Thursday, June 12, 2014

Two orphans in dire need of our help

This is Gene and Ernie. Gene will be 16 in August and he has Down syndrome. Ernie will be 4 in December and he has been diagnosed with hydrocephalus. These boys are both living on borrowed time. Gene is already in an institution and isn't doing well in the current situation. In August, he will be transferred to a worse place with no hope of ever being adopted and knowing the love of a family. Ernie will be transferred to an adult mental institution on his birthday. Did you read that?  This BABY will be in an ADULT institution as of December. Ernie will most likely die from exposure, abuse, or malnutrition within his first year in the institution. Why are these boys being transferred? Because they were, unfortunately, born in countries where people who are differently-abled are seen as worthless, cursed/a curse on their families, "a lump of flesh and bones" (quote from an orphanage worker about a child with Ds), not worth investing in or loving, and a burden. If you have seen Wesley, you will know that this way of thinking is NOT TRUE.

People with disabilities deserve to be loved and poured into. They can thrive and lead "normal" lives! In the U.S., these boys would receive therapies to help them succeed, they would go to school with their peers, they would receive necessary medical and dental care. Where they are now, they are deprived of all of this, in addition to not having families. Why waste your time and money on someone who is of no benefit to society, right? Can you see the warped lens through which they're being viewed?

Gene is in a country where the adoption process moves quickly. He just needs a family committed to him by August and he will avoid transfer. He has over $16,000 in grant money for his adoption. That is over HALF of the adoption costs that are already covered!

Ernie also needs a family committed to him by December. He has about $1,500 in grant money but he is so loved by the Reece's Rainbow community, that I know there are people who would help his forever family to fundraise.

PLEASE see these boys. Please see their potential. I can put you in touch with families who have adopted children with special needs so you can see the transformation that comes from being in a loving, secure environment.

If you are not feeling called to adopt, would you do something in honor of Wesley's 2nd birthday tomorrow? Would you consider donating $2 to each of these boys? Or even just one of them. All donations made through the links below are tax-deductible. If you are unable to donate, please pray for these sweet boys and their future families. I am praying that each of them will be spared the horrors of an institution.

To get an idea of what their future holds, you can watch this 5-minute video (it's kind of graphic, just to warn you):

Ernie's info and donation page:

Gene's info and donation page:

Thursday, March 20, 2014

World Down Syndrome Day 2014

We're almost 2 years into our journey with Down syndrome and I thought I would take the opportunity to celebrate it on World Down Syndrome Day - March 21 or 3/21 for Trisomy 21, which is the most common type of Down syndrome.  Before having Wesley, I will admit that I believed people with Down syndrome all looked alike.  (And it's OK if you thought the same!) It's true that they can share many common physical features such as a flattened profile or nasal bridge, extra folds of skin at the inner corner of their eyes (epicanthal folds), almond-shaped or upwardly-slanted eyes, and small, low-set ears.  After seeing so many beautiful faces of those with Ds, I've realized that they all resemble their family members more than anything else.  On this day where we celebrate Down syndrome and campaign for acceptance and inclusion, I present this video of the loved ones of families that we're living life alongside online and in real time.  I love seeing the joy they bring and how precious and valued they are.

Thursday, October 31, 2013

Final post of Down Syndrome Awareness Month

(Re-posted from Facebook)  I’ll end Down Syndrome Awareness Month with a horror story, which is appropriately fitting for Halloween. (Link below) Before I do that, though, I hope that my posts have given you some insight into Wesley and Ds in general.  What the Ds community needs from you is simple: invite our kids to playgroups, to your child’s birthday party, to a museum, to do anything that you’d do with your typical children.  Studies show that interacting with people with Down syndrome creates a more positive outlook on life, so let’s start including them in others’ lives.  If you notice there aren’t any differently-abled kids in a class at school, ask about it.  Encourage your children to sit with a differently-abled child at lunch or play with them at recess.  And model this behavior yourself, because the more you treat my child like a “normal” kid, the more your children will, too.  

Here is the link I promised.  It is not for the faint of heart, but this is how Down syndrome was viewed and in some ways is still viewed, judging by the abortion rate from those receiving a prenatal diagnosis.  Wesley and others with Ds are not mistakes.  Their lives are worth living. 

