We shot this video with our NICU nurse April Graves. St. Thomas Midtown did an amazing job!!
Thursday, May 15, 2014
Wednesday, January 22, 2014
This Mom Hit the Nail on the Head!!
7 Things You Don't Know About A Special Needs Parent
About 6 million kids in Americareceive 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 am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. 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.)
6. 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...
7. I want to talk about my son/It's hard to talk about my 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.
Wednesday, January 15, 2014
Tuesday, January 14, 2014
Prep work!
Today I had a meeting with Phil Toothman from March of Dimes. He prepped me for my radio interview on Tuesday. I'm nervous! Luckily, it isn't live. Still working with Marnie on tshirts. We will have the proof of the shirts soon for everyone to look at. Thanks for supporting our family as we embark on this new adventure as the 2014 Music City Ambassador Family!!
Monday, January 13, 2014
Our March of Dimes Story
When Landon and I decided to start a family we never knew
what an incredibly hard, but rewarding road we were in for. We thought it was like the movies. You decided to have a baby, you become
pregnant and in 9 months you deliver a healthy crying baby. But for so many families it just simply
doesn’t work that way.
In September of 2006 we were overwhelmed with joy to learn
that we were expecting. Around 6 weeks
into our pregnancy we learned that we were having a miscarriage. We were heartbroken. We had no idea why, and were basically told
that lots of women miscarry on a daily basis and it was the body’s way of
removing a non-viable pregnancy. We were
given the ok by our Dr. and became pregnant again in October of 2006.
Everything was going perfect with my pregnancy until around
week 18. My blood pressure became high, I
developed protein in my urine, I was swelling, and was later diagnosed with
preeclampsia. We spent the next 2 weeks
trying to manage it with blood pressure medication, and at 20 weeks were
thrilled to find out we were expecting a baby girl. The medication started to not work as well
and it was then that I had to withdrawal in the middle of nursing school and go
home to spend the remainder of my time lying on my left side. At 27 weeks I began to have an uneasy feeling
and had not felt the baby move. After
phoning my Dr. and doing kick counts, I felt her move and went to bed. I woke up at 2am with a horrible pressure and
pain in my abdomen.
We made our way to
Labor and Delivery where we then learned that our baby had stopped growing 2
weeks prior and was very small for her gestational age. Her heart rate was so low she would not
likely survive a C-section, and even if she did, our hospital, which was then
in Alabama, could not sustain a baby of her size due to lacking having a
NICU. On May 6, 2007, I delivered a
beautiful 1lb. 8oz. stillborn baby girl who we named Ella-Grace. Devastation, grief, despair, anger, and
empty, do not even began to describe the feeling of a mother leaving the
hospital with empty arms. Two weeks
later I was admitted to ICU with 5 blood clots in my lungs and literally on the
doorstep of death. After recovering from
that we learned that I had not one, but two, blood clotting disorders that
played a heavy role in my miscarriage and stillbirth.
In late 2008 we decided to try again to start a family. This time we chose to come to Nashville, TN
and find a Dr. who specialized in my blood clotting disorder, and a high risk
OB/GYN. I had some testing and various
things done and was then given the go ahead by the doctors. In Feb of 2009 we learned that we were
expecting for a 3rd time. We
lived in Alabama, so we traveled back and forth to appts in Nashville. I had to take blood thinner shots twice a day,
and be on extremely light duty/bed rest pretty much the entire time. All was going good until July; I started to
develop preeclampsia again. Once
learning of this, we immediately packed our bags and temporarily moved to
Nashville about 2 blocks from Baptist Hospital and my OB/GYN. We wanted to be prepared this time if things
went south like before. I began strict
bed rest and was seeing my Dr. once a week and a maternal fetal Dr. once a week
as well. We continued that until the day
came when they said, “Go directly to the hospital.” I was then 27 weeks pregnant.
Upon arriving in
Labor and delivery, our baby was showing signs of distress so I was quickly
prepped for surgery and whisked away to have a C-section and deliver my baby
who was too tiny to be born, but would die otherwise. Landon “Parker” Daniel was born August 17,
2009 at 2:23p.m. At Baptist Hospital. He
weighed 1lb 8oz. and was 12 in long. He
was on 2 different types of ventilators, had collapsed lungs, a Grade II brain
bleed, numerous blood transfusions, and bacterial meningitis that almost killed
him. He fought for 3 months in the
NICU. Landon and I kept our apartment a
few blocks away from the hospital and went to the NICU for virtually every
single visit we could. Having lost 2 babies
and being so close to losing another one, we didn’t want to miss one second
with our sweet boy.
