Thank you, Dad, for showing me what a dad is and does.
Thank you, Kayla, for making me a dad and making me so proud.
Thank you, Bekah, for teaching me what being a dad truly is.
Thank you, Valerie, for walking beside me through life.
Happy Father’s Day 2010 to all of you dads out there.
Believe it or not, my wife was asked this very question as she struggled to get both kids, all their assorted “stuff,” and herself into the car to leave a birthday party. Seriously.
A little background: Rebekah, our youngest daughter, is 18 months old and functioning somewhere around a 6-month level. This means she is the size and weight of an 18 month-old, but can’t do things that are usually taken for granted like walk, sit up, or even hang onto your arm as you carry her on your hip. In addition to this, she also deals with extreme sensitivity to cold/wind. Because of her neurological problems and developmental delays, we have a disabled parking permit for her.
I’m not sure what made this perfect stranger walk up to my wife and ask her this question. Who made her part of the disabled parking enforcement team? Is the legal, valid placard hanging from our mirror not enough for her? Obviously not, since her followup comment was something along the lines of, “Oh, because it was obvious you could walk.”
I’m actually somewhat glad I wasn’t there–I probably would have let my reactionary human nature share some not-so-nice things with her and regretted it later. My wife was much more gracious, but left completely and utterly flabbergasted that someone could be so completely clueless and callous at the same time. Even now, days later, I’m still somewhat stunned thinking about it.
So, dear stranger lady, I pray that you and everyone in your family may never have to go through what our family has experienced in the last year. And, if you and your family are ever are affected by having someone in the family with a disability like Rebekah’s, may you always be safe from ignorant busybodies asking you “Are you handicapped?”
Bekah is special. She has to work so hard for everything physical that she does. She especially has a hard time reaching up and out with her hands. Last night, she was sitting in her Bumbo seat and Valerie put a little piano book in front of her at eye-level (unusually high for her to reach). We were organizing Kayla’s room a bit and Bekah decided to start playing the piano. I grabbed Valerie’s iPod Nano and shot a quick video of her playing her piano. Way to go, Bekah!
I’m not sure if it’s because I think they’re too cliche or if it’s just that I would hate to make them and then not keep them (as 95% of people do), but I just don’t make New Year’s Resolutions. Never have.
I don’t mind however, putting a few things down that I hope to get accomplished this year. Valerie wants me to do this 101 things in 1001 days, but I’m not sure I can come up with that many, so I’ve made this somewhat shorter list. I guess they’re “goals” of a sort. It breaks down into a few neat categories, so in no particular order, here it is:
- Figure out Kayla’s school situation. This is more of an early-in-the-year-necessity as Kayla will start Kindergarten in the fall. Ideally, I’d like to have her in private school. Financially, that may have to wait a year or two.
- Have semi-regular date nights. With a special needs child, it becomes both harder and more important to escape every so often. We need to find a reliable, adult (or almost adult) babysitter that we can “train” in order to feel comfortable leaving Rebekah. Ideally, I would like to shoot for a night (or afternoon) out without the kids once a month.
- Begin doing semi-regular family devotions. Kayla is at an age now where she should be able to sit and listen. I need to find an age-appropriate book or method to help out.
- Build up to 10% giving to our church. We were there at one point, but some unexpected things came along and we cut back a bit. I’d like to build up to that again. We’re not far off, so this should be doable.
- Halve our debt. We don’t have a huge amount, but I’d like to cut it in half. This will largely depend on what new medical expenses come our way for the next year, but I’m hopeful.
- Begin making a car payment to myself. The time is coming when I will have to replace my car and I don’t want it to sneak up on me. I want to 1) have enough to put down from making that payment to myself and 2) be able to just carry on with that payment to pay off a new(er) car in 4 years or less.
- Get rid of our storage unit. When we put the house on the market, we needed to de-clutter. Now, we are paying $85/month to store this stuff. Some of it we use and regularly go change out (winter/summer clothes, for instance). Some of it we don’t. I would like to sell or get rid of anything we can live without and refine the rest of it down to an amount we can fit in our attic storage areas in the house.
- Tame the yard. This is more of an ongoing, progress item. It will never be fully tamed, but I’d like to reclaim a bit more from the trees/scrub.
- Insulate. We really could use a few more inches up in the attic and it would be really nice if we could do something about the uninsulated finished basement (not my handiwork, the knucklehead who owned the house before us was responsible for that one).
- Bring my lunch. Once or twice a week would be good. Not only would it save money, but it would also give me time to complete some of the items below this one. My problem is that lunch is a social event for me. It’s hard for me to pass up that hour with friends to eat at my desk by myself.
- Complete some video games. I have a bad habit of getting partway into a game and not finishing it. Whether it’s boredom, simply not enough time to keep up, or the next shiny thing comes along, something pulls me away. I need to complete Zelda: Spirit Tracks, Torchlight, and Defense Grid. I’d like to make some progress on Elven Legacy, Sacred 2, and Civ IV as well.
- Read some more. I used to read a lot. I don’t have time to read a lot anymore, but I have a handful of books that I would like to prioritize to complete.
So, there you have it. My loosely organized list of goals I’d like to get accomplished in 2010. Here’s to a new year!
This has definitely been the most challenging so far of my 33-ish years on this planet. Most of you have probably quit reading or expecting an update from me since it’s been so long between posts. I promise, it’s not because I just got lazy! Some less-important things (including video gaming, blogging, reading, etc) just had to be set aside for a while. Here’s a little bullet list of 2009 (in somewhat chronological order):
- The year began in glorious fashion with our heater going out on New Year’s Eve. Thanks to Aaron and Steph, though, our family (including my visiting parents, sister, and their chihuahua) stayed warm until we could get it fixed. Add to that the necessity of digging up and replacing our septic tank line from house to tank (technically in 2008) and it made for a whirlwind family visit for the holidays!
- Our youngest daughter, Rebekah, was diagnosed with several neurological issues (microcephaly and lissencephaly) that have a drastic effect on her development and require a lot of extra care. These have led to CT scans, an MRI, eye surgery (for crossed eyes), lots of physical and occupational therapy, feeding issues, and our latest struggle, sleep disorders. We are still learning what it means to be parents of a special needs child (and, in fact, still coming to grips with that at times).
- We finally came to the realization that with everything else going on, we just couldn’t do the two-dog thing anymore and found a new home for our beagle, John T. Chance. We miss him, but it’s a huge burden lifted off our shoulders as he could be high maintenance at times. We replaced him with a beautiful Glo-fish named Ariel (can you tell who named her).
- We decided we’d had enough of keeping the house in tip-top shape and took it off the market. It didn’t matter anymore as anyone who would want our house, would never be approved for a loan without putting at least 20-30% down (due to the ridiculous amount of short-sales and foreclosures in our area).
- We celebrated 10 years of marriage in July. It’s so awesome to have my best friend with me every day, no matter what.
- I have mostly kicked a VERY long-lived habit of biting my nails. Still working on not biting around them, but I now have to clip them regularly which is a big thing for me. Thanks to my daughter, Kayla, for continuing to remind me not to bite my fingers.
- We found the church where God wants us to serve for this next phase of our life. It’s amazing to look forward to the next Sunday as much as we do and genuinely miss it when we don’t get to be there. Our small group is a huge support to us and we’ve made close friends with some great people.
- We successfully waged a battle against cuts to the state program that helps provide Rebekah’s therapy and she got to keep her aggressive therapy schedule.
- We have figured out that Kayla has a flair for the dramatic. She is quick at memorizing things, loves to sing (on key for the most part, though she does make up her own words), and is quite the little diva at times. So, even though that ballet thing didn’t work out well, maybe she still has a career on stage to look forward to.
- We were able to spend Thanksgiving with my parents in NJ. My 17 year-old sister who is well on the way to a career in dance was home for a few days from her boarding school in CT and my grandpa (who is now legally blind and lives with my parents) was there as well for us to spend some time with.
- Soon after Bekah’s therapy schedule was straightened out, we found out that we were approved for enrollment in a program that will help pay most of Rebekah’s medical expenses that aren’t covered by insurance. This is a huge blessing as her therapy alone was starting to add up to nearly $250/month.
- We closed out the year with some much-needed time off, a visit to grandma, aunts, uncle, and cousins in South Carolina, and some rest-time at home to get ready for 2010.
I am blessed to go to a job which, though it can be stressful at times, is challenging, rewarding, and stable. I am blessed to have two beautiful little girls who have me wrapped around their fingers. I am blessed to have family and friends who have been there for us when we needed them. I am blessed to be a part of a community-focused, Christ-centered church. Most of all, I am blessed to walk through life with my best friend, Valerie. I couldn’t do it without her.
Bring on 2010.
My lovely wife posted this and I had to shamelessly steal it and share it here for everyone who might still be reading my blog. This means so much to me right now, I can’t even put it in words.
Welcome To Holland by Emily Perl Kingsley
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.
There are really two reasons I’ve been so silent out here in blog-land. I’ll cover them separately and try not to be too wordy.
McAfee Family Protection
For the last 7-ish months, the team at InternetSafety.com has been quietly working away at the largest project we’ve ever tackled (and considering we conquered the entire continent of Australia, that’s saying something). We couldn’t talk about it for a long time, but this past Tuesday night at around 10:30pm all our hard work came to fruition when McAfee released the McAfee Family Protection to the public. Try a 30-day trial if you’re not sure it’s for you, but this is just another way that InternetSafety.com is helping to make the web safe for families.
I will say this about the project. We have a great team. Despite the fact that we spent more time every day with each other than our families over the past few months (and even a few nights), I can say that we still like each other afterward and can still stand each other enough to want to get together outside work (like lunches almost every day and a gaming party tonight). You don’t get that with every job. Go team!
I can honestly say that this has been the most challenging 8 months of our lives yet. Since my last update, Rebekah has begun Physical Therapy and Occupational Therapy (yes, she has an occupation–it’s “baby”). While she still has a long way to go (she still can’t sit up, roll from tummy to back, or crawl), her progress has been amazing (she now rolls from back to front, reaches for and fumbles around with toys, plays while strapped into her high chair, can sit up assisted, and has two teeth–not therapy-related). Her neurologist checkup yesterday went well and Dr. Janas was pleased with her progress. She’ll have another MRI in 3 or so months when she turns 1 and a followup/checkup after.
We know God has His hand on her. Pray for her continued progress with the therapy. It has been an amazing blessing that Valerie has been able to stay home with the girls since January.
Work is still busy and exciting, but not quite as crazy as the past few months and we’ve been learning a bit of a routine with Rebekah (although, she still sometimes just decides to get up at 3am and not go back to sleep until 7), so I will try to be more faithful with updating the blog (even if it’s just using a few spare minutes to post a stupid link or picture). Thanks for being patient over these last few months.
We got a call from Rebekah’s neurologist office with the results of last Friday’s CT scan. She had to have a scan of the sutures in her skull (the cracks between the plates in the skull) to see if they were starting to prematurely fuse. This would be bad because it would keep her brain from growing any further. The “fix” for this problem is a pretty extensive surgery where they separate the plates by drilling/cutting. Afterwards, the child has to wear a cranial helmet.
Praise God her sutures are normal! Of all the things we have to worry about, major head surgery was not one of the things I wanted to add to the list. So, we’ll keep pressing on with testing to learn more about what we might have to expect and we’ll keep thanking God for providing this answer to prayer! It has amazed us the number of people across the country that have been praying for little Rebekah.
Oh, and next week, we start all the paperwork to get enrolled in “Babies Can’t Wait”–the Georgia program for early intervention physical therapy. As a little aside, last night, she grabbed hold of her paci and put it in/pulled it out of her mouth a few times. She is also kicking her legs over, but hasn’t figured out she can keep going and roll over–just yet.
I’m going to let my wife provide this blog entry. She did a fantastic job of getting all this down on “paper” and communicating what we do know (and what we still don’t).
Hello friends and family ~ Thank you sooo much for praying for our family!!
We got to go to the Neurologist this morning to have them read the MRI results and explain what has been going on for us. She took the MRI results and went through them line by line and explained everything. Things mostly look good! Praise the Lord!
She said that there are no tumors, clots, or signs of stroke in the brain. There is a “slight simplification of the gyral pattern” in the brain. Which means that the folds are not as complex as they could be, but the doctor said that could change. The main core of nerves running from the brain are all fine! There is a lack of myelination in the brain (fatty insulation around the nerves that help send the impulses), but that could develop later too.
We are going for blood work next week for genetic testing for Lissencephaly. If Rebekah does have this disorder, we may be looking at seizures in our future. They will also do some metabolic testing to look for enzyme deficiencies. She may be deficient in some enzymes that help her break down her food to produce the energy that is needed to help her grow. Certain enzymes can be supplemented. She also ordered another CT Scan for the skull. Her soft spot is already very small and she is concerned that the plates in her skull have already begun to fuse. If they have fused, we will have to do surgery to open them so the brain will have room to grow.
Rebekah will go back for another MRI at the age of 1 year so they can compare the growth of the brain, the gyral patterns, and the myelination. We will go for another check up with the Neurologists in 4 months.
The doctor said that Rebekah looked good in her physical development. She said that she is fine with head stability and other developmental milestones. She mentioned that she thought her trunk control was a little weak. She gave us a prescription for the Georgia program called Babies Can’t Wait. They are a program that will come and work with Rebekah and do some therapy with her to make sure she is reaching her milestones. Chris mentioned that Rebekah fights sleep SO hard. The doctor said that people with Lissencephaly do have sleep disorders – so that may be connected.
She also said that her crossed eyes are a totally separate issue, so we are keeping our appointment with the ophthalmologist on the 27th.
Praise the Lord for His work in Rebekah’s life. We are so appreciative for you and for your prayers for our family.
So, we still have a long road and lots of unknowns, but we know God has his hand on little Rebekah (and all of us).
I haven’t blogged in a while, but I can’t sleep right now, so I get to ramble on here. Things have been a little crazy. Rebekah is 4 months old now and definitely nothing like big sister Kayla (which is fine). Kayla would practically put herself to bed and was sleeping through the night at about 3 months. It’s been an interesting few months.
When she was about two weeks old, she began what we would later figure out was reflux, but until we did and got it diagnosed by her pediatrician, she screamed and squirmed every night for about 3 hours until she wore herself out. She is now on Zantac and the reflux is much better. Since then, we’ve been through “the crud” causing puking and eventually a minor ear infection (nothing 10 days of Amoxicillin couldn’t clear up) and now she’s on Albuterol treatments a few times a day as needed.
Tomorrow is a big day for little Rebekah. At her 4-month checkup her head was measuring at a very low percentile. She has always had a small head and it was even something they were concerned about before she was born. Valerie had multiple ultrasounds and even a fetal MRI, but the doctors all gave her a thumbs up. Rebekah’s pediatrician decided to send us for a head CT at Children’s Healthcare at Scottish Rite. Due to some irregularities that showed up on the CT, she goes for an MRI (again at Scottish Rite) tomorrow. The hard part is that due to the need for the patient to be very still, they have to sedate her (which is a bit scary).
Her pediatrician is supposed to get the results the next day and will call us, but we don’t have an appointment with a neurologist until 2 weeks later, so the waiting might be a bit tough. Amazingly, the neurologist office they referred us to has 7 pediatric neurologists in the office. SEVEN! We are truly blessed to have some of the best pediatric facilities in the country not even an hour away.
So, we’ll be praying for little Rebekah tomorrow (as we have been all along). Despite a radical change in how much personal attention she receives now, Kayla has been awesome throughout it all. I will try to update about Rebekah when possible. These next few weeks will probably be just as crazy as the past few have been. On top of all that, we have two insanely huge projects in the works at the same time at work, so it’s no rest for the weary there either.