile.  It's actually been the absence of them, and having to make the best out of life with what I do have. 


And while Dave and I are certainly thankful for the "things" that we do have, there are so many more important reasons to be thankful:

• We have five great children!
• We have great parents!
• We have great friends!
• We attend a great church!
• We have a great community of Trisomy 18 families and have had the ability to meet some of them.
• We have a roof over our heads.
• Dave has a job, and with that job, we are able to afford what we need and even a few things we want.
• We have been blessed by gifts from secret friends.  There have been many times when these gifts were sent at the perfect time when money was quite tight.  (We have a friend in California who continues to send us a gift pretty regularly.  Thank you, my friend!)
• We have had over two and a half years with our little Lily who continues to amaze us with her accomplishments and her determination.  She is able to get herself into a partial crawling position and starting to taste food again.
• We have had great doctors and nurses who have helped us care for Lily.
• We live in a country where freedom is guaranteed and children with disabilities are supported.

 My list could go on and on.  If you read between the lines of this list, you would see that it's not been all that easy.  But we know it could be worse, and knowing that has filled our hearts with an immense gratitude for what we do have.  And that is enough.

Lily's New Diet

The one thing that has always bugged me about Lily's g-tube is that it's just so. . .unnatural.  Sure, the button itself is obviously unnatural, but the formula that she gets is what bothers me the most.  I know it's developed to meet Lily's nutrition needs, but when funky ingredients that sound alien litter the ingredient list, I cringe.  Plus, it kills me that Lily has no idea what she's missing when it comes to eating the good stuff like peaches and strawberries and cantaloupe.


For the past year, I've been wanting to try a more natural diet with Lily.  Her nutritionist gave me information on what is called a blenderized diet.  I did some research, and then put it all aside because I wanted to read the book Homemade Blended Formula Handbook before venturing out onto this road less traveled.  But I kept putting off buying the book because it seemed rather expensive, and I didn't know if it had the information I was looking for.  

I had read a post from the mom of Lilly, a little T-18 friend of Lily's, and how she was starting Lilly on a homemade blended formula diet.  We exchanged a few emails, and I must say. . .I was inspired to get moving!  So instead of purchasing the book, I decided to get it via interlibrary loan at our local library.


One of the supplies I kept hearing we'd need for this type of diet is the Vitamix blender.  My mom works at a restaurant supply company, and she was able to get us one for free!  It's quite an expensive blender, so that helped a lot; however, I hear that the company that makes the Vitamix offers a discount to families with children who have special feeding needs.  This blender will come in very handy once we get to the point where we're blending Lily's food.


But, finally, I've taken that step and started the process.  We're taking it very slowly:  week one consisted of one tablespoon of Stage 1 baby food applesauce mixed with her morning feeding.  We're in week two, and Lily is now getting two tablespoons throughout the day--one in her morning feeding and one in her 4:30 feeding.  She's tolerating it very well.  Next week, we'll move on to squash probably.


I've read wonderful things about this diet, and I hope that I can be yet another one to add positive comments about it.  Since Lily nursed for about 13 months, she's not been solely formula fed.  Still, I do worry a little whether or not this new diet will shock her system.  But I'm recording a lot of information--feeds, calories, weight, how she's tolerating, how much she's going to the bathroom, etc.--and watching her closely.


Since she's been on this new diet, Lily has not vomited, and she's not been on any of her medication, including the erythromycin (spell check!!!) for motility.  I can't necessarily credit the diet, though.  When Lily was sick a few weeks ago, the doctor put her on a steroid and an antibiotic.  I'm wondering if the steroid reduced some swelling that might have contributed to the vomiting in some way.  We may go back to the Miralax--Lily did have a bowel movement FOUR times today, but they weren't the consistency I like to see--but we're first going to try to increase her liquids before going back to that.  I may even try a little prune juice and see how that works.


As for physical improvements, Lily was down to 18 pounds, 8 ounces (with clothes) when she was sick.  That was on 10/28.  Last night we weighed her (without clothes), and she was up to 20.5 pounds.  Keeping that food down really helps!  Her hair seems to be growing, and she's now trying to get into a crawling position.  She's just having trouble straightening out her arms.  She's getting her behind off the floor, though.  Maybe all of that is coincidental.  Only time will tell.


I'm excited about this diet, though.  I can't wait to introduce peaches and strawberries and cantaloupe to Lily one day.  Like I said, we're taking this very slowly, but one day, she'll get a chance to have in her belly things I have no trouble pronouncing.  It sounds healthier that way.

Two Visits

I'm ashamed that this is such a late post. . .


Since Dave's school is now on a year-round schedule, the end of September brought our first long break.  Two weeks!  We decided to take a trip up to Canada to see some of Dave's family.  We stopped in DC on the way up to take an overnight break from the long drive and, as we do any time we travel, we thought about contacting a few friends we've made on this Trisomy 18 journey.  


I've created a map (not been great on following through with it) that shows where children with Trisomy 18 live.  I made it for this reason:  so we could have a visual of where these children and their families live.  In the event we were traveling, we could contact these parents and see about meeting up.


Looking at the map, I was thrilled to see that my friend Sara, Alice's mom, lived close enough to the interstate we would be taking to get to Canada from DC.  I called and arranged to meet her.  Even though I wanted to do this more than anything, this was hard to do.  Alice passed away in May, and I didn't know how Sara would feel about seeing us.  The whole way there, I kept thinking how much I wished we had taken this trip a year prior.  It broke my heart knowing that we were too late.  I miss Alice and wish more than anything that she and Lily could have met each other.  Visiting Sara was such an honor, and as it always is when we meet Trisomy 18 parents, so good for my heart.


On the way home from Canada, we stopped in DC again for a break, and this time, we were able to meet Jenny and her daughter, Julia.  Julia had just turned 10 months, and to see her sweet, little self took me back to when Lily was such a tiny thing.  And Julia is such a fighter!  Jenny, Dave, and I shared our journeys while Gabriel and Jenny's son, Isaac, played, and again, it was such an honor.  Such a lovely family!  It was another visit so good for my heart.

Two journeys.  Too different, yet the same.  How thankful am I that we were able to stop and take the time to visit on this Trisomy 18 journey.  I just wish we had been able to do it a little sooner.   

Marriage Refreshed

The other night, Dave and I went to see Josh Groban in concert.  It was a birthday/anniversary gift that he got me back in April.  Quite extravagant, if you ask me, but it was so worth it!


I know I'm biased here, but I think Dave and I are a pretty cool couple.  We're good for each other.  We fit.  It's something I used to think about and have so much pride in a good bit, but lately, that's fallen behind Lily and her needs, and Gabriel and his needs, and Soleil and her needs. . .and Rani and Autumn's needs, too (even though they are quite self-sufficient these days).  And I hadn't given the "coolness" of our relationship that much thought.  It's not that our marriage was struggling.  Maybe we were just falling into the rut of routine.


I remember as if it were yesterday, when Dave and I were dating.  I was a big Josh Groban fan, and he had a song that he sang in Spanish.  Dave knew Spanish a whole lot better than I, and so I asked him if he could translate this song.  I can still hear Dave's voice as he translated. . .


There's a special meaning to Josh Groban now, because of that night, and it's all about Dave.


So we're at the concert, and Josh begins singing.  And it was all I could do to keep myself from crying like a baby.  Then the second song, same thing.  And the third song!  Nevermind that his voice is like honey.  Nevermind that his songs are sadly yet sweetly romantic.   It was all about realizing just how much I had been focusing on everything else and how little I had been focusing on us--Dave and me. 


It's easy to do when you have kids and a busy lifestyle.  It's even easier to do when you have a child with a disability.  I read somewhere that up to 80% of marriages where a special needs child is involved end in divorce.


I can see how.  There's that much more to deal with:  more worry, more stress, more lack of sleep, more frustration.  Just more, more, more.  And you begin taking things for granted just so you can merely survive.  That's what I did anyway.


I'm so thankful that Dave got us the tickets to that concert.  I can't say it saved a marriage--we weren't there, thank goodness--but it certainly reopened my eyes to the beauty of our marriage--that. . .coolness--and I feel refreshed and ready to take on eternity with my husband.