During our stay in
the NICU, we were surrounded by the best and most caring nurses and
Neonatologists that we would have ever hoped for. Not only did they save our baby but the NICU
journey inspired life long bonds with the staff, and even the special Gruen
family that have become like family. We
even have a March of Dimes team together.
Parker came home to Alabama in November weighing a whopping 4 lbs. and
brought so much joy into our household.
Since bringing Parker home we have been on a rollercoaster
of up and downs. We have learned that he
has a Visual Impairment, Cerebral Palsy, he is non verbal, walks with an
assistive device, wears leg braces, and attends every kind of therapy you can
imagine on a weekly basis. Although it
takes him much longer to do things, he is working hard, and meeting goals. Slow and steady wins the race right?? He is an amazing little boy who loves music,
his chewy toys and giving kisses. His
smile can brighten any room, and make the worst day better when he wraps his
hands around your face and gives you a big kiss!
In August of 2010, to our huge surprise we learned we were
expecting again. But how can this be I
asked?? After Parker I had an Intrauterine device that was suppose to be good
for 10 years!!! How am I going to do
this?? We once again made the trip to
Nashville to use our same OB/GYN. He was
also astonished seeing as how the IUD was exactly where he put it. I was just the .1%. I was told to go home and prepare my heart
for a miscarriage due to the removal of the IUD and my lab levels. I started my routine of 2 blood thinner shots
a day and we were terrified out of our minds.
To my surprise I had an uneventful pregnancy and on May 9, 2011 Graham
Harrison Daniel was born at 7lb 3oz. 20in long. He was a huge shock but he was
just what we needed and was a perfect gift from God, and definitely completes
our family.
In November of 2011, Parker’s therapy that was provided by
Alabama early intervention was coming to an end. At the age of 3, these children typically
merge into the school systems to hopefully catch up with their peers. We started to look at our options to choose
carefully the best placement for Parker. Not only for school, but for medical
care. We decided that the best place for
Parker was almost 3 hours away at The Tennessee School for the Blind. Landon got transferred with his company, we
packed up our home and our life, and moved to Nashville Tennessee. It was hard leaving our home and all of our
family back in Alabama, but we made the decision that was best for Parker and
we haven’t looked back.
Without the hard work and funded research of March of Dimes
we aren’t sure our boys would have survived.
Especially Parker. While so many
families have a NICU story of happily ever after, I am pleased to bring you our
story. Although it is happy as
well. We as a “special needs” family
face trials and hard times daily. Parker
is not society’s version of “perfect”, but he is perfect for our family and we
couldn’t imagine life without him. We
are a family who has experienced the whole realm of possible outcomes. We have had a miscarriage, stillbirth,
prematurity, full term, and our Parker lives with special needs everyday. I thank March of Dimes for continuing to do
what they do so maybe one day every single family can bring home a big healthy
baby. And to all of you families out there
with special needs children, there can be incredibly isolating and lonely
times. You are not alone; we are all
together fighting the same battle. Keep
fighting and pushing forward, because at the end of each terribly exhausting
day it is very well worth it.
