How I Finished Mourning the Loss of a Child Who’s Still Alive

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faith! My oldest daughter, who is now 11, was a caring, sweet girl who loved her family and friends. She was shy if you didn’t know her, but to those close to her, she was outgoing and full of laughter. When she was 6 a horrible turn of events forced everyone in her life say goodbye to the “old” Faith and begin to become familiar with the “new” one. Although no one for one moment stopped loving her, it was a huge adjustment — one that will likely be on going for the rest of our lives.

Faith fell ill with herpes encephalitis. When she first became sick, there were whirlwinds of tests and explanations — none of which I understood. When the neurologist showed me pictures of her MRI scan that first night in intensive care, I didn’t understand. I certainly didn’t understand the severity of the infection in her brain or what this meant for her. I cried when he told me how serious it was and that she will be lucky if she pulled through, and then I was left alone. I’ve never felt so alone.

I could spend days going into every detail of our 103-day hospital admission, but I’ve pushed aside many memories, trying to forget the pain, trying to move on.

We were moved out of intensive care and onto a medical unit, Faith still unable to move or speak, just lying there staring straight ahead. Another MRI revealed the infection had caused extensive brain damage. We were told to be prepared for a “new” Faith. How does a parent prepare for something so horrible? How does one adjust to going from having a sweet little girl to this new girl who only stares off into space? The answer is you don’t. You put your feelings on hold and busy yourself with her care and talking to doctors and family and friends. You don’t allow yourself to think or breathe. On the nights I was home, I would feel empty. Being home forced me to temporarily deal with all the thoughts and feelings I’d put on hold. Random things would make me think of all that would never again be a possibility. It all seemed so unfair.

Recovery from a brain injury is slow and painstaking, and each small step forward meant two steps back. We were told again repeatedly that this is likely as good as it gets and once again reminded that this could be the new Faith . This girl, this new Faith, slowly relearned how to stand, how to walk and how to talk — but where was the Faith I knew? Where was the daughter I raised for the past six years? She was gone, and in her place I found someone new, someone who can make me laugh and cry at the same time, someone who has the ability to light up the room with a smile, someone I love fiercely. Time has passed, and things in many ways have not gotten any easier, but one thing is clearer.

There isn’t an “old” Faith or a “new” one. There is Faith.

In the early days, it was hard to let go of my hopes and dreams. Although it took a long time, I’m no longer sad. I just have new hopes and new dreams and all in all, a new outlook on life.

I will always get upset about what’s happened, and it will never be fair, but I’ve moved on. I let go so I can enjoy the seconds, minutes and days without being surrounded by grief. It will always be an uphill battle.  Faith’s brain damage is extensive, she’s lost almost all of her frontal lobes, and the damage extends beyond that.

But I am strong and I am ready to link arms with Faith and head up the hill.

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The Art Project That Reminds Us We Can Do This Whole ‘Special Needs Parenting’ Thing

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A year ago, my water broke with a trickle around 4 a.m. I wasn’t having any contractions so I figured it would be a while before I had a baby in my arms. At 9 a.m. I completed the art project I’d been working on and insisted my husband hang it in our bedroom above the birth pool (which I refused to let him fill since I was “probably dayyyyssss away” from having a baby).

hard things

Then we went berry picking for three hours in 90+ degree weather.

I was convinced we needed strawberries for jam.

Well, the berries went bad in the heat on my kitchen counter because labor started later in the evening, and my baby was born early the next morning.

He came out screaming and didn’t stop (or sleep!) for several hours and soon impressed us with strong preferences and will. Little did we know this was a sneak peak into our next year.

Parenting is one of the hardest things I’ve ever done. It challenges me daily and has changed me immensely. I used to roll my eyes at terms like “special needs” because they sounded so euphemistic and cheesy, but I get it now. It’s special, not strange. Different, not bad. And sometimes it just is.

I’m humbled by the care of our community and thankful to know the vulnerability of having to rely on others after being a do-it-myself-er all my life.

And each night before I go to bed I look at my art project and take a deep breath reminding myself that we can do hard things. And indeed we already have.

danielle

This post originally appeared on Couch to Five Acres.

