Wednesday, December 21, 2011

Christmas Letter 2011


Dear family and friends,

God has been just as good as ever. His mercies are new every morning. He is a faithful and loving Father. But our Great Physician has prescribed some rather bitter-tasting medicine for our family this year. No doubt it has, is, and will be to our benefit and His, but that does not lessen the difficulty of swallowing. Some of you know of our recent struggles. Some of you do not. So, here is our annual family Christmas letter, recapping the last year with highlights of the ups and the downs.

We started 2011 off with a lovely trip to Florida to accompany Chris to a conference for aeronautical/aerospace engineers. Upon returning home, we promptly came down with every nasty bug making its way around Ohio. We were pummeled by waves of illness, on the verge of recovery only to drop like flies once more with something new. The storm eventually subsided in late March.

In February, I took Hosea to our family physician to address some concerns I was having. It had been wonderful to have such a content, easy-going newborn. I even felt blessed to have a “slow” infant with whom I could cuddle more and trust to stay in one place. But by the time he was 7 months old and not even rolling over, I was concerned that something was wrong. The doctor agreed and gave us a referral to see a developmental pediatrician, though she didn’t give me the impression at the time that anything more than a few months of physical therapy was likely to be called for in order to get him “caught up.” The pediatrician, however, saw a different story, and thus the true roller coaster began.

The first suspected diagnosis was Mowat-Wilson Syndrome, a rare, fluke, genetic disorder characterized by moderate to severe mental retardation, limited to non-existent verbal communication, and seizures, just to hit a few highlights. We waited 6 weeks for the test to come back, during which time I had an early miscarriage, just to be told the results were inconclusive. This was followed, a week later, by a geneticist sharing his opinion that Hosea did not have Mowat-Wilson, though his reasoning wasn’t clearly explained to us. We were happy to hear it all the same, and it raised our optimism for a time.

Following up with the pediatrician in early June, it was clear she still felt strongly about her suspicion of Mowat-Wilson. She felt it was too coincidental that we found an abnormality on the very gene sequence (out of thousands upon thousands) that we had targeted, even though it wasn’t the type of abnormality normally associated with MWS. All things being equal, I’d be more inclined to believe a geneticist over a pediatrician when interpreting genetic test results, but I didn’t have any way of countering, and her argument seemed to make sense. Maybe she was right. At any rate, no one was offering any other possibilities. I wanted to know what long-term issues she thought we might be dealing with, regardless of any potential diagnosis. She agreed to give me a guess at his next visit.

The rest of the summer sped by. Chris, Hosea and I flew to Hawaii for yet another aero conference while the girls stayed with grandparents in Tennessee. I was ready to get back to our girls by the end of it, but, oh, how I wish I could have brought the ocean, flora and perfect weather back with me! We celebrated birthdays, and Chris worked hard to finish up his dissertation, which he defended (and passed!) in August.

As school started up again, I tried to keep my spirits up and brace myself for the busy schedule ahead. Hosea had started physical therapy in May, added speech/feeding therapy in July, was scheduled to start occupational therapy in October, and we were always filling in the gaps seeing one doctor or another or having a new test of some sort. Homeschooling became on-the-go schooling, and many a book was read and many a worksheet completed in waiting rooms and doctor’s offices. Throughout this time, Hosea was making progress and even began crawling on his belly, but the gap between his skill level and his age was widening. In late September, he got glasses (and looks oh-so-very cute in them!).

At the 15-month check in October, Hosea’s pediatrician volunteered to send us to Cincinnati for a second opinion with a geneticist. She also ordered a brain MRI and genetic testing for Angelman and Chrisitianson syndromes. And, as promised, she reluctantly told me that she guessed Hosea would test positive for mental retardation once he became old enough to test (at age 5). She wouldn’t, however, speculate as to where in that spectrum he might fall.

A few weeks later, an MRI showed a normally structured brain, and while we waited (and are still waiting, I might add) for the results from the tests for Angelman and Christianson syndromes we met our new geneticist. He, too, shared his concern that Hosea was at risk for testing positive for mental retardation when the time came and that Hosea may have some dependency issues even as an adult. However, the geneticist was doubtful that either the Angelman or Christianson test would come back positive. He also reviewed our test results for Mowat-Wilson and explained to us, to our satisfaction, why the test was, in fact, negative and that we could rule it out. Hosea had more blood drawn, this time to test for Fragile X syndrome, and we waited.

Two weeks later we got a “negative” result on the Fragile X test and the decision was made to do one more blood draw for a panel which tests for 92 different syndromes similar to Fragile X. Unfortunately, I don’t yet have those results to share with you because it takes 4 months to get them back! If the entire panel comes back negative then we are likely going to have to wait for testing to advance and/or for Hosea to develop clearer signs and symptoms as he gets older.

Of course, while the search for a diagnosis and all of the tests, therapies and other appointments have indeed been the picture of much of our year, they do not make a complete picture. The girls are each a year older (now 7, 5 and 3) and a grade higher (Eliana is in 2nd grade, Evangeline is in Kindergarten, and Anastasia enjoys coloring with us at the table). Other events of interest include the addition of “Ph.D” to the end of Chris’s name (Congratulations, love!), Chris beginning a new assignment as an assistant professor at the school from which he just graduated (though the ceremony is not until March), and our family joining a new church. It’s been a year of blood, sweat, tears, and lots of prayer.

When we gave our son the name “Hosea,” we did so because we wanted his name to be a constant reminder to him of God’s faithfulness to His people (among whom we count Hosea) and of the need for him to be faithful to God and to his family, no matter the cost. (If you don’t know why “Hosea” sends this message then we strongly encourage you to read the story of his namesake, found in the Bible in the book of Hosea.) While this message is just as important as ever to our son, we have found it dearly comforting to realize that God placed that name on our hearts to send that very same message to us in the midst of this trial. We pray that you all may also be blessed by this reminder as we celebrate the birth of the Messiah, our faithful God’s perfect, holy gift to wayward sinners. He promised, and He delivered!


His love endures forever,

Jennifer, for the Martins


P.S. Hosea does currently have the general diagnoses of “global developmental delay” (meaning he is developmentally delayed in all categories) and “hypotonia” (meaning he has low muscle tone).

P.P.S. I know many of you have probably never even heard of the syndromes I’ve mentioned in this letter. I hadn’t heard of them either before this year. However, I thought it best not to fill up the Christmas letter with explanations of potential syndromes and their respective symptoms. I’ll leave it to those of you interested in knowing more to look it up on your own or to simply ask us. We’d love to hear from you! :)

Monday, November 28, 2011

Welcome to Holland


c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, March 17, 2011

As Long As You Are Glorified



Lyrics

Shall I take from Your hand Your blessings
Yet not welcome any pain
Shall I thank You for days of sunshine
Yet grumble in days of rain
Shall I love You in times of plenty
Then leave You in days of drought
Shall I trust when I reap a harvest
But when winter winds blow, then doubt

Oh let Your will be done in me
In Your love I will abide
Oh I long for nothing else as long
As You are glorified

Are You good only when I prosper
And true only when I’m filled
Are You King only when I’m carefree
And God only when I’m well
You are good when I’m poor and needy
You are true when I’m parched and dry
You still reign in the deepest valley
You’re still God in the darkest night


© 2008 Sovereign Grace Praise (BMI)

Saturday, February 12, 2011

If You Give a Mom a Muffin


If you give a mom a muffin,
She'll want a cup of coffee to go with it.
She'll pour herself some.
Her three-year-old will spill the coffee.
She'll wipe it up.
Wiping the floor, she'll find dirty socks.
She'll remember she has to do laundry.
When she puts the laundry in the washer,
She'll trip over boots and bump into the freezer.
Bumping into the freezer will remind her
she has to plan for supper.
She will get out a pound of hamburger.
She'll look for her cookbook
("101 Things To Do With a Pound of Hamburger").
The cookbook is setting under a pile of mail.
She will see the phone bill, which is due tomorrow.
She will look for her checkbook.
The check book is in her purse
that is being dumped out by her two-year-old.
She'll smell something funny.
She'll change the two-year-old's diaper.
While she is changing the diaper, the phone will ring.
Her five-year-old will answer and hang up.
She'll remember she wants to phone a friend for coffee.
Thinking of coffee will remind her
that she was going to have a cup.
And chances are... If she has a cup of coffee,
Her kids will have eaten the muffin that went with it.

~Kathy Fictorie

Friday, January 21, 2011

Eliana's 1st Piano Recital

Eliana started taking piano lessons in November and had her first recital on December 20, 2010. Sorry it's taken me so long to post, but here it is! (The woman playing with her is her instructor.)


video