Wednesday, March 28, 2012
Sunday, February 19, 2012
The story of "us"
Today was my "mommy day". It's a day every so often that Landon lets me be completely and totally off. He takes care of the kids and runs the household and I get to just do whatever it is I want to do. Although that usually consists of sleeping this day and age, today I thought I would lay in bed and read a little from the book I have been reading for the past couple of months. As I was laying in bed reading I could still hear all of what was going on at my house and I couldn't really concentrate on what I was reading for all of the crying and whining that goes on here in just a typical day. I laid my ereader down and just listened for a second. Usually when I'm the one being the caregiver and I'm trying to pacify everyone and get stuff done the sound of crying and whining and cartoons and toddler music in the background is enough on most days to make me feel as if my ears might start bleeding. However, today was different, today was sort of an eye opener so to speak. While listening to all the commotion going on in the living room I couldn't help but to smile because of what an absolute beautiful sound it was today. I started thinking back to when the sounds of our home consisted of our dogs and country music on the television, because there were no kids that lived there. I was thinking about how our lives had changed so much in the past 7 years. Since this blog started as we were expecting Parker, a lot of people don't even know the actual story of before Parker. The story of how Landon and I became an "us". So I decided to back track into our journey a little and explain how we started out, how we met etc. This story starts back in 2002, I was working at a hospital in Florence, Alabama as what they called a multi-skilled technician which was a catch all phrase for "whatever the nurses told you to do" and I worked 12 hour night shifts. My best friend also worked there on another floor during the same shift. I had a boyfriend and a pretty simple life that consisted of not many plans for the future and a whole lot of working and bills. I got a phone call from my friend saying that this "really cute" man in some type of uniform just passed by the nursing station from visiting his grandmother in the hospital and she was going to go talk to his grandmother and find out if he was single or not. This was of course for her not me because like I said earlier, I had a boyfriend. I said "ok, well let me know what you find out" I hung up the phone, laughed to myself and went about my business. To make a long story short they started dating and life kept on happening. That guy was a real nice guy named Landon and the four of us would double date some. A couple of months went by and my friend and Landon for whatever reasons they had decided it wasn't working out and called it quits. Well I just assumed we would never see or hear from him again and never thought another thing of it. My friend and Landon remained on speaking terms and would talk from time to time. Just a simple how have you been kind of thing. Well fast forward to February of 2005. On February 8, 2005 my relationship with my then boyfriend started to unravel. Actually it had been unraveling for quite some time and I was just too afraid to admit it for fear that I couldn't live without this person(who shall remain nameless). The fact was that the relationship was far from perfect and a real terrible time in my life. I deeply loved him and was prepared to possibly spend the rest of my life with him. I really felt as though I had given every opportunity for it to work out and it had come time to stop being the only person willing to "work" at it. So we parted ways. I was devastated and spent the next 2 weeks depressed, unshowered, and laying in the bed basking in my own self pity. One night or actually morning my cell phone rang and it was my best friend claiming she had the best idea. She had cooked up in her mind that I should go on a date with her ex boyfriend Landon. Completely disgusted with the idea of dating anyone ever again I said thanks but no thanks and do not try to fix me up with anyone. We hung up the phone and little did I know, she then preceded to send Landon and email with my info and told him the story of my breakup and her idea of how we should go on a date. The next day my best friend and I had plans to meet up with another friend of ours in Birmingham for a girls night out. Still in my pity party I looked disgusting and felt even worse, but we were off to Birmingham. Well on the way my friend decided to make an impromptu stop by you guessed it! Landon's house. Even if I wanted to pursue a relationship(which I didn't) I knew I had nothing to worry about the way I looked that day he was never gonna ask me out! Well we went in and visited and he was the same old extremely nice Landon he had been when she dated him but I had no intention of dating him. Before we left that day he asked if I wanted to go to dinner sometime. Completely shocked because I'm telling ya, I looked like poo, I nicely said probably not and we left. That night in Birmingham as we were getting ready to go to sleep my phone rang and it was Landon. He had called just to talk. We talked and after that call had decided that we would go to dinner. However, I made it perfectly clear that I was heart broken and going through a lot in my life and we could be just friends but nothing more. One dinner turned into several and I found Landon to be the easiest person to talk to ever. We would just sit and talk for hours on end. He slowly started to turn into one of the best friends I had. As time went on I started noticing that I missed him when he wasn't around. Before I knew it, he had completely won me over and I was in love with him. We dated for 5 months and at that time decided we wanted to spend the rest of our lives together and we got engaged in July. The following May we got married in an evening ceremony at Colby Hall on the campus of The University of North Alabama. It was the most wonderful day. I couldn't believe I had found my best friend and soul mate thanks to my friend that I told to butt out that refused to listen. HA! So needless to say I am most thankful for her meddling and emails against my better judgement. So there it is......The Story of "US" That is how we met and how we became one. There is an incredible amount more to our story that I am going to explain in the near future. Some of it blissfully happy and some of it terribly heartbreaking. So it will be over several blog posts. Until next time, Goodnight Friends
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