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The Moment I Realized Everything Was Going To Be OK, Despite the Diagnosis

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My fiancé and I had just gotten engaged and were discussing our marriage and having children. We each already had an older daughter from our previous relationships. I was 33 at the time, and we decided, to hell with it — we’ll do the kid thing first, then the wedding.

It was September 2013 when we began trying. I found out I was pregnant in October. From the beginning, I knew this child was special. I didn’t know why, but I just knew. I also knew we would have a boy, though no one believed me. The pregnancy progressed as usual: vomiting, grumpiness. In one ultrasound, we learned we were in fact having a boy and settled on the name Zachary (Zak for short). The testing to check for genetic issues came back with a 1 in 100 chance of Down syndrome.

When I received that information I said, “OK, no big deal, that’s a 1 percent chance.” I doubted it would happen. My water broke at 2 a.m. on June 23, 2014 — I was 36 weeks and 5 days along. Zak entered the world at 2:36 p.m. that day; he cried out, and then there was a huge crash of thunder — my boy came into this world making noise! His Apgar scores were great, and we all held him and loved him and marveled at his perfection.

About 24 hours later, the on-call pediatrician came in looking solemn. She looked at me while I was holding Zak and said, “I’m pretty sure your baby has Down syndrome. ” So matter of fact. So blunt. I was honestly shocked. I looked down at Zak and couldn’t hold back the tears. I didn’t even know why I was crying. I think society has just always made Down syndrome appear to be such a negative thing, so I assumed it was. Boy, was I wrong.

20150202_073153 Since my 8-year-old daughter was in the room, I placed Zak in the bassinet and went into the bathroom, knowing with all my hormones out of whack, I was gonna lose it. Two minutes later, my fiancé came into the hospital room bathroom and wrapped his arms around me and said, “Why are you crying?” I couldn’t even tell him a reason. He then said, “It doesn’t matter. He is our son.” That is the moment I knew it was gonna be OK no matter what. My fiancé was right. Nothing mattered. Zachary is our son.

The karyotype came back, and Zak did in fact have Down syndrome. I buried myself in information. I needed to know everything. I quickly became an advocate and knew I would fight for my child. We all easily accepted his diagnosis. Zak is now 7 months old and simply amazing. He’s reached all his milestones on time so far. He has no major medical concerns. He does have a small heart murmur and aortic stenosis. He has acid reflux. But our lives are just like every other family’s life. We have three beautiful children — one just happens to have been made with a little extra to love. We plan to marry in October 2016 (I want to wait until Zak can walk, so he can walk me down the aisle).

Zak has brought our entire family closer together. He’s the puzzle piece that was missing. Together we’re a family. To some we may not seem normal, but to us, our family is just as it was meant to be.

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How to Talk With Your Child About Down Syndrome

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2015-02-01 18.44.59-1 Recently, a few friends have asked me how they should explain Down syndrome to their children. This is only my opinion; it may not work for everybody. But I’m always open to discussion and love when others come up and talk to us about my daughter, Adele.

When I explain Down syndrome to younger children, I try to keep it fairly simple.

Down syndrome is not a disease. You cannot catch it. It’s a chromosomal condition.

We have 46 chromosomes. They make up who we are as people. Mommy and Daddy both give us chromosomes; we get 23 from Mom and 23 from Dad. These chromosomes decide how we develop and grow, how we act, if we will look like Mom or Dad. When talking to your child about Down syndrome, some won’t understand your explanation on chromosomes, and that’s OK; it’s not the most important part about Down syndrome.

Adele has 47 chromosomes. This one extra chromosome gives her some extra special gifts. Her eyes are almond shaped, her nose bridge is flatter, her ears are smaller and lower-set, her mouth is shaped differently, her tongue is a bit bigger, she has a smaller mouth and her palette is shaped differently, which affects her speech. It might be harder to understand her, not because she doesn’t know how to talk, but because she lacks some muscle strength and the inside of her mouth is shaped differently. She will do all of the same things you do, but it’s going to take her a little longer.

Because of her extra chromosome, she’s a bit floppy like a rag doll, so crawling and standing are a little more difficult, but she’ll get there. She needs to work on getting stronger; we do this with the help of some great people. Adele does some special exercises that help with strength and speech. When you go skiing or play hard or have a big, long game of hockey or soccer, sometimes your muscles feel a bit weak and you feel kind of floppy; this is how it is for Adele every day. She just needs some time.

She will love the same music as you and will like sports and gymnastics, just like you.  She has feelings, just like you, and she will love playing with her friends and laughing at silly jokes. Having the extra chromosome doesn’t make her any less of a person; she’s just like you. She just has to work a little bit harder at some things. Some school subjects might be a bit more difficult for her to catch on to, and some will be a little easier. Maybe math will be harder for her to understand because the numbers might be confusing, but she may write great stories in Language Arts class.

It’s OK to look; I do too, and it’s OK to ask questions. I like it when you come up to me and ask questions about Adele. It’s important to ask when you don’t understand something; we do this in school all of the time. When you’re confused or you need more clarification, you ask your teacher for help. This is how I feel when it comes to Adele — just ask me. I will answer your questions and hopefully help you to understand why Adele has some extra special gifts and how they affect her day-to-day life. Always remember that different is beautiful. We were all made to not look like each other. We are all unique. If we all looked identical or if we all liked the same subjects and played the same sports, life would be boring.

Children and adults with Down syndrome are just like you and me. We are all beautiful, we all have our own gifts, talents, weaknesses and strengths.

Be kind to each other. Be a good friend. Include others.

This post originally appeared on A Perfect Extra Chromosome.

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How I Faced Motherhood as a Woman With a Disability

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When Angel was born it changed everything. I thought I was ready for her since I’d read every baby book I could get my hands on, but of course I wasn’t. I don’t think anything could have prepared me for being a mother. It’s not that the physical part was hard. That was the easy part. No, what was hard and still is, is the emotional part.

Her first week, I tried to breastfeed but had to give up when I started having muscle spasms in my legs. They would almost throw me out of my chair. So I had to get back on my medication. I knew I had to be on it, but that didn’t stop me from feeling like I was a failure. I made my husband, Jake, give Angel the first bottle because I couldn’t bare doing it myself.

Having to ask for help was hard for me. I’m a hands-on person. I felt like if I asked for help it would make me less of a mom. Of course, I had to ask for help. Like when Angel got colic. The only thing that would help was Jake walking her around the house, bouncing her up and down and talking to her. I tried everything to calm her down, but the rhythm of walking was what she wanted and needed. So every day at 6 p.m., Jake would start the routine of walking her around, and I would sit there berating myself on how I couldn’t give her what she needs when she needs it.

The feeling of helplessness started to slowly disappear the older she got — with Jake’s help. He would work with me on finding easy ways to take care of Angel. We kept a bassinet by the bed that I could get her in and out of during the night, and during the day I used it to transport her around the house. I also had a baby sling I put her in when we left the house. Then, when she was too big for those, we used a belt to strap her to me as she sat in my lap. But the disappearing helplessness was replaced with something much worse. Possessiveness and anxiety.

Since my accident, I’ve always experienced anxiety in the car, but it got worse after Angel was born. I started having full-blown panic attacks if it was raining or snowing. Or if Jake was driving too fast, which was anything over 40 mph. I also had anxiety that if I wasn’t there, Angel would get hurt. I think every mom has that fear, but it kept me from being able to go on dates with Jake.

The possessiveness came in the form of me not wanting anyone taking the first milestones Angel went through in life. I’m not talking about her first words or her first steps. I mean, yeah I wanted to be there for those, but I knew there was a possibility I might not be. I’m talking about someone giving her her first piece of solid food or taking her on her first trip to the park. Just random silly things. I didn’t want to miss out on anything new she went through. So that made it hard for me to let anyone watch her. What if they gave her her first cookie and I wasn’t there?! I was pushing people away from me and driving Jake insane.

wpid-wp-1422052247221 When Angel was 6 months old, we moved to Jake’s hometown to be closer to his parents and for better job opportunities. It was supposed to be a time for new beginnings, but my anxiety was at an all-time high. That’s when I finally decided to get help.

After I got diagnosed with postpartum depression (PPD), everything changed. I finally had the energy and willpower to do things. I became more active, and my stress and anxiety was finally manageable. I can now let family members watch and enjoy Angel as well. But most important, my relationship with Jake improved.

I finally realized that, since becoming paralyzed, I’d been in denial. I finally could let myself grieve the life I wanted and appreciate the life I have. I wanted to be a massage therapist, but instead I became a mentor and stay-at-home mother. Who knows, maybe I will find a career later when Angel’s in school. But 2015 is a new year, and I will make the most of it. I will live in the here and now and finally enjoy my life just the way it is. Imperfectly perfect.

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This post originally appeared on A Day in My Paralyzed Life.

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My Music Teacher Said I Couldn’t Play Because I’m Blind. So My Classmates Rebelled.

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As a middle schooler, I rarely noticed or thought about my blindness.

I happily dashed from school to sleepovers to choir practice, leaving my cane at home and holding fast to my friends’ hands whenever roadblocks threatened to impede my progress. The angsty gloom and doom which typically clouds those tweenage years flew right over my head. Nevertheless, when the time came for me to attend chorus camp — a mandatory, ten-day retreat with 80 middle and high school students I didn’t know — I was terrified.

To my surprise, the first few days of camp passed with relative ease. In between choral rehearsals, campfires and talent shows, white-water rafting and swimming, and lessons in voice, dance and African
drumming, I daydreamed about our upcoming instruction in handbells and chimes, a skill I’d been dying to learn all my life.

We were told not to wear tank tops to handbell class, as the instruments were muted by pressing them against the shoulder. After changing clothes, I and the other first altos filed into class. The second sopranos were finishing a run-through of their piece, and the moment the crystalline music swirled into my ears, I was enchanted. The round sweetness of the notes, with their lilting, somehow liquid shine, reminded me of cotton candy — of that singular, sugar-spun giddiness the first fluffy bite always evoked in me. My throat tended to ache when I heard a song I desperately wanted to sing. My hands tingled with a wild eagerness to become a part of that sound.

The instructor directed my group to choose bells and to read the accompanying sheet music, which would have our bell’s note highlighted. One of the older girls, who was well-versed in music theory, guided me behind the table, carefully passed me my bell and opened her own music alongside mine.

“I’ll tap your hand a beat before your note comes in,” she told me.

Abruptly, the instructor abandoned her lecture and circled the table, drawing me aside.

“I don’t think it’s appropriate for Caitlin to participate in this. She’s not able to sight-read; if she makes a
mistake, it’s going to throw off the song. And the bells are very expensive… she might drop one or play it improperly.”

Now, with 24 years and plenty of self-advocacy skills under my belt, I can think of many things I should have said, many things I would have no problem saying today, either on behalf of myself or the
children I teach.

“It’s illegal for you to exclude a student with a disability from any activity.”

“We already figured out a solution to the accessibility problem, no thanks to you.”

“I’m no more likely to make a mistake or misuse an instrument than any other student.”

“This is a learning experience, and no one plays perfectly on the first try.”

But I was only 12 years old. Never in my life had an adult told me I couldn’t do something. Never before had anyone intimated that I was incapable of doing something. My hurt and disbelief manifested in stunned silence. The other students argued, loudly, on my behalf. Leah, a voice teacher whom I did not yet know well, objected furiously. I came out of my own shock enough to promise that I would pay attention and do my best. But the handbell instructor remained unmoved. I could sit and listen, but I would not play.

I remember the protective conviction I felt in Leah’s fingers as she took my hand and hustled me out of the classroom. Behind us, just out of my reach, the handbells sparkled into life. They sounded the way I
imagined the color silver must look. Leah caught my tears on her fingertips and hugged me tightly. She
guided me to the snack bar, bought me a scoop of chocolate ice cream and promised I would be allowed to play. I was permitted to join the handbell class on the final day of class, when the instructor grudgingly admitted that my “deficits” would be less likely to affect the quality of the performance. But by that point, I was tense, anxious, on edge. The handbells lost their cotton-candy clarity as I concentrated fiercely on not making a single mistake, on doing everything I could to prove the teacher wrong.

Camp was coming to a close, and the first altos, particularly the senior girls, had officially taken me under their wing. To them, what had happened in handbell class — and what little had been done to remedy it –was unacceptable. And unbeknownst to me, they had a plan all their own.

On the night of our final concert, each of the senior first altos wore the skimpiest tank top she owned. As the girls ambled past me, in no hurry to change their clothes at the dorm, one of them squeezed my shoulder and whispered, “Maybe this little delay will give her time to think about what she did.”

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Caitlin-Dreaming

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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