Wednesday, October 16, 2013

An Open Letter to Instagram

Dear Instagram,

As you may know, October is Down Syndrome awareness month. This month is in place to help promote acceptance, inclusion, appreciation, and respect for people with Down Syndrome across the U.S.  As you probably also know, many people in the IG community use #downsyndrome to make fun of how they look in pictures or when they're doing something dumb in a picture. Imagine that you are a family member scrolling through pictures tagged #downsyndrome to see other beautiful faces of kids and adults who are experiencing life as you do and then you stumble across some of these hateful and ugly pictures. Clearly #downsyndrome is being used as a joke and an insult. Because, obviously, people with Down Syndrome make stupid faces all the time, do dumb things, and are generally a laughable presence in our society. Oh, that's just the ugly stereotype that is being perpetuated by these ignorant folks. And it's also being perpetuated by Instagram for not taking down these pictures when they are reported as harassment or bullying.

I have tried to engage some of these people to explain why the hashtag #downsyndrome is hurtful in that context. I've had a couple of people respond respectfully that they were wrong and promise to stop using it. Most have been hateful, telling me things like, "There is a cure for Down Syndrome. It's called abortion." As a mother of a beautiful son who has DS, you can probably imagine how devastating a comment like that is.

On behalf of the large Down Syndrome community here on Instagram, I am asking that you look at your harassment/bullying policy and update it to include that pictures with the hashtag #downsyndrome will be removed when reported or, at the very least, the offending comment and hashtag will be removed from the comments on the picture. I have reported multiple pictures and comments and have, disappointingly, seen no action taken by Instagram.

I love your app and I appreciate the community you have provided. Please continue to make this a safe place for all people, regardless of their differences.

Amy Knueppel

Sent from my iPhone

Sunday, September 29, 2013

OK, and if you needed proof that this kid is super cute, here are a couple of pics:

Wesley's Birth Story

It's been a long time coming (15 1/2 months), but here is the story of our little Wesman's birth. 

As many of you know, Vivian was 1 week late when she was born, so imagine my surprise when I awoke on June 13, 2012 at about 5:30 a.m. with some serious pains.  I wasn't due until July 5 and I thought maybe I was having Braxton-Hicks contractions.  I called the after hours line at my doctor's office and the OB on call got back to me.  I told her the amount of time between contractions and she assured me that they were B-H and that I would probably have them for the next 3 weeks.  After hanging up, I told Daniel that if I had contractions like this for 3 weeks, I was going to die.  I finally decided the doctor on call had no idea what she was talking about and that I needed to go in.  We called my Doula and let her know to meet us at the hospital.  By this time, my OB's office was open and I called to let them know we were coming in, too.  Thankfully I had packed my bags a couple of days earlier!  Of course, my parents weren't in town yet, so we had to drop Vivian at my aunt's house.  Thankfully she was home and was able to watch her!  Whew!

We got to the hospital, got checked in and I got settled in my hospital bed.  Thankfully, I made it to the hospital without throwing up this time.  ;)  The nurse came in and checked me and said I was already 5 cm dilated!  I guess it was a good thing I listened to my body and not the on-call doctor!  Of course, I had to go into labor on a day that my OB wasn't in the office.  I was bummed that she wouldn't be delivering this baby, either.  After the checks and the fetal heart monitor being hooked up, I was able to get into the tub in the room to labor.  Aaaaaah.  So, my Doula, my husband and I just sat around by the tub chatting and doing yoga breathing through contractions.

I should mention that the Euro Cup was going on during this time and Germany was playing Netherlands that day.  Daniel was really concerned that he was going to miss the game because of the baby.  ;) 

I got a nice surprise when my OB showed up.  She decided to come in on her day off to deliver Wesley because "she wanted to deliver at least one of my babies."  It made things easier knowing that she was going to be there for the delivery.

