Our Loves

Tuesday, December 18, 2012

Want to sing?

The Christmas season is such a magical time and we have so many things we love to do with our family this time of year.  We all go to a Christmas Cantata the first weekend in December to kick off the season and it stays busy with events from then on out.  Luke and I were so lucky to get to go with friends to the Prestonwood Christmas program this past Sunday.  It was such a precious experience to be there with him.  This year Luke is really starting to understand that Christmas is more than just Santa Claus and presents.  It warms my heart to hear the thoughts that come from his innocent little mind as he is taking it all in this year.  I love hearing him say anything about “baby Jesus.”  So sweet!!  

We also love Christmas music, but I really try my best to wait until after Thanksgiving to listen to it.  I did cheat a little and listen to my favorite Christmas line up during a few workouts before Thanksgiving, but we didn’t start playing it in the car until after Thanksgiving because as Luke liked to say this year “it’s still fall why are there Christmas lights up?”  But ever since Thanksgiving Day finished up we have been listening to our favorite Christmas CDs and radio stations.  

As much as I love the music and can’t wait to hear my favorite songs, I do have feel a little twinge when Christmas music starts each season.  It can momentarily transport my mind to some very emotional places.  The first year after the boys were born – when things were pretty much at the lowest point we have and hope to ever experience in our life - with Preston and my Dad’s surgeries, the boys failure to thrive and hospitalization and Randy’s father passing -  I just really could not listen that year.  

The year before when I was in the hospital trying to put a halt to pre-term labor time and time again, many times on magnesium unable to get up and being pumped full of drugs, we would just sit and listen to KLTY playing Christmas music through the day and night.  One night in particular it was just before my Dad’s birthday – Dec 15th – I was unable to sleep from the magnesium and stadol (kind of like morphine) combo that were making me an itchy crazy person.  Ashley and my Mom were sleeping on a pull out couch bed and Randy was in a recliner chair.  The Christmas music kept me company that whole night while I lay in that hospital bed praying. 

It had been another scary day but we were starting to get a little used to it – well at least I was and Randy wasn't nearly fainting each time the doctors came in with news so I think he was too.  Also, by this point I was around 27 weeks so viability was not as risky as it had been in  the weeks earlier.  I was unable to sleep and feeling pretty crummy and the Christmas music was playing in the background of this darkened labor and delivery room.  The only lights were from the IV pump, and the monitors I was on and the radio across the room with the red numbers 94.9  shining on the display.  I can still see the image of those glowing numbers in my mind.  I remember feeling the boys rolling around inside me and just sitting and listening to the soft music play as the hours passed by.  I have always had a love for Christmas music but this year sitting in that room not knowing what was ahead for my little family I felt such a peace hearing songs about the birth of our savior.  These two songs in particular I remember hearing played again and again as the night went on.  They are precious songs about Jesus that to me as so touching  -

I don't think I was never as scared as Randy was, especially in the beginning, I think the Lord was protecting my heart to in turn protect the babies.  But this night I was struggling with what might lie ahead and I think the drugs and the situation were starting to wear on me.  I just listened to these two songs over and over as they played through the night and I felt a comfort that can only come from the Lord. 

Like I said the next year, we were in the hospital again but this time I had two babies in my arms that were not well and it was so much more real. Preston’s head was coming down from its bowling ball sized swelling from his cranial vault remodel, but his vomiting was up to 8 times a day.  Luke was only eating 10 oz total a day, my Dad was home recovering from his heart attack and surgery but he was still very weak and we were all still so worried about him.  Randy and I had just returned from Ohio after attending his father’s funeral after his sudden passing right before Thanksgiving.  We were not in a good place mentally and emotionally.  We were in the lowest place I have ever been and most definitely Randy has ever been.  We checked in to Children’s Medical Center with both boys through the ER in early Dec and did not leave until Christmas Eve afternoon.  Those day were scary and really days no parent wants to go through with their child.  At that point Christmas music just made my heart hurt worse, ….until the day we finally got to go home – Christmas Eve!  Things were still rocky, Preston was sent home with an NG tube in place, all our head were still in a fog and we would be back in the hospital not to many days after Christmas, but we were all going home together – for Christmas.  We were sitting in our living room, – Randy, the boys and I, Ashley, my Mom and Dad with the only presents we had were 3 for the boys from some very sweet friends.  As we sat there, most of us on the floor, I absolutely didn’t care about presents or the perfect wrapping paper or Christmas plans or meals.  I just thanked God we were all still together, able to sit in that room and all just be with each other.  I listened to these two favorite songs and just cried in thankfulness for Christ’s birth, the salvation He brings us, the hope He gives us, the miracle I witnessed with my Dad and the fact that we will still see our family of believers again someday.  That gave me strength to know no matter what the days ahead brought us – there was hope. 

