Monday, December 15, 2014

2014 Family Highlights

1. We moved to Niceville, Florida in August! It really is a nice, small town!

2. After 10 years of active duty service, Chris separated from the Air Force in September.

3. He is now a defense contractor for Eglin AFB using his engineering ninja tricks.

4. He is still in the Air Force as a Reservist, working as a historian.

5. We are still homeschooling with Classical Conversations and loving it!

6. Eliana (10), Evangeline (8), and Anastasia (6) have enjoyed a year of piano lessons, ballet classes, and lots of swimming in our new pool! Eliana also got to go to a week-long youth camp this summer.

7. Hosea (4) is still nonverbal but now has a communication device with which he is making excellent progress! He used it to say "I love you" for the first time in August, which he followed with a kiss!

8. Avelina (2) has the cheesiest grins and gives some of the best cuddles! She brightens each and every day.

9. Hosea and Avelina were accepted into a research study in Pennsylvania earlier this year to sequence their entire genomes. We still await the results but are excited and so grateful for this shot at an answer.

10.We live 15 minutes from the beaches of Destin! Come visit us sometime!

Merry Christmas!

Wednesday, December 25, 2013

2013 Family Highlights

1.) We spent over 5 months in Tampa, FL, due to Chris’s state-side deployment to USCENTCOM headquarters to work as a historian.

2.) Jennifer has stopped teaching childbirth classes and attending births. She's putting all of that energy into investigating diseases and finding research studies across the country that will hopefully lead to a diagnosis for Hosea and Avelina, who seem to share the same unknown syndrome.

3.) As the oldest child, Eliana (9) is a big helper. She is learning to cook and to bake, and we are all enjoying the fruits of her labors.

4.) Evangeline (7) is a passionate girl with a song in her heart. She has just started taking piano lessons.

5.) Don't let her shy, sweet exterior fool you. Anastasia (5) has a touch of crazy in her, and we have pictures to prove it.

6.) Guess who is walking? Hosea (3) really took off with his feet in October. He is walking farther and faster with each passing week!

7.) Avelina (14 months) is rolling over and finally seems to be on a good eating streak. We are incredibly relieved to have narrowly avoided a feeding tube. Her laughter is just the most adorable thing ever.

8.) We are still homeschooling (with Classical Conversations). It is challenging, especially with so many appointments to juggle, but it is also an incredible blessing for all of us.

9.) This is most likely our final Christmas in Ohio. Chris is expecting a change of station next fall. To where will we move? I don't know! I suppose it would ruin the surprise if they told us much in advance!

10.) We wish you a Merry Christmas and a Happy New Year!

Saturday, December 22, 2012

Christmas Letter 2012

December 2012
Dear family & friends,

As I look about me this fine evening, I cannot help but feel tired.  It’s not that I’ve physically exerted myself; on the contrary, I’ve been sitting most of the day.  It could be the general lack of sleep that comes with a newborn, but that’s certainly not the whole story.  The lights shining from the Christmas tree and the stockings hanging from the mantle give quite a cozy feeling to the place, but the picture doesn’t stop there.

Scattered across the floor is a strange assortment of mismatched toys relocated with love by Hosea.  The dining room table is piled with bins and what appears to be complete randomness by my well-meaning husband.  Shrieks and squeals are regularly escaping from the girls’ room down the hall, where I imagine all sorts of creativity and imaginative play are forming a scene that only the producers themselves can fully appreciate.  And here, in my arms, lies the newest member of our family, born October 10, engaged in an activity somewhere between eating and sleeping.  

For better or for worse, being a breastfeeding mother forces me to sit down and take a break frequently.  My house may suffer for it, but I love this special time with my babies.  Avelina is my fifth child, and I still marvel over the tiny fingers and toes and consider myself one of the most blessed people in the entire world whenever I kiss one of these soft, little cheeks.  Her only hobbies at this time are nursing, sleeping and fussing at me if ever I dare to lay her down, but how precious is this fragile creature to me!

Many people have asked about Hosea’s adjustment to having a little sister.  Honestly, I can’t say he seems to have noticed all that much!  When he does pay her attention it requires careful oversight by an adult, as he’s a rather heavy-handed guy.  We’re thrilled to report that he is finally showing signs of some basic receptive language, but he still has yet to understand “gentle.”  Physically, 2-year-old Hosea has made some great strides this year.  He has been learning to use a walker in therapy, and he is now able to attempt a few independent steps so long as he has his ankle braces on.  On a day-to-day basis, his primary mode of mobility is knee-walking.  All of the tests from last year were, in essence, negative, so we still don’t have a more specific diagnosis.  I suggested “Hosea Syndrome” to the geneticist, who said it may very well take the discovery and recognition of some new, rare disorder to finally be able to give a medical explanation for Hosea’s challenges.  (Methinks I should try my odds in Vegas!)  We will continue to follow-up with the specialists, but we’ve decided to take a small break from all of that until spring.
With two little ones not walking, I am extra grateful for the help of our oldest three children.  They are each eager to hold Avelina, and they play well with Hosea and often feed him for me.  Even 4-year-old Anastasia has proven herself a big helper and often likes to bring me breakfast in bed.  Her gentle temperament and sweet smiles are a blessed start to my busy days.  For now, Anastasia is learning her letters and often enjoys listening to a story or following along during Eliana’s history lesson, but I plan to start a phonics curriculum with her in January.  She is very excited about it and asks me nearly every day if she can do school, too!