After laboring for a couple of hours in the tub, I needed to use the restroom and decided they should check me before I got back into the tub.  This time around, I dried off and got back into a gown before they checked me.  I was 8 cm dilated, so I decided to stay in the bed because the tubs aren't made for giving birth there.  I also started feeling nauseous around this time so they gave me a couple of Tums to settle my stomach.  I asked for a barf bag, too, and good thing because those Tums ended up coming up about 15 minutes later.  So, I was 2 for 2 on puking during labor.  Sweet.

The nurse came in and checked me again and said I was a 9, but that I couldn't push yet because I wasn't fully dilated.  I was talking through all of this, so I guess they thought I wasn't really in transition.  The nurse then left the room.  A couple of minutes later, I looked at Daniel and the Doula and said that I had to push.  There was no stopping it.  My Doula ran out of the room to find my OB and I pushed.  Everyone got back into the room and I knew Wesley was well on his way.  Somehow he got stuck on a nerve, though, so it was so painful to get my left leg up when pushing.  I pushed a couple of times and didn't get anywhere.  I finally adjusted my position and in a couple of more pushes, he was out!  He cried and I got to hold him.  He was beautiful.  He looked just like his sister when she was born and had her little ski-jump nose.  He was 6 lb., 6 oz., 18" long, and made it out at 12:42 p.m. in plenty of time for the Germany game. 

Because I was 36 weeks, 6 days gestation when I went into labor, a NICU team had to be in the room.  They did a preliminary check and checked his Apgar (he got an 8 and a 9) and then gave him back to me to nurse.  He latched on well and did a great job getting some initial colostrum.  We took pictures and snuggled.

After nursing, the NICU team came back in and took Wesley.  A neonatologist came in and said that a nurse had heard a heart murmur and that they needed to check his heart.  She also asked if we noticed that he seemed a little "floppy" and that his eyes slanted up.  We didn't notice either of those things.  She said those were markers for Down syndrome and that they were going to have to draw some blood to test him for Ds.  She wasn't 100% positive that he had it, because he didn't have a lot of the other soft markers, so we'd just have to wait for the bloodwork to come back.

Of course, I was in shock.  My baby had been taken away for testing and I was in a fog.  The Lactation Consultant at the hospital came and showed me how to pump with the hospital pump so that Wesley could get my milk, even while in the NICU.  She said he was jaundiced and that the doctors wanted to supplement him until my milk came in.  She said that our hospital had the option of donated breast milk and I said that I absolutely wanted him to receive the donated milk.  He was the first late-term preemie in the hospital to receive donated breastmilk! 

I went up to see Wesley as soon as I could.  He had an NG tube in his nose and was hooked up to a bunch of monitors.  Since he was jaundiced, they also had bili lights over him for a good part of the day, which meant he got to wear these little foam sunglasses.  I was pumping every three hours and would take my little bits of milk up for him to get through his NG tube.  The nurses were trying to bottle feed him but said he would get choked on the milk.  Finally, I said that I wanted him to nurse before I pumped.  I was only able to breastfeed Vivian for 4 months and I was determined to breastfeed Wesley.

I feel like the NICU was a neverending nightmare.  We would have one doctor come in and say that they thought Wesley had Ds.  And then another would come in and say that he didn't.  I was on a constant emotional roller coaster.  Finally, on Saturday evening, as I was in the NICU room all by myself, a doctor that I'd never seen came in and bluntly said, "We have news.  Wesley has Down syndrome.  Now, this doesn't change anything about him and he's still the same baby as he was when I walked in here."  I was stunned.  I had convinced myself that he didn't have Ds and here I was, all alone, being dealt this HUGE life-changing blow about my child.  I started sobbing.  My NICU nurse was so awesome and hugged me and told me all she knew about Ds and families that she knew with Ds.  I then had to call Daniel and tell him ON THE PHONE about Wesley.  :(  I asked him to come to the hospital as soon as he could.  And then I called my sister.  She's a Child Life Specialist and works with kids with Ds all the time.  She was heartbroken that I received the news without anyone else in the room with me.  But she said, "Aim, I loved him anyway, but I love him 500 times more now that I know he has Down syndrome."  Of course, I didn't understand.  I didn't know anyone with Ds.  I had never been around anyone with Ds.  All I knew of it was Corky from "Life Goes On" and Becky from "Glee."  I received a packet of information about Down syndrome from the hospital and Down Syndrome Indiana.  I couldn't read it, though.  I started researching online because, somehow, it was a little less real when it was on a website v. a book I had received about my child.

