In Loving Memory

Matthew McQueen Salley, Jr.

February 8, 2004 - March 22, 2005.

Those who sow in tears
will reap with songs of joy.
He who goes out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with him.

~PSALM 126

Happy Birthday Matthew

Three years ago, today, we met our little boy for the first time. We have experienced him every day since then - both when he was physically here with us and and now as we hold his memory close to our hearts...memories stirred by experiences, songs, places - and sometimes a simple brief glance at his little sister.

In remembering Matthew today - I've included his eulogy as it seems to best capture his essence. I realize as I read it often that although his life here may have been short that it was in no way incomplete. It is well described in a quote I came across a couple of days ago by Viktor Frankl (The Doctor and the Soul) that read, "We cannot, after all, judge a biography by its length, by the number of pages in it; we must judge by the richness of the contents...Sometimes the 'unfinisheds' are among the most beautiful symphonies." Today we celebrate the rich and full life of our son. . . Happy Birthday Matthew.

How in 14 months is it possible to transform so many lives in such a profound and permanent way? If “The greatest of these is Love…”, then only thru love could that kind of transformation take place. Love given. Love received. Love in the precious form of Matthew McQueen Salley, Jr.

Matthew gave us the opportunity to experience love in a way we never have before - - the privilege to practice the act of love over and over again.

He was closer to God’s idea of love in his one year, than we are after decades of practice. So he let us practice on him: giving it away and giving it away only to find more and more in our reserves.

He showed us how to love. He showed us what love looks like and feels like and smells like and he kept coming back, giving us more opportunities to love him and to nurture that place within us that is the wellspring of all the good we will ever do in the time that God gives us.

God gave us extraordinary, daily opportunities to practice love in the simple and often mundane things required to care for Matthew, each one an act of love that drew us closer together, and closer to God. Changing a diaper, never forgetting to move in for the kiss… Abandoning all hope of keeping anything clean, and enjoying the mayhem of lunch, or the sport of kings: Tupperware hockey… Engaging in those moments in which you find yourself preserving images of him, smiling or walking or just drifting off to sleep - - images that God commits to your memory forever as a gift that eclipses any former notion of true value.

And then the power of that love - -the spirit of love within you, draws you closer to everyone around you and to the life God intended for you. Matthew did that for all of us who loved him. And for those lucky enough to be close to him, you enjoyed those moments of transformation - - the moments that have changed you forever. Like when you found yourself going back in, not because he was up – but just because you wanted to see him one more time before you went to bed. Or all the times you took the gift of his smell, the one you could find best in that soft, warm place between his cheek and neck, every time you had the chance. And in the mornings when, straight-faced, you savored the moment right before you tamed his mane, the wet brush making him look like you wish he would sometimes act. And those eyelashes. Why would God bless you so richly with this little boy who could slay armies with a single bat of his eyes? Which brings you back to beginning. Because of Love.

Matthew also taught us about joy. He taught us about joy in the way in which he did just about everything. Every time he took a bite of something new - - no really, every time…He would say, “Mmmm” almost before each little morsel would hit his palate. Out would come that exclamation: “Mmmm” That’s what Matthew thought about life. That’s what Matthew thought about whatever passed his way. “Mmmm.” No ho hum days for Matthew. His days were met open-armed and at full speed, leading him to his next discovery or to his next belly laugh where he would hold his little tummy and double over, in peals of laughter.

Matthew was love, and joy and discovery. He was, already, everything we all aspire to be. He will remain that forever for all of us. And when we meet again, we will receive the great gift of knowing him more fully. For him that will be in the wink of an eye. For us, we will have to continue to trudge through life, to get to the place of love and joy and discovery and goodness Matthew already knew here, and knows now in the abundant love and Holy presence of God.

Matthew was indeed a gift from God.

Happy Holidays!

As I write this, I realize it's been about 2 months since I last updated the blog...oops! Things at the Salley home have been very fun these last several weeks – Ella is becoming very interactive and is a very happy baby! She is “talking” a lot (in her own language, of course), smiling / laughing a lot, and sleeping...A LOT! In fact, I would estimate she sleeps about 18 or 19 hours out of the 24 in a day! We put her down for bed at about 5:30 or 6:00 each night and she is waking up at about 7:00 the next morning. I am sure it’s assisted with feeding her a couple of times during the night (about 9:30 PM and 2:00 AM), but even then she gets a little upset with us when we wake for that...she just wants to sleep! When she is awake though, she is wide-eyed and playful. She enjoys the “ExerSaucer” and tries to grab a hold of and bite the toys... she is now teething and drooling everywhere (and gnawing on her hands). The doctors (at both Emory and regular pediatrician) have given her good marks at her check-ups - blood work is good and she's 50th percentile for weight / 60th percentile for height - right where they want her.