Six-year-old Evangeline is in first grade this year and brings an admirable positivity to our school room.  Her cheerful attitude and responsiveness to praise make her a joy to teach.  Her wonderment and happiness in everyday things is such a beautiful, classic picture of childhood, and her creativity often impresses me.  She recently lost her first tooth and successfully stopped sucking her thumb.  We are very proud of her for giving up such a hard-to-break habit!

Eliana is eight years old now and in the third grade.  Her favorite subject is history, in which she is currently studying Rome, Greece, and the New Testament.  Earlier this year, Eliana enjoyed playing soccer in our neighborhood league. (Evangeline also played, but it clearly did not hold her interest this year.)  Our home is often blessed with Eliana’s ever improving piano skills, and our little musician especially delights in being our accompanist.  It is a joy to watch her grow into a young lady more and more every day.

As our children are getting older, so are we!  Chris and I both hit a new decade this year.  Turning 30 didn’t feel nearly as strange as the reminder that I had not already passed this milestone!  As for major events, Chris and I managed to stay on the continent all year and lay low.  He continues to teach computational fluid dynamics (Just smile and nod—I do!) at the Air Force Institute of Technology, and I was still attending births and teaching childbirth classes through May, at which point I took an early maternity leave to focus on my own baby and upcoming birth.  We did manage to have some unexpected excitement in April, when we discovered some major water damage in our home due to a small, previously undetected leak, and over the summer, when the Air Force sent Chris to Montgomery, Alabama, for some training for 2 months.  We quickly jumped back into school once that was behind us, and I’m in shock that a semester has already gone by!

It’s been another busy year of love and growth.  The sights and sounds around me tonight do represent a good deal of work to be done, but far more importantly and dearly, they represent a beautiful life that I am blessed to call my own.  Thank you for being a part of that life, and let us together give thanks to God, from whom all blessings flow!

                                                                        Merry Christmas,

                                                                        Jennifer, for the Martins

Monday, March 05, 2012

Looking Back

March 4, 2011

My life changed forever today. This morning, my sweet son was a perfectly healthy baby, albeit a bit delayed and unnaturally easy and mild-mannered. Then I took him to his developmental pediatric evaluation...

This is the opening line to my journal a year ago yesterday. That's right, we just passed the first anniversary of discovering Hosea's global developmental delay. Of course, nothing changed about him that day. He was still the same same precious 8-month-old boy he had been that morning. And yet...he wasn't. We didn't know until that day that we were dealing with a severe disability.

Walking back to the van was so surreal. I pass people and think that it feels strange to realize that they are probably having a fairly normal day. It's also strange that they pass me and don't realize that I've just been dealt one of the hardest blows of my life. You just never know who you're passing or what they're going through.

I got in the van and started toward the exit. I then realized that the Westminster Shorter Catechism CD playing was on the question, "What are the decrees of God?" I listened with fresh ears to the answer, "The decrees of God are His eternal purpose according to the counsel of His will, whereby, for His own glory, He has foreordained whatsoever comes to pass." That's right. And when God set the creation into motion, he foreordained that very song to be playing at that very moment. Because He loves me like that.

I actually made it all the way home and into my husband's arms before I began to cry. And once the floodgates were open, there was no holding the waters back.

I wept. I screamed. I cried like...well, like I've never cried before. Eliana wanted desperately to comfort me...poor thing. But it felt so liberating to let out everything I'd bottled up for the previous two hours.

I eventually regained some sense of composure, and Chris, Eliana and I had a talk about everything.

Eliana calmly asked, "Why would God do this?" (This realization came to her after she said she would pray for God to make Hosea better. "And God promises to give us what we ask for if it's what He wants, too," she said. So, I believe she was struggling with wondering, Why would God not want to make Hosea better?)

We told her about Job--how he was richly blessed and how God allowed Job to be tested and how his life was a testimony. How I managed to share this with Eliana at that moment can only be explained by the grace of God and the power of the Holy Spirit. I remembered my internal mantra in the doctor's office upon hearing the news--"God counts me worthy. God counts me worthy." Lord, please make me worthy.

Today, a full year later, Hosea is 20 months old and we still don't have a more specific diagnosis. Perhaps someday we will. Perhaps not. What is clear, however, is that Hosea is a very special child. He can now crawl and babble. He can pretty much pull to stand on his own, but he won't unless someone is ready to catch him if he falls. He wears glasses and soon he'll be wearing ankle braces. But, more importantly, Hosea is a darling little boy with a charming personality and a contagious laugh. He is loved and wanted and so very dear to us just the way he is.

To say that my life changed a year ago seems like an understatement. The adjustment we had to go through was so major, so long, and just so...painful. I felt like I was walking around as if in a dream for several weeks. And yet, here I am today. My life is so different now, but it's my life--my new "normal"--and it's a good one. The adjusting continues, and, I assume, it always will. I guess that's why it's more than simply "life-changing". Hosea's needs will continue to change my life as he continues to grow and develop and new challenges arise. The trajectory, if you will, is not so predictable. I suppose it never is. It's just that, now I don't assume.

I know I will probably wake up tomorrow morning and for just a moment--during the delay between consciousness and reality--I won't remember this. For just one moment, it won't consume my thoughts, my very being.

But then chapter 1 of my new life will begin...

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.