Now we fast forward 5 years from those days in L&D and we have two amazing little boys who are full of energy and life - one of whom loves Christmas music like his Mama.  We love to sing and dance in the car listening to Christmas music.  Luke likes more of the typical kid songs, like Jingle Bells and Up on the Roof Top, but Preston, oh Preston loves my favorite two songs. Car rides are the some of hardest times for Preston and his communication.  He is usually pretty quiet or repetitive with his words in the car unless you can find music that really interests him.   Now he likes me to put it on my burned Christmas CD of my favorite songs and he will say “new song” until we get to “this one” Joseph's Lullaby or “this one” Here with Us and then that is followed by the sweetest question of “want to sing?”   During the song Here with Us I'll even catch him swinging his arms in the air from side to side.  It will practically melt your heart!  He doesn’t really know the words so much but he likes to sing like he does.  The sentences are still so new for him that they are very precious to us and really so amazing to hear.  Now he may love these two song because I play them a lot, but I like to think it’s because when he wasn't born yet and we were all praying they would stay put a little longer, I listened to these two songs over and over as they played on KLTY through the night praying for the Lord to protect my babies. 

So each season when the Christmas music starts my heart can feel a little pain from the past but it also feels a lot of thankfulness for the things God has brought us through, along with hope and peace for what’s to come.  Isn't that what Jesus brought the world that night so long ago when he was born in a manager???  May your Christmas be filled with many blessings and precious time with family and your new year full of the hope that only Christ can bring!!! 

Tuesday, March 13, 2012

Two great reads

A therapy Mom shared this article on FB today and it's a pretty spot on, honest account of being a parent of a special needs child. I think being a Mom of a special needs child is not a club many would choose to be in if given a choice, but the blessings found in it are abundant and the insight gained is amazing. I have lost good friends during this journey and gained others and grown even closer to the very best ones. That saying love changes everything sums it all up!!! Thanks to all my friends who sometimes give me a break and most of the time just give me a hug! I love ya'll!!!

The second is the blog post referred to in the first article and it is written from a father's perspective. Very interesting to hear things from a father's point of view. I can definitely testify that men handle this so internally and so differently. They don't make Mom friends at therapy to vent or sing praises to. They probably don't sit in their car and have a "cry it out" session either. Father's do the heavy lifting and never seem to get that weight taken away, even if just for a second. They are the one's who dry the tears as much as they can and keep you moving forward. I think you will all learn a lot from this father's perspective. I know I did!

Here's the link, but I have copied and pasted below:

6 Things You Don't Know About A Special Needs Parent

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

My 3-year-old son Jacob is one of them. He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.

Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.

Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed. Follow Maria Lin on Twitter: www.twitter.com/marialinnyc

This is the blog post Maria mentions in her article:

Five Things You Should Know About a Special Needs Family

Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I've experienced the joys of a family growing stronger together in the face of a true unknown with Katy's chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don't show many - if any - people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a - or rather about our - special needs family, at least through my eyes.

1. We’re ostracized.Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” - or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.

2. We’re jealous.Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than our little one simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do - and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.

3. We’re scared.We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade her quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive - for better or worse.We constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?

4. We’re good at hiding things / We’re not good at hiding things.I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband - a strong man - does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.

In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude. For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.

5. We’re stronger than you realize. / We’re more fragile than you realize. We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia - more than all our other children combined. We’ve waited in private agony for her to be returned to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day - even 10 minutes before - but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.We’re human.So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or are actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.

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