There was a nurse named Deb Tibbs who said that she knew some families who had kids with Ds and asked if it was OK to pass along my contact info.  She said they were great people and would be great resources for me.  I told her that was fine.

After the initial shock, I looked at Wesley and thought, "He's still my baby, I love him, and I'm still going to breastfeed him and he is going to do things that people say he can't."  This was mostly directed at the Neonatologists who, as soon as they found out Wesley had Down syndrome, were telling me all the things that he wouldn't or probably wouldn't be able to do. 

I was having a hard time splitting time between Wesley and Vivian.  My little 21-month-old didn't understand why Mama was gone so much and it broke my heart to leave her or Wesley for too long.  I was in tears (again) one day and our very compassionate NICU nurse said I should spend my daytime hours with Vivian and then come back after dinner or once she was in bed and sleep in the hospital and do nighttime feeds and snuggles with Wesley.  She was right.  Both of my kids needed me and I needed to spend time with Vivian when she was up because she knew I was not there.

I continued to pump every three hours (oh, how I loathed the pump) and then wake every three hours in the hospital to feed Wesley and pump after.  Because of his low tone, he could only feed for 20-30 minutes and wouldn't empty my breasts, but he was feeding.  And he was getting stronger and better at getting his fill every day.

Finally, we were told we could be discharged.  Wesley still had to pass his car seat test, but we were hopeful we would finally be out of the NICU.  The day we were supposed to leave, the Neonatologist on duty  said Wesley had a decel the night before and that we couldn't leave that day.  I was furious because I was sleeping at the hospital and no one had said anything to me.  I asked when it had happened and what exactly happened.  Later, the Neonatologist came in and said he couldn't find anything about the decel in the paperwork.  To this day, I'm convinced it didn't happen and that he had Wesley mixed up with someone else. 

The doctor also said we couldn't be discharged without learning how to place an NG tube.  I said that Wesley was breastfeeding and that I was not going home with an NG tube.  The doctor (FOR REAL) looked at me and said, "He has Down syndrome.  He can't breastfeed."  Thank God for my nurse who was there and who said that Wesley was breastfeeding and that he could do it.  She called the Lactation Consultant who came up with her scale and weighed Wesley before breastfeeding.  She watched him latch and watched part of the feed.  Once he was done, she weighed him and he had taken 3 oz. off of one breast.  She went out in the hall and did a dance and said it was a picture-perfect breastfeeding session and that he absolutely was breastfeeding and getting milk.  The Neonatologist came in and said he would discharge us if Wesley passed the car seat test, but that he really didn't want to discharge us without an NG tube because he was certain that Wesley would be back in the NICU or PICU in a few weeks because he really couldn't breastfeed.  (This only made me MORE determined to breastfeed him.  If you want to get me to do something, tell me it can't be done!)  Thankfully, Wesley passed his car seat test and slept through most of it and we were discharged with a portable bili blanket to get his jaundice down.

The following weeks were filled with doctor's appointments and blood tests to make sure his bilirubin levels were going down and that he was gaining weight.  It wasn't easy, but he was home and that was what mattered most to us.

I am so thankful for our NICU nurses and the Lactation Consultants at the hospital.  They were such strong advocates for Wesley and for me.  I don't know if I would have been so confident in my breastfeeding and my abilities as a mom of a child with special needs if it wasn't for these ladies.  I would also like to report that Wesley breastfed for 13 months!  Please don't let any doctor tell you that your child cannot do something just because of a diagnosis.  Your child is a person with unique abilities, not simply their diagnosis.

I wish I could say that I immediately was at peace with the Ds diagnosis.  I wasn't.  I struggled.  I felt guilty because I thought it was my fault because of my age when I had Wesley.  I mourned the life that I thought we (and he) would have.  I was angry that so many of our dreams for him were taken away.  One by one, I went through what I thought would be his future plans and I dismissed each one.  I let go of my dreams that he might be a basketball or soccer star, what his girlfriends would be like, if he'd be popular in school, which college he would go to, who he would marry, how many kids he'd have, etc.  I thought he'd be resigned to living with us for the rest of his life and thought about how we'd care for him.  I wondered if he'd even walk, talk, be able to be part of a "normal" school or have a "normal" life. 

