Hopes rise blooming

Julia ♦ February 12, 2025 ♦ 4 Comments

The five of us at our San Antonio home, 1998.
Matt is at bottom right.

Our sweetest hopes rise blooming
And then again are gone,
They bloom and fade alternate,
And so it goes rolling on.

I know it, and it troubles
My life, my love, my rest,
My heart is wise and witty,
And it bleeds within my breast.
— Heinrich Heine

Recently, several of you asked me to update you on Matt. I asked him whether he had anything to say to you, or something he would like me to write about, but he was noncommittal. Unlike Jeff used to do, however, Matt did not specifically ask me not to write about himself.

I haven’t written a great deal in this blog about his teenage years, but going through some recently scanned photos, I found several that I want to share with you. Looking at the photos below, all of which were made before his first manic episode changed our lives, I realize that everyone, each one of us, leaves behind so much of our youth when we enter adulthood. The dreams and goals change, tempered by hard realities, and enthusiastic hope gradually matures into acceptance of life’s limitations.

Matt is no different from anyone else in this regard. His teen years were full of activity, effort, achievement and fun, despite the painful surgeries he endured, and the frustrating disabilities that made goals more difficult to reach. It is a bittersweet experience to look back at the happy photos of those years, whether I am recalling Matt’s youth or Drew’s. Yet, where Matt is concerned, I now wonder how I found the energy to spend hours with him every single day on homework, piano practice, OT, PT and speech therapy exercises, church youth projects, and most of all, daily working to help him overcome his motor skills deficits to become independent with basic living skills that others had mastered with little to no effort during early childhood.

Here’s a side of Matt that many of you have not seen before. I hope you will like these photos.

Drew and Matt with a very young Pasha, 1997

Drew is 16 months older than Matt, but Matt hit puberty first, and for a time he was taller than Drew. That’s hard to imagine now that Drew is over six feet tall, and Matt is only 5’5″– but this photo was made during those years.

Matt and I played a duet at a spring recital in 1998.

When Matt was in middle school, his teacher immediately noticed his ear for music, and put us in touch with a gifted woman who taught students with disabilities to play piano and other instruments. Though previous school staff and therapists had told us Matt would never learn to move his fingers separately, this amazing music teacher proved them all wrong, and soon Matt was playing fairly well.

He loved being able to make music, and his teacher had high expectations, scheduling performances three to four times every year for all her students, and insisting that they compete in juried guild auditions alongside their non-disabled peers. At these auditions, Matt had to play scales, chords and arpeggios, along with several memorized pieces, and he always passed with high marks. I don’t even want to think about how many hours it took, though.

For the most part, Matt never complained about the hours every day we had to practice for him to get the fingering and timing right. Best of all, this endless exercise for his fingers opened the door for him to be able to use computer keyboards– another thing school IEP teams had formerly told us he could never do. He ended up being able to keyboard all his school assignments at the rate of about 17 words per minute, which was useful since his handwriting has always been illegible.

Here’s a close-up of Matt with his braces.

Matt and Drew each wore braces for nearly three years. Sometimes I got really sick of driving back and forth to the orthodontist weekly in heavy afternoon traffic. Since I was working full time for much of that time, life was pretty stressful. I certainly don’t miss that aspect of having teenagers!

Matt with his all-time favorite girlfriend, Katherine, in 1998.

Our years in San Antonio were filled with social activities for Matt. During that time I once remarked that our entire calendar was built around his many scheduled and unscheduled outings with friends. Luckily, I really enjoyed being with all the other Moms, since we ended up playing chaperones. I had the blessing of friendships with some of the strongest and liveliest women I had ever known, and Matt loved his friends’ mothers almost as much as he loved me. It was wonderful, a golden time that I missed so much when we moved to California in 1999.

Matt was chosen “Most Inspirational” at his middle school graduation in California, 2000.

Despite having to leave his friends and spend his final year of middle school at a new campus in northern California, Matt continued to bloom, staying very active in a music conservatory with another gifted piano teacher, singing in the school chorus (even singing a solo at one performance) and making friends everywhere he went. Jeff and I both noticed that after only a few weeks in California, we could hardly go to any store or fast food place in our little town without someone excitedly calling “Hi Matthew!” I will always be grateful for what an easy transition he had from a fantastic situation in Texas to a very different but equally rewarding time in California. Things were far from ideal in either location, but both times were filled with blessings for him despite the hard work and continual challenges.

Matt has long been a favorite topic of mine, so I could go on and on, but perhaps this is more than enough. I hope you have enjoyed getting to know him just a little bit better. Whenever my heart is bleeding inside, I have to remind myself that even the happiest times were far from easy, and though we bloom in different ways as we grow older, yet still we bloom. I really believe that.

This post was first published seven years ago. During that time, Matthew has endured three more heart surgeries, a broken arm and subsequent diagnosis of cardiac-related cirrhosis, a near-death bout with endocarditis during which he coded for the first time in his life, and an ever-increasing round of “routine” medical appointments to monitor his increasingly complex health situation. Despite his worsening prognosis and quadrupled cardiac medications, he remains essentially the same sunny, indomitable self, with occasional bouts of sadness the only clue that he does understand more than he tends to express. His presence in my life becomes more and more precious to me, and the two of us enjoy our time together more than ever, thankful for the blessings that remain.

The original post, comments and photo are linked, along with two other related posts, below. These links to related posts, and their thumbnail photos, do not appear in the blog feed; they are only visible when viewing the individual posts by clicking on each one. I have no idea why, nor do I know how they choose the related posts. That’s just the way WordPress does things.