Haunting Numbers

9 more days.

I'm not a gloom and doom sort of person. Perhaps I used to be before I landed in the the lap of Jesus. He doesn't teach negativity or fear or failure. He doesn't teach anxiety or stress. He teaches that even in trials and trouble, there is joy.

Until the day after Shawn was born, we had no idea that he had Down syndrome. This was God being extra thoughtful. He knows how I have a tendency to worry, toss scenerios around in my head, play the "what if" game, and he knows how I lose sleep. For the first 14 hours that I held my son, he was a perfect specimen with all the hope in the world for a bright future. He would compete and play with his brother, Asher. They would be similar but different. They would grow strong and smart. They would follow their dreams and passions. They would be educated, have careers, marry sweet girls, and give me lots of grandbabies.

Day 2, age 14 hours, we learned Shawn's future would be different. He would need therapies by a host of professionals. He might have severe heart problems. He might have eating and digestive problems. He may or may not walk. He may or may not talk. He may or may not ever be able to go to the bathroom independently. He would most likely never go to school beyond 12th grade, and the liklihood of him getting married is slim. He will never be a father. He may have a job, but not a career, and he will never support himself. Shawn is still a perfect specimen, a prize, a joy, a thrill, a gift, and a blessing......just all wrapped up in an enexpected package.

Of all of the things in the list from Day 2, the only one that crushed me was, "he might have severe heart problems". To me, a heart defect could mean death. I told the doctors several times.....I'm not sure they believed me.... "all i care about is his heart....we have to make sure his heart is okay and if it is not we have to fix it!" I couldn't stand the looming possibility that we could lose this child. I still can't. Everything else.....I can handle.

The first review of his heart revealed nothing for us to be concerned about. There was but a tiny hole that should close on its own, and is very common. Year 1....I didn't worry. The beginning of year 2 revealed the hole is still there, and relatively significant in size. Year 2 would involve multipe EKG's and Echo's only to reveal time after time, the hole is not closing on its own. Surgery is necessary.

Of the heart conditions that are consistently present in children with Ds, this one is the least severe. It's just a little hole right....? The surgeons do this all the time. They can open him up and close the hole with their eyes closed, practically. It is one of the finest children's hospitals anywhere...they specialize in operating on babies his size......sure.....so the anestesia will go well. It will be unremarkable....pracitally a non-event. Mommy, Daddy, some other family and GOD GIVEN friends will be sitting a few feet away in a waiting area, just praying that nothing freakish happens. Shawn won't have an allergy to the medications....nothing foreign will fall into his chest cavity, the surgeon will not have had a fight with her spouse that morning, the surgical assistants will have had plenty of coffee, and in a perfect ideal situation, they all will have prayed for God to show up in their handiwork on this day.

I have known whis was coming for a year. I have been strong and had great faith and have not shed a tear. Since Friday, I've shed an ocean of tears, and not predicting the waves will receed. I need to get past this, through this, over this, and beyond it. It is very difficult. Because I know that God is not obligated to put a shield of protection around my son and our family. I have been devastated many times and grown from the pain. This is just one of those times that I'd rather pass on the devastation, Lord, and can we let this one go just exactly as I pray for it to?

9 days, then 8, 7, 6, 5, 4, 3, 2, 1......it is mental torture.

If you think about us, please pray for the unremarkable, non-event, piece of cake surgery, and a speedy recovery. And if you could pray for my mind to be flooded with peace in these days leading up to the surgery....I'd be so grateful. Prayer works.

Ds in the DR

This is Maria. She lives in the Dominican Republic, and has Down syndrome, (Ds). She is 16. As soon as I spotted her out of the 50-60 kids that came to play with us the first Saturday we were there, I couldn't take my eyes off of her. Every person with Down syndrome is a learning and heartwarming experience for me. Maria was no different. We couldn't speak the same language, but we played peek-a-boo and hide & seek. She was very flirty with me. Maybe I gave her far more attention than she is used to.

This is the community she lives in, referred to as "The Hole". Poverty, drugs, HIV/Aids, and sex are the norm in her neighborhood. Saying goodbye to her was hard on my heart. In the Dominican Republic, there is no Federal Early Intervention, speech therapy, occupational therapy, physical therapy, and Susan Gray school. There are no food stamps, WIC, or unemployment compensation. It is a different world, to say the least.

Notice the garbage in her community and the hand constructed dwellings.

This is home.

Dear Mr. President

Dear President Obama,

I couldn't stay awake last night to watch your TV appearance on Leno, even though I wanted to. I am exhausted to the point of illness for the following reasons:

~ I have spent 38 hours this week showing houses in an economy where I am fully aware that my efforts may never turn into a paycheck.
~ I spent 8 days before that learning to appreciate my country more while I was serving in a 3rd world country to help build a concrete block church so that Haitian refugees can worship God, and playing with kids who do not have toys.
~ I am 11 days from taking my own 2-year-old son with Down syndrome to a hospital to have open-heart surgery to repair a defect that is common among children born with Ds. This surgical repair will make it possible for Shawn not only to live, but to be competitive and active without overworking his heart and becoming easily fatigued.

Mr. President, it is sad that you likened your bowling game to something beneath yourself, such as a "less-than-perfect" individual with physical and/or mental needs trying to be competitive in a sport. The saddest part is that you and others who make such minimalizing comments against some of our world's most incredible and precious people, influences others to think they can do the same, and that it is without pain to the people who are affected. The person with physical and/or mental challenges competing in the S.O. has such drive, determination, hope, joy, spirit, respect, courage, and love. The man with Down syndrome who bowls 3 perfect games in a row, has overcome far more to perfect that ability than any pro competitor earning a gross salary. The Special Olympics track competitor who comes in last has more respect and grace toward his/her winning competitor than anyone competing in the super-human games. The young people training and competing in the Special Olympics are not secretly enhancing their performance by using steriods to cross the finish line, or celebrating with marajuana after signing millions of dollars of endorcement deals. And finally....they don't care. They just want to belong. They want to have fun. They want to be loved, praised, accepted, celebrated, honored, and respected. You know what Barack, their goals are no different than yours, but their hearts are in the right place....even if a surgical repair is required to keep it beating.

Mr. President, my son did not hear what you said. He is 2 years old and he was asleep. But I heard what you said. I watched it back today online. I know you didn't mean to stick your foot in your mouth and you didn't mean to criticize an entire sect of our population. I know that you didn't mean to knock your popularity ratings down a notch and that you didn't desire to offend a single person. I know that you didn't use the word "retarded" and I know that all you really meant to do was to be humble about the fact that your bowling game has room for improvement. Your intention was to show humility and maybe even bring a light-heartedness to your message where the challenges you face as President, and the challenges we are facing today as over-spent, over-extended Americans, could use a little light-heartedness. But you should have known better than to ever make light of a person with special needs. You offended every mother, father, brother, sister, special education teacher, cousin, neighbor, friend, church member, and every other advocate for people with special needs.

I am a mother of 3 incredible boys. But my youngest son with Down syndrome, Shawn...HE will need me FOREVER and I cannot guarantee that I will be here as long as he is here. He may never have the opportunity to earn a living with a respectable salary. He will never be Michael Phelps or Carl Lewis or President of the United States. He may never be televised and celebrated. But his leaking heart is FULL of love and acceptance. His eyes see no discrepancies in a single other human being on this planet. His lips will speak simple and tender truth, because he may never have the capacity to manipulate or lie. His little legs will run the race that is set out for him, even though you might always be able to run faster. And as his mommy, I will run beside him, or behind him, or I will even carry him across the finish line because his joy and the joy of my other children, is my number one priority for their lives, along with teaching them to absolutely love the God that created them, in His perfect image.

You have already apologized. But you did more than offend. You have shown me that you may not be as sensitive as I thought you were. You may be not as intelligent as I thought you were. And you may not be as trustworthy as I thought you were. You didn't just make a regretable remark, you revealed something about your true character. Good luck with that in 2012.

Sincerely,

Melissa Irwin
Mother of Future Special Olympic Competitor
Nashville, TN

Happy Birthday Shawn

Our day was so good. I woke up this morning at 6am to Shawn sorta screaming...okay...that part is not so good....BUT.....he was healed of whatever was wrong the second I lifted him out of bed and started singing happy birthday to him. He is 2 today. I brought him downstairs to bed with me and Joe....as Joe got to actually be OFF work today....YAY!!!!!! Soon, Asher was up and bouncing around....so soon we were all up. I made chocolate chip pancakes for breakfast...(did I mention Spencer is here.....yay....all 3 of my boys!). We took a trip to the Opryland area to see the Grinch Ice Exhibit (fun and free since Joe is an employee of the resort)...... then came home for kiddos to nap....(I snuck off for a horse ride)....then back home for an early little party with just the family. Shawn completely enjoyed discovering his new toys and he totally rocked the cupcake. Shawn has never consumed that much sugar in his life...and here he did it in one setting. Watch him devour the end of this cupcake....Asher sings him a song...and Shawn gets excited. It's a decent 2 minutes and 17 seconds worth of free entertainment. HAPPY NEW YEAR!!!!!!!

Another Tasty Milestone

Ok......so my Shawn is incredibly independent. He is most definitely a "doer" and "mover", in Down syndrome terms. But one area where Shawn has really showed no desire is to give himself a bottle, or to learn to drink from a sippy cup. In fact, Shawn is 22 months old, and we still give him every bottle....and he does not assist. Obviously, we have to do this because he also will not drink from a sippy cup....and the boy has got to drink.

Finally, yesterday.......with a cup that does not frustrate him.......he has embraced the sippy cup....and is now enjoying sweet yummy apple juice.....independently. I'm not sure he'll be as excited about it with milk or pediasure.....but....baby steps.

It's sooooooooooooo cute. WATCH.

Video of Asher and Shawn playing

Asher and Shawn take time every day to enjoy some pretty vigorous brotherly play. Shawn loves to climb on Asher and really, just be near him. It is so fun to watch. The other day, Shawn was cracking up at Asher. By the time I found the flip camera to catch this video...the cracking up had stopped....but the play was still fun. Enjoy.

Shawn learning how to do sign for "stop"

Shawn has been learning more sign language. In this video he demonstrates the sign for "stop". Usually he does it a little better than this....but this is so cute anyway! Watch this cutie pie. Oh, and also you can hear him try and say the word "stop". He is really doing well with his vocalization and just in attempting to mimic sounds. FYI, he's in speech therapy once a week, pretty intensely, but it is fun and extremely helpful. We're so proud of him, and enjoy him so much. What a joy and a gift we have in all our boys!

Shawn is learning Sign Language

As mentioned in a previous post, Shawn has been learning the sign language for the word "more". It's a great starting point. Shawn just started going to speach therapy once a week, and sign language is practiced in the classroom as needed. So, in this video, you will see Shawn do the sign for "more" at least twice. We were in the kitchen last night playing with a toy that he loves, a spinning toy. When it stops, he began signing "more" without being prompted. It is such a blessing that his mind is making the proper connections. We think more signs are on the way, and we'll continue to show you his progress. Oh, and FYI....Shawn is almost 21 months old and does not speak. He is loud and vocal (trust me on this), but no clear words.

OK, so the sign for more requires both hands. If you bunch up your fingers and thumb on each hand, and tap them together, you get "more"......here, Shawn will show you. Enjoy.

Shawn's First Day at Pre-School

**Update** Please notice that below is a VIDEO of Shawn, not just a lonely looking photo. My sweet pastor told me at church tonight that he didn't realize it was a video. And I thought he was soooooooo high tech. I guess he didn't notice the arrow, a universal symbol for "play". Go ahead, give it a go. And Pete, when you rewatch the video that you once thought was a photo, don't forget to add a new comment telling me how precious Shawn is! I laugh.***

In just one week of pre-school, Asher's manners have improved as well as his identification of the letters of the alphabet. He absolutely LOVES his 1/2 days at school. He hasn't quite fallen in love with the lunch menu.... His classroom is called "Polar Pals"

Shawn has loved his classroom too. His room is called "Busy Bees". What I love about this school is that each classroom has children with special needs right alongside children without. The teachers are amazing...and that is an understatment. Here is a video of Shawn on his first day. I picked him up at noon and he was in the middle of lunch. Look at him sitting in this tiny chair at a tiny table. And with a PLATE! Normally, I feed him in a high-chair with his food directly on the tray.

Everyday, Asher says "Mommy I hope Shawn has a great day in Busy Bees". He also expresses his thoughts of his baby brother to his teacher, Miss Ashley. You can see here that Shawn does indeed enjoy his days with the other busy bees.

Mischevious Laughter

There is this particular laughter that comes out of Asher. I'd recognize it anywhere. It is the specific laugh that indicates Shawn is doing something bad and Asher is enjoying watching the process....almost as much as if the bad behavior was his own....only better, because Asher will not get into trouble for something clearly carried out by his angelic baby bro.

It is a telling laugh, and it makes me nervous. Has Shawn eaten the dogfood again? Has he taken a hefty bite out of the antique china cabinet? Recently, with all of his talented walking skills, Shawn has begun to reach for and grasp a beverage, take off on a smooth trot (not) and demonstratively spill a trail of evidence for as far as the eye can see.

I'll admit, I've seen him in action from a distance, and it is quite hysterical, until I have to clean it up.

Can I tell you that it is a gift beyond measure to see him walk? Could I stress to you that I can see in my small child, that his brain connects to the all knowing fact he is doing something wrong...and to see him know he is doing something bad is better than not. It thrills me to no end that his little hands need a spanking sometimes. It kills me (in a good way) that he has a strong will and a determination beyond what I thought he might have, not knowing anything about Down syndrome at his birth. I did not know who he would be. This kid is so normal! He's wild and energetic. He loves to have books read to him, to dance and to sing songs. He loves food (amen)........ and the monkey loves to sneak off with mommy's cold iced tea (southern style).

Here is a video of Shawn walking. I tried to get the older video clip to go first, but the newer one starts off. He really is doing a great job of walking! Enjoy this very short video.

super fast itsy bitsy spider

I've been trying to capture some itsy bitsy spider action for a while. As with most experiences in life....once we get used to something, we tend to rush through it. Shawn no longer pays much, if any, attention to the detail.....so here is his lightening fast (and I mean don't blink or you might miss it) version of the ever popular classic, Itsy Bitsy Spider. Oh, and yes....he is sitting in a box. It's our family room toy box....which he likes to sit in.

In other Shawn news....the heart surgery has been put off until spring, because Shawn is too small and needs to fatten up and grow a bit. It will most likely be open heart surgery, verses the simpler procedure...but it will be the best choice for him.

Love to everyone.

Could you encourage my friend?

When I was pregnant with my children, I never opted for the screenings and tests to determine if there might be any abnormalities. Shawn was born with Down syndrome, and we didn't know until he was 1 day old. Never saw it coming! Not in a million years! Devastation and fear socked me in the gut and between the eyes.

Ironically, a friend of mine who lives several states away, was pregnant with her second child. Some concerns were noted during her ultrasounds, and so she opted for the testing, and it was determined that her child, a boy, had Trisomy 21 (aka Down syndrome). She knew his diagnosis when she was just barely 4 months pregnant. She was devastated. It is a long story to describe what they went through. I will try to tell you in the words she used to tell me................... she just didn't think she could do it. Her heart ached. We spent countless hours on the phone for weeks and months trying to work through their choices, and their ultimate choice.

Let me tell you what she didn't do. She did not have an abortion, even though she could have, and many women do. In fact, 95% of women who receive an in utero diagnosis of a baby with Ds, do abort. 95%. My friend, who loves Jesus and who loved that baby, contemplated but chose against abortion. She deeply wanted to WANT her son, but she was so afraid of him. Afraid of the life, the challenges, the fear of loss, the fear of her inadequacy. She thought she wasn't good enough. She and her husband painfully and laborously sought out an adoption family. I cannot even begin to describe the drama that ensued. Their families went nuts....they were outcast, attacked, lashed out against.....it was awful! The things she endured would have literally killed me. And then there was me........I was now the mother of a beautiful bundle with Ds, and I was encouraging my friend and supporting her in her unpopular decision. She couldn't believe, of all people, that I was the one accepting her. It didn't make sense, and maybe it doesn't make sense, but I just love her. And I love that baby that I never met.

Soon, Luke was born. He was premature, small and required to be in the NICU for 5 weeks. He had heart problems, medications, and on and on. My friend and her husband actually brought him home for a few weeks. They tried with all their hearts and for whatever reason, the task was too daunting, too painful, and just too much. They ached and prayed and begged and prayed and grieved and prayed and prayed and prayed. They suffered and were tormented. They gave Luke up for adoption. They personally chose a family that already had a few children with Ds, in the midwest. A large happy, loving, sweet and tender family who longed for another sweet baby with Down syndrome.

Luke is 1 year and 3 months now. His birth mother, my dear friend, is grieving and mourning today as if her wound is fresh, the cut is deep, and the infection has spread. She hurts. She hurts because she thinks she wasn't strong enough. She hurts because she wonders what kind of person she is for giving him away. Could you leave her words of love here? Could you tell her that she is amazing because she did not abort him, when that might have been the easier route that might have saved her reputation and spared her extended family? Could you encourage her and love her because she tried. Could you praise her and show her grace and love because she took the time to seek out a very tender and special family, instead of letting an agency take all of the reponsibility? Could you remind her that God has used her as part of His plan and that Luke is fulfilling a plan and purpose too? Could you lift her up and tell her how amazingly selfless she was for blessing another family with a sweet miracle from God?

She needs to know that I am not the only one who thinks she is sooooooooo cool and incredibly amazing!!! She does not read my blog. I will take your comments and email them to her separately. I purposely have not shared my blog with her because I do not want to rub my little Ds angel in her face. It would hurt her in this fragile state she is in.

Adoption is a beautiful, incredible and selfless decision, on both parts. So many people cannot have children, but long to be parents. Some people have the heart to rescue a child or children who have been abondoned or abused. Some people, like this family, specifically wanted another child with Ds because they have hearts for the Lord, and God himself, desgined them to LOVE, desire and long for another. Without my friend, their dream might never have been fulfilled.

Your comments will be cherished!

16 Months

Shawn is 16 months old (yesterday). Today, he had a hearing screen at the Bill Wilkerson Center at Vanderbilt. The hearing screening is a requirement for speech therapy. It is not uncommon for children with Down syndrome to have hearing loss. I learned today about the positioning of the interal pathways of ear canals, and learned also a little about ear drums. I will forget it all by tomorrow....but here is what I know. Children in general have a tendency to get a lot of ear infections, partly because the positioning of these "paths" is more horizontal than vertical and allows fluid to build up. As chilren grow, the horizontal position becomes more vertical, thus better drainage. With Down syndrome, the horizontal position remains horizontal. Shawn has only had 1 ear infection. His hearing is very very good, but it seems there is fluid holding and he most likely will have to have tubes in the near future. Fluid makes hearing at low frequencies rather difficult. The Dr. said he is hearing well, but that the sounds may resemble what it would sound like if you were hearing noises from under water. Until his hearing is at its best....learning to talk may be difficult.....and this makes sense. We'll go to the pediatrician soon to get his opinion, and we'll go from there. As most parents know....tubes are minor...and life goes on. I'm thankful that this may be the worst case scenerio..... (more blessings).

I love to take Shawn out into the public. Everyone smiles when they seem him and give him tons of attention. He is a cute little bugger. We always take him to church, and I usually take him to Sams or to the grocery.....but until he gets accepted into one of the pre-schools (long waiting lists), then he spends the majority of time at home. I work from home. Joe gets 2 days off during the week. One of the grandma's usually comes over one day a week to keep the boys, and we have a wonderful babysitter that comes on weekends when I need her so that I may work. Shawn is home... A LOT! He really seems to love the excitement of new places. I'll be so happy when he can go to pre-school. There are 2 schools here that take a blended mixture of children with special needs and typically developing kids. Asher and Shawn are both on the waiting list for both schools. We're praying for admission by the fall. At that time, all of Shawns therapists from Vanderbilt will go to his school to treat him and do his therapies. That will be so nice for mommy and for Shawn. Asher too, is beyond ready for such an environment. I feel we have held him back a bit because we have been waiting for something so specific....but I also feel that Asher is such a healthy boy, with advanced everything....and having him home with Shawn has been the greatest gift to both of them. They are my sweet boys.

Tasty Milestones

This is such a sweet picture to me. Shawn is sitting in our living room floor with Hye-Lee, a therapist who comes to our house weekly to work with Shawn on physical and occupational (fine motor) modalities. In this photo, he is holding a tiny ball with suction cups, and he managed to pull it off of a base. This exercise helps him develop strength in his hands, wrists, and arms. You can see he is enjoying it. He also goes to Vanderbilt Pediatric Rehab twice a month for similar therapies. But this week we accomplished something remarkable...

Shawn is 15 1/2 months, and has only 2 tiny little bottom teeth. He still eats baby food from a jar, and drinks 2 bottles a day....no sippie cup yet. We have given him crackers and other soft, dissolvable foods, because at this point, with no chompers...I'm afraid he will choke. I've taken a couple of chances here and there, and when he chokes, I just tell myself.....this can wait. Eating solid foods can wait. The family went out for Mexican food this week. We fed sweet Shawn before we went so he would not be hungry. Sweet fella just looked like he wanted what we were having....so I took a chance. I chopped up my grilled chicken into fine little bites, and Shawn ate every bite. He then shared some of Ashers hamburger. The boy ate like a champ.

For even a typically developing child, this is something to celebrate. For a child with Down syndrome, this is not an easy accomplishment. An enlarged tongue gets in the way and pushes food out involuntarily. And without teeth...chewing is, well....very complicated to say the least. But now Shawn is eating banana, cheese and hot dog. And he loves every morsel. We have received this as a gift and blessing, and thank God for giving Shawn the gift of "pigging out!"

Down syndrome has only enriched our lives.... I sincerely pray that every new mom or expectant family who has received the in vitro diagnosis of Down syndrome will not be afraid. Joy awaits.