And then something beautiful happened.  I met people who have children with Ds.  These children all have different abilities, but they were sitting, crawling, walking, signing, talking, playing and just being kids.  Their siblings loved them and fought with them as any other siblings would.  Life wasn't easy with extra doctor's appointments, therapies, and health concerns, but their lives were full.  I learned that early intervention was helping greatly with motor skills and speech.  I learned that inclusion is heavily pushed in schools and that our school district does a terrific job with inclusion.  I didn't really understand when people said that the milestones would be sweeter when Wesley hit them, but oh, do I understand that now.  With Vivian, I naturally assumed she would hit her milestones.  And she did.  Most of Wesley's milestones have been hit through therapy and hard work on his part.  Believe me - we yell and clap and happy dance with each milestone that he hits.

It's a stereotype that people with Down syndrome are always happy.  Wesley is not - he gets mad and frustrated like anyone else.  He can cry and make really sad faces with the best of them.  But there's something about him.  People LOVE Wesley.  He brings joy to so many around him.  It might be because of his awesome hair, people do love that about him, but it's something else.  He can make people stop and smile.  I am amazed that even his rough-and-tumble sister has developed a gentle, caring spirit toward her brother.  Well, maybe not when he's stealing her toys, but most of the time.  ;) We are part of an amazing extended family of people all over the world who have been blessed by Down syndrome.  God knew exactly what he was doing when he gave Wesley to us.  I look at Wesley and the wonder he has as he takes in his world and I think this is what it must be like to have child-like faith.             

Obviously we are still in the early stages of this journey compared to others, but I keep coming back to the word "blessed."  Life is a blessing.  Life with Wesley is a blessing.  Seeing my children together is a blessing.  Knowing that we are better people, individually and as a family, because we see the world a bit differently is a blessing. 

I always knew I'd fight for my children, but I know I will have to do so even more now.  I am already fighting stereotypes of what Down syndrome is.  I am already fighting against the R-word or people using "Down syndrome" as a slur or synonym for stupid or dumb.  I hope in Wesley's lifetime that the R-word and Down syndrome used as offensive terms will be eradicated.  I hope that people, through knowing Wesley, will see that Ds is not something to be feared, is not something horrible, and is not a sentence of a life that cannot or should not be lived.  Wesley is thriving, learning, communicating, eating, growing, playing, and loving.  No one can look at him and tell me he has no quality of life.             
I know I blog sporadically and have limited readership on this blog, but if anyone reading this knows of someone who has received a pre- or post-natal diagnosis of Down syndrome, please contact me.  I know there is fear and I know many times medical professionals paint a bleak outcome for someone who has Down syndrome, even in 2013.  Please let me tell you my side of the story.  Please let me walk you through my pictures and the pictures of many others who are touched by Ds.  Let us come alongside you and tell you of the countless blessings that those doctors haven't experienced.  Let us tell you how our babies defied the textbooks and the "odds."  Let us help you see beyond the diagnosis and into the people who have Down syndrome and all the things that they CAN accomplish, especially with family support.

This verse makes me think of my Wesley: "Blessed are the pure in heart, for they shall see God." Matthew 5:8  I know he's helping others to see God, too.

I love you, little man.  I'm sorry that I didn't understand how much I would when we first heard the words "Down syndrome."  You are a gift.  Love always - Mama

Monday, March 18, 2013

Two families need our help!

I know it's been a while since I've blogged - 2 kids under 2 will do that to you.  But I wanted to spread the word about a cause that is close to our hearts.  Two families are trying to adopt kiddos with Down Syndrome from overseas and need our help.  Kids with disabilities are less likely to be adopted, especially internationally.  And these kids age out of the orphanages over there and are then institutionalized, where they have no hope of love or a normal life.  It breaks my heart.  These two families want to bring these precious babies home and show them how much love can change their lives.  If you're so inclined, here is the link to donate: