To the Dad Overwhelmed by His Newborn's Bleak Prognosis

45
45
2

My daughter, Namine has double-inlet left-ventricle heart defect (DILV) and caudal regression syndrome (CRS). As far as physical limitations go, the latter is certainly the more apparent disability. But as serious as Namine’s conditions are, she’s doing exceedingly well. We were in the grocery store yesterday, and Namine was being her normal hyper self – singing and talking and kicking her legs. I thought to myself, you know, I wish I could write a letter to Jessica and myself when Namine was first born, when we faced the daunting and crushing prospect of a dying child – a disabled child, unable to do anything by herself. It was a time when we were promised nothing but crushed dreams, a time when we faced nothing but dispair. If I could write to that couple and reassure them that God was still watching over them, I would. I think it’s good to reflect, to acknowledge what you have and give thanks for it. So here goes.

Dear Paul and Jessica,

I’m going to skip right over metaphysical impossibilities and assume you’ll believe every word in this letter. I know I wouldn’t, but hopefully Jessica will. She’s always been the better part of you, Paul. So assuming you trust me, I’ll tell you: I’m you. I’m writing this letter to you from roughly two and a half years in the future. I know you have so many questions, Paul — questions that you will rage at God to answer. Frankly, He won’t. Not yet. He answers our questions and prayer on His own time and for good reason. He loves you, Paul. You, Jessica, and your newborn daughter, Namine. It doesn’t feel like He does, I know. I know it feels like He’s tearing your heart out, because I remember how it felt.

I know you think about how Namine couldn’t breathe when she was born. I remember our tears. I remember trying deperately to get through her rushed, frantic baptism. I remember us thinking that surely God wouldn’t let her die so soon. She didn’t die. She didn’t die, but she’s still so fragile. And she needed heart surgery at only 2 weeks old – how unfair. And her legs. I know the doctors have promised that she’ll never move them. So many hopes and dreams you and Jessica had for your little Namine are gone. How unfair, how unfair!

You won’t find this out until much, much later, but I’m going to tell you now. You’ll find out from Namine’s cardiologist that the CRS saved her life. Her heart didn’t need to work as hard, sparing her the need for heart surgery right away. Yes, I know she eventually needed the surgery. But it occurred at a time when Namine had had the chance to grow and become stronger. She was able to wait until she was able to survive it. She was alive, Paul, she is alive! And she will grow and become even stronger. You’ll see. You don’t see it now, with so many wires attached to her tiny body, I know, but you’ll see. She will surpass all her doctors’ wildest expectations.

I know the trach terrifies you. I know you would never admit it to your wife, Paul, but you should. should have. Learn from my mistakes, and talk to her. You’ll find out that you share the same fears, and together, you are stronger. It was a lesson hard learned. Put down your fear and your pride, and trust your wife. And both of you, trust in God. He will get you through this. And He will get Namine through this. She’ll have the trach for two years, and I know for you that must seem an eternity. But it’s the past for me, and it seems to have gone by so quickly.

There are surgeries Namine will need, and you will feel that each one is worse than the last. You will feel trapped and crushed by the stress it will take on you and your wife, but you will lean on each other, and it will make both of you stronger. It will bring you closer together; together you will go through what will feel sometimes like hell on earth, but you – all three of you – will come out the other side a stronger, closer, more loving family.

I’m not going to give you a play-by-play with all the surgeries Namine will need. But trust me when I say that Namine will do just fine. God has her in His almighty hand, and He has carried her through. And those promises the doctors made? Don’t worry. She’s not mentally deficient – far from it. She’s as smart as you could hope for, and she’ll have you on your toes soon enough. She can move her legs just fine, and she’s learning to walk. That has been a particularly hard road, but Namine has come through amazingly well.

Paul and Jessica, I want to give you the assurance we never had. Know that all three of you will make it through. It’s not over for us either – Namine still has to get rid of her g-tube, and she has the Fontan Operation coming up probably in the next year or so – but Namine is so much stronger now. She has grown so much.

Hug her and kiss her every day. Always, always tell you how much you love you. Both of you. Never take a day for granted.

Sincerely,

Paul from the future

P.S. Namine loves Batman. Seriously, you should buy her Batman pajamas sooner than I did.

IMG_20140806_200721

This post originally appeared on eichfam.net.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

45
45
2

RELATED VIDEOS

JOIN THE CONVERSATION

How I Got Over My 'I Don't Want Him Labeled' Mindset

549
549
0

“I don’t want them labeled.”

If I had a dollar for every time I heard this, I could pay off my house, your house and probably have enough left for a nice new car. Honey, it’s time we had some real talk.

I keep hearing this. Hell, I’ve even said it myself. But, this isn’t about you. It never was. It hasn’t been about you since the moment the doctor said, “It’s a boy! Or girl!” Sorry, sunshine, I’m all for a pity party for one from time to time. But this resisting a label thing? That’s not helping your kid at all.

I’m not going to beat around the bush with this. Your kid (and mine) already has a label. The weird one. The troublemaker. The quirky one. The “What’s with that kid?” one. Why not get them the correct one? More important, get them the correct supports in place for success.

I believe the label is a necessary evil. I know being practical is about as much fun as watching paint dry, but it is what it is. Think you’ll get an insurance company to pay up for some sort of nondescript help? I can’t even get them to pay past 30 sessions of speech therapy, and my kid has an autism label. Plus, I get the added bonus of having my yearly conversation: “Why yes, I will still be taking him to speech therapy and paying out of pocket. He’s still very much autistic. He didn’t magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!”

And school? You’re definitely going to need a label there. No one is handing out IEP’s all willy nilly for kicks. You want that free and appropriate education the law entitles your child, you have to get the label. You just do. You want to get the best possible tailor-made education for your kid, you best accept that label that so terrifies you.

I get it. I really do. I was in denial for years. I didn’t want to see what was right in front of my face. Once I started accepting it, well, I got used to it. It’s not a case of getting better. You just start finding your kid’s own groove. I started following the tour guide that autism sent to me. Yes, there are frequent stops for french fries and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.

In other words, I got the eff over myself. Everyone just wants what’s best for their kid.

This post originally appeared on Autism With a Side of Fries.

Want to end the stigma around disabilityLike us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

549
549
0
TOPICS
JOIN THE CONVERSATION

Why I’m Thankful We Didn’t Know About My Daughter’s Disabilities Before She Was Born

429
429
0

DSC_0254-3 If I knew then…

that Ashlea would need a kidney transplant…

that she would have multiple disabilities…

that our lives would never be the same…

would we have done things differently?

I’m sad to say that we may indeed have done things differently. If we’d been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure, we would have assumed she would have no quality of life and we may have requested she not be resuscitated at birth. If we’d found out that same information in the first few days of her life, we may have decided to withdraw care (I know this is a contentious issue, but when our baby required full life support and was in complete renal failure, it was presented to us as an option.).

But we didn’t know.  

Thank God we didn’t know.

What we didn’t know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn’t know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is

that she would help us see what is really important in life…

that we would be OK with not getting the fairytale ending.

What an eye opener it’s been to live with Ashlea and her disabilities. If we’d known, we possibly would have made different choices. But we would have robbed ourselves of the joy and the delight that is Ashlea. We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it, it wouldn’t have helped. Because I wouldn’t have believed them.

Some things you have to learn by experience.

Thank God we didn’t know.

This post originally appeared on Thinking of Starting a Blog.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

429
429
0
TOPICS
JOIN THE CONVERSATION

To the Mom Who Thought a Down Syndrome Diagnosis Was Devastating News

698
698
1

Screen Shot 2015-01-21 at 10.36.25 AM If I could go back to the day I received what I deemed “the most devastating news ever” — that my newborn son had Down syndrome — I would say, “Girl, you shed an extreme amount of unhappy tears on a day that was supposed to be one of the happiest days of your life.”

I would tell myself, “Just wait, you’re going to experience a need to protect like you’ve never felt before. You will fully understand what the term ‘mama bear’ means.”

I would tell myself, “Greyson will always be able to turn your frown upside down.”

I would tell myself, “Greyson is going to teach you patience, empathy and compassion.”

I would warn myself, “You’re going to realize your special needs son is special — but not because he has an extra chromosome,”

I would say, “Don’t stress about what his future holds; cherish his preciousness now.

I would insist, “Don’t read the crap on the internet about Down syndrome or what ‘they’ say will happen.”

I assure myself, “Greyson is going to amaze you with his ability. You’re going to use the term ‘quick study’ when referring to your little man.”

I would console myself. “I know you’re going to worry about what strangers whisper about your son, but you will become oblivious to those around you. You won’t look for the stares. You’ll find strangers who are smitten with your blonde-haired, blue-eyed baby boy.”

I would tell myself, “You’re going to be so proud of your son and excited when he reaches each milestone. You’re going to become his biggest cheerleader, proudly touting each and every accomplishment.”

If I could go back to the day I got Greyson’s diagnosis, I would simply say, “You, with the love and support of your family and friends, got this! You’re going to be fine. More important, he is going to be fine. Actually, he is going to be better than fine.”

6188

This post originally appeared on Greyson and Gavin’s Ma.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

698
698
1
TOPICS
JOIN THE CONVERSATION

A Sign in Target Changed the Way I View My Son’s Autism

798
798
1

2014 brought so much change into my little world. It’s amazing how life can knock you off your feet and place you in a whole new galaxy when you least expect it. I should be accustomed to these life-altering events by now.

Almost 11 years ago, I held my 9-month-old daughter in my arms and watched her heartbeat stop on a hospital monitor. It still gets me… remembering that moment. If I allow myself to dwell on the memory more than a few seconds, my eyes will quickly fill with tears and my heart clenches. It was so long ago, yet it feels like wasn’t.