We also now have a thumb-sucker! Ella found her thumb at around 3 months – which has actually been very nice as she was done with her pacifier and now we have one “built-in.” We put her down for naps and bedtime and within about a minute or two she has her right thumb to her mouth with the “hook” of her index finger over her nose. I must say it is very adorable to observe.

Another notable event that took place back in September is that a friend and coworker of mine – Jimmy Penson – participated in a sprint triathlon in Hilton Head and used it to raise awareness for MCAD and other metabolic disorders (as well as some money) and to do so in honor of Matthew. With merely the small group in our office along with the support of his family – Jimmy was able to raise roughly $6,000 to donate to Emory University Metabolic Genetics Program, which works to screen newborns as well as treat and support those diagnosed with genetic disorders. Thanks to Jimmy and everyone who supported him in that endeavor! In the wake of that event, Jimmy and I talked about how we could continue the efforts, and we are planning an event (that will require [physical] participation of all of YOU!) for next fall that will be a lot of fun. Planning has already begun... more to come in the near future.

Finally, with the holiday season already upon us (time seems to accelerate this time of year), they seem to be a little easier for us this year. Last year, we “boycotted” them since we were feeling neither thankful nor very celebratory. In fact, Robin and I spent Thanksgiving together at home and then eluded as much of the commercialized Christmas as we could by escaping to Cabo San Lucas, Mexico (it certainly was very unusual walking on the beach Christmas morning in 85 degree weather with ocean waves lapping our feet). This year, the three ...and I would make the case, four... of us went to Augusta to spend Thanksgiving with Robin’s parents and sister and had a very nice time. For Christmas, we plan to be home in Alpharetta and spend the day with my parents, Lauren, and grandparents.

We wish each of you and yours a wonderful Thanksgiving and blessed Christmas! I intend to be happier this year and aspire to reflect on the real significance of this season. We are also thankful this year – for what we DO have – friends, family, and most importantly, hope. When you truly consider it, what else is there?

The Shadow Proves the Sunshine...

I (Matt) was thinking about this song today...why it keeps playing in my head lately. It's a song by a band, Switchfoot, which is one of many songs on an iPod playlist I created a while back titled, “For Matthew...” There are probably 40-50 songs on it - all of which make me think of my little boy for one reason or another. Since Ella's arrival, this particular one keeps playing in my head and has resonated with me even more.

For me, it's a song that brings up an array of emotions – and while I'm still trying to understand the lyrics, to me it seems to be a contrast of light and darkness and how we exist in both; dealing with what this world offers us and how we know it is not the way God intended it to be. In a way it is heartbreaking, but in another it makes me realize that when I am focusing on the shadows of my life that all it takes is to turn 180 degrees to see there is a bright sun shining on me. It speaks to me about my Matthew...and now, too, my Ella.

Sunshine won't you be my mother
Sunshine come and help me sing
My heart is darker than these oceans
My heart is frozen underneath

We are crooked souls trying to stay up straight
Dry eyes in the pouring rain
The shadow proves the sunshine
The shadow proves the sunshine

Two scared little runaways
Hold fast till the break of daylight where
The shadow proves the sunshine
The shadow proves the sunshine

Oh, Lord why did you forsake me
Oh, Lord don't be far away, away
Storm clouds gathering beside me
Please Lord don't look the other way

I'm a crooked soul trying to stay up straight
Dry eyes in the pouring rain where
The shadow proves the sunshine
The shadow proves the sunshine

Yeah shine on me
...
...

If you're scared don't run away
Hold fast to the break of daylight now
The shadow proves the sunshine
The shadow proves the sunshine
...

Shine on me
Let my shadows prove the sunshine

8 weeks...

Well, the little one will be 8 weeks old tomorrow and grows bigger everyday - we put her in her moses basket to take a nap yesterday and was amazed at how she is close to not fitting anymore!

We have almost gotten her schedule down but she often gets this wild-eyed, crazed look at about 6 PM and wants to stay awake until 10 PM or so - she is getting better, though. Her nighttime feeding/sleep schedule is good - 10:30 PM, 2:30 AM, and 6:30 AM. Robin takes the first two and I the last to allow Robin a little rest in the mornings. Ella sleeps through the 2:30 AM feeding so it isn't terrible (easy for me to say!) and is awake and very happy at 6:30 or so. It makes it fun to take that feeding becuase she has really started smiling a lot and just stares and smiles at me - I am convinced she has laughed a couple of times, too!

Some recent photos:

4 Weeks!

Little Miss "Ella Bella Cinderella" is doing great. Robin and I continue to marvel at her and watch her grow - she went to her 4-week check-up yesterday and she weighed 9 lbs, 4 oz! She is showing off her big blue eyes more and more (when she's not sleeping) and we are so enthralled with her!

Ella has had an opportunity to meet lots of new family members in the last few weeks - grandparents Rob & Trish; her great Maw Maw Salley on her 84th birthday; her great Maw Maw & Paw Paw Scott; her uncle Chris and cousins Reid and Emma; and her uncle Tim, aunt Karen and cousins Emerson, Phoebe, and Bateman who stopped in on their way back to Austin, TX this past Monday. All of these plus granparents Ed & Donna, and aunts Lauren, Sharon, and Kelly whom she met in the first few hours/days of her life.

We are still trying to figure out Ella's sleep pattern (or lack of one) - unfortunately for sleep's sake she seems to have her days and nights confused. Every couple of nights she will do "great" where WE are waking HER (to feed). While we (especially Robin) are tired, we continue to keep in mind and recall that after losing Matthew we told each other we would give anything to have those sleepless nights back - and it puts it right back into perspective.

A couple of Saturdays ago we had an incredible photographer come to the house and take pictures of our family - mostly of Ella (pics courtesy of AGR above and below). Robin came in contact with her through her friend Dayna who lost their precious daughter Hayley to AML Leukemia on December 19, 2004; and who had a son, Jacob, on May 29 of this year. She and Robin have been such an encouragement to one another over the past year and a half.

In closing, we want to thank all those who graciously brought dinners to us over this past month - the meals were delicious and very convenient! Thanks again!

Doing Well!

After a week full of meeting with doctors, nutritionists, genetecists, etc., so far Ella is doing great. More and more we are seeing bits of her big brother in her - sans the sideburns & big feet, of course! [picture of Matthew at 5 days old] She is sleeping well, though we are having to wake her every 3-4 hours at night to feed her...otherwise she might sleep longer. That is and will be the protocol for the next 6 months - and after that we may be able to begin to extend that time some (and allow dad and [mainly] mom a little more sleep!).

The feeding is going very well - we give her about 3/4 ounce of a mixture of formula / Polycose (carbohydrate supplement) / ProViMin (increased protein supplement) and then she goes to Robin for the remainder of her feeding. She is also taking L-Carnitine (liquid oral supplement) every 8 hours. As breast milk alone is about 45% fat, the thought of the nutritionist at Emory is that by taking the formula mixture - it reduces the amount of fat to about 30-35% of her total caloric intake (which is really what all of us should be doing!). As MCAD patients cannot properly break down their own body fats, this will help ensure that she doesn't get too much and to that point. Regarding the L-Carnitine, although it is naturally made within the body, supplementation helps the body's metabolism run smoothly and is useful in preventing low blood sugar. It also assists in removing metabolic wastes from the cells so a buildup of toxins will not occur.

For times when she is sick (cold, fever, virus, etc.) and/or not eating, we were prescribed a glucose monitor to test her blood sugar - I opened the box to see how to use and am a little angst-ridden about having to stick her with that little needle "gun." I am certain, though, she is probably less frightened than me as she was stuck about 12-15 times the first 24 hours of her life and has had a multitude of labs done on her since then. If blood sugar is in fact low, we are to give her a liquid polycose solution OR a finger-full of cake icing (yes - cake icing) in her cheek to quickly boost her blood sugar and call the doctor immediately. From there, we will be given further directions and likely take her to the ER for an IV of glucose D10 (D5 is most common). All that said, the whole point is to avoid her body trying to break down stored fats for energy - as that is when she could enter into a crisis.

Thanks to everyone for their thoughts - hopefully the above gives you some more insight into Ella and the disorder. I am sure it will become 2nd nature in no time! Take care.