Losing Lexi changed me… for the better. I felt closer to God, closer to my husband, closer to friends and family and very much aware of every blessing and beautiful moment in life. Don’t get me wrong, I hurt badly for a long time and I still have flashbacks that cripple me. It’s true. Nothing is worse than losing a child, but that doesn’t mean there aren’t a lot of tough things in life. I’ve never been one to think that my bad is worse than your bad.

When Drake was born, in 2011, I couldn’t properly express the joy I felt knowing that I was finally going to be a mother again. Every ultrasound and echocardiogram told us we were having a healthy baby boy. But I knew Drake was autistic a year before he was diagnosed. I’m the classic Google maniac and knew everything about autism before I expressed my fears to anyone else. I had to reassure myself before I could even utter the words. I was scared — so very scared.

When Lexi was with us, I knew what needed to be done to fix her heart. It was never promised that she would survive, but we knew the steps needed to keep her alive. There were specialists who knew what was wrong and what to do about it. Six to nine medications a day kept her heart functioning. Autism is different. There is no magic pill. Drake can’t have brain surgery to get rid of it. For this I am thankful. I don’t want to lay another child down on an operating table for a major operation ever again.

I’m not yet one of those autism parents who thinks autism is a wonderful part of who my child is or will become. I’ve read so much on this disability, and I’m often in awe when someone says they wouldn’t change their child if given the chance. I wouldn’t change Drake’s sweet spirit or his love for simple things, but I would change him socially. Why? Because people are mean. I don’t want anyone to ever hurt my baby. If Drake continues to be as happy as he is right now and he learns to live independently, I can honestly say I’m OK with him having autism. Yet, here I sit, without my crystal ball.

I don’t know what the future holds, and this is the only part of autism that I abhor.

In the first few months after Drake’s autism diagnosis, I went from a state of constant worry to “mama on a mission” mode. I’ve put my teaching career on hold and made many other sacrifices to ensure Drake receives the therapy he needs. My husband and I have worked as a team every step of the way, and I’m so thankful. Every decision I make is based on what works best for Drake. He has intense ABA therapy four days a week and weekly occupational and speech therapy, which seem to be working. I cannot express how thankful I am for these people who work hard to help my child succeed. They love him and that makes me love them.

Please understand, Drake is not a difficult child. Yes, he’s currently nonverbal, and he has a few things that drive me up the wall (teeth grinding). Otherwise he’s so sweet and accepting of most situations. He isn’t rigid about routine, and although he’s awkward socially, he loves being around people. He does get uncomfortable in certain situations, but he tries so hard to cope most of the time. He’s happiest at home or in predictable environments… but aren’t we all? I’m so in love with Drake’s emerging personality, and I cannot wait to see how much progress he is going to make this year.

Recently I had an epiphany while in Target. I saw this amazing wooden wall hanging that read, “You are my greatest adventure.” I stood there, awestruck.

Drake is my greatest adventure. Autism is an adventure. Life is an adventure. I bought this piece to hang in my home. While this adventure may not be the one I thought I wanted… I’m ready for it.

This year I hope I can embrace this new adventure I believe God has set before me. Despite who I am and how often I fail, He always shows me such an exciting life. Some of these adventures are scary; yet He always shows me the color, beauty and wonder. I believe God opened so many doors for my family this past year. I can only smile when I think of all the things He will do as we continue this adventure with Drake.

I’m ready for the thrilling, exciting, daring, knock-you-off-your-socks moments. I cannot wait to look back on this adventure, sigh and say, “Wow, what a ride.” I’m ready for that moment. No, I do not want time to fly by, but I’m ready to know that everything was worth it.

This post originally appeared on “Walking With Drake.”

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

798
798
1
TOPICS
JOIN THE CONVERSATION

How an American Girl Doll Inspired This 11-Year-Old to Change the Way We View Disability

215
215
1

Melissa Shang knows firsthand what it feels like to grow up without being able to relate to characters in the media. The 11-year-old has muscular dystrophy, a group of diseases associated with weakness and loss of muscle mass. Books, TV shows and movies geared toward kids rarely feature people with disabilities, and those that do tend to include them as sidekicks rather than main characters.

So Melissa, 11, is embarking on a project to raise awareness about what it’s like to live with a disabilityShe and her sister, Eva, are coauthoring a book whose protagonist is a young girl with muscular dystrophy, which they promote in their awesome TED Talk below.

Melissa and Eva’s project began with Melissa’s love for American Girl dolls. One morning, Melissa expressed to Eva that she wished the company would release a “Girl of the Year” doll with a disability so she could relate to the character’s story. The sisters saw this as an ideal opportunity and started a Change.org petition to convince the company to do just that. The petition garnered more than 140,000 signatures, but American Girl didn’t respond, according to Mic, and instead chose “Grace the baker” as their 2015 selection.

That’s when Melissa and Eva took matters into their own hands and decided to write the book themselves. They hope to raise enough money to self-publish through an updated Change.org petition and a Kickstarter campaign.

“As my sister proved, people with disabilities can be protagonists,” Eva says in the video below, “and can change the world just as much as anyone else can.”

Watch their inspiring TED Talk in the video below.

h/t Mic

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

215
215
1
TOPICS
,
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.