Learning from Bear

Just Rambling

2011-05-14T17:18:00.001-07:00

Dan decided to pull one on me today and started playing Bear's 1 year video that we made for his 1 year bday. As I watched I couldn't believe how quickly I was transported to so many places and feelings that I had left behind. Sooo many of them were happy, happy moments and memories, but I couldn't help but be haunted by some of those old feelings of fear, failure, and guilt. I was torn up for quite some time after watching it...like I tell Bear, that boy has wrecked his mama's heart forever. You can watch here, though I'm sure you won't be as torn up as this mama was. :)

http://www.youtube.com/watch?v=6FbftCMbx_c

Care Bears Buddy Walk 2011

2011-04-25T21:22:00.000-07:00

I thought I'd share some pics from last year's Buddy Walk.
Just the 4 of us

Is Bear not the most beautiful boy ever?

My nephew, carrying our sign

The Care Bears, 2010

12 days. Most of us can't remember what we were doing 12 days ago and would agree that 12 days goes by so fast. Not for me. As a first time mom, 12 days seemed like an eternity. 12 days of waiting. Wondering. And finally, when I took my beautiful newborn baby to his first doctor's appointment 12 days after his birth, I received the scariest news *I thought* possible. "Bear's tests came back positive. He has Trisomy 21 (Down syndrome)."

I cried. For days. Weeks. Months. And still do occasionally. But most of the time, those tears well up from a full, full heart. This boy has stolen my heart, and he exudes love and joy. His hugs melt into me. My arms were made to hold him. Daily, I tell him to never outgrow my arms. Daily, I remind him that he is my most favorite little guy in the whole wide world.

And today, I do this for him. Because he doesn't have a fighting bone in his body, today I walk for him, to fight for him, to ensure a bright future for him. The Buddy Walk is THE major fundraiser for Down Syndrome Indiana, the organization that first reached out to us as new parents of a child with Down syndrome. The organization that advocates for the rights of individuals with Down syndrome in their schools, workplaces, and communities. The organization that provides a vision of hope and a bright future for my son.

So will you walk with me? Sure, I know many of you won't be here physically, but will you walk with me by supporting Bear's team? Will you help us claim a place for Bear amongst his typical peers in the classroom, on sports teams, and eventually in the workplace?

Simply visit our First Giving page to support our team. http://www.firstgiving.com/fundraiser/carebears11/BuddyWalkDonating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

I cannot thank you enough for your support--and don't forget to share this with anyone who you think might want to donate too!

The walk takes place along the canal in Indy.
Thousands of people were there last year,
and the canal was swarming with people on both sides.
My Mom and sister with a sleepy Bear

And They Say Kids Can Be So Cruel

2011-04-17T17:11:00.000-07:00

Tonight I stopped at Dairy Queen with the kids. We were finishing our meals as an older lady and her adult son walked in. Immediately, it was apparent that something was "wrong" with him, and upon further observation, I could tell he had Down syndrome and severe disabilities as a result of it. He had little self control and his speech was unintelligible, but he was beautiful. He was oblivious of the stares from those around him and was simply happy to get his ice cream.

Not a minute later, a beautiful blond teenage girl and her mother walked into the restaurant, and got in line behind this gentleman. Hearing him speak, the girl couldn't contain her laughter and immediately headed for a booth to laugh at this guy. I was appalled. But I never would have imagined what was to follow. I fully expected her mother to come over and rebuke her for being insensitive, ignorant, immature, mean. But no. Her mother turned and laughed with her! I was beyond appalled. I was FURIOUS. The righteous anger of a mother welled up in me. How dare a MOTHER teach her daughter to be so cruel?

Thank goodness we were through with our meal (I had lost my appetite). I cleared the table and headed for the door. Being the middle child/peacekeeper/people-pleaser that I am, I had no intention of doing anything other than getting out of there. But something stirred in me, and I stopped as I came to their booth and said (politely), "Excuse me, but are you making fun of that gentleman up there?"

The girl froze, guilt written all over her face, and replied, "No."

"Oh, ok, I just wanted to make sure because I'm pretty sure he has Down syndrome, and so does my son, so I just wanted to make sure you weren't because that's so not cool."

And I walked out! Proud of myself. Shaking. Angry. Sad.

ADULTS!!! Grow up! Learn that different is ok. Don't excuse yourself for being ignorant. Choose to interact with people who are different than you. They don't have to have special needs in order to challenge yourself to get out of your bubble and grow. You teach your child so much more by the way you treat people than by the things you say. Imagine what a teachable moment that could have been for that teenage daughter if her mother had taught her about compassion, kindness, and sensitivity rather than immaturity, ignorance, and cruelty.

We cannot point fingers at our children and say, "Kids can be so cruel," if we ourselves are setting no better example. What slurs do you use in front of your children without even realizing it? Ever call someone or something retarded? Stupid? Dumb? Gay? We as adults must first live out kindness before we can ever expect our children to do the same.

A Boy Named Josh

2011-04-14T18:12:00.001-07:00

We went to the zoo today, Dan, the kids, and me. Dan and I were nearly giddy at the thought of sharing with the kids giraffes, lions, and elephants. And our intuition was right. The kids LOVED everything they saw--lemurs, warthogs, porcupines...everything. But we had no idea what was waiting for us in the dolphin exhibit.

As we walked in, there was a young man sitting in one of the observatory windows, sitting along with a young woman. Immediately, we noticed his beautiful almond-shaped eyes, but even more so, his huge welcoming smile and greeting. Josh has Down syndrome. We started talking with the couple, and though Josh's words were difficult to understand, this mama's heart was taking in every word. Thoughts like, "He can talk. He's independent. He's healthy. He's LOVING," ran through my mind. Josh is magnetic. For fifteen minutes we listened to him talk about the dolphins and his hope to wear a wet suit and possibly swim with them.

And as if he didn't already have my heart, I knelt down with Bear and Lila (who were crawling all over the window seat and Josh) to have Josh look me square in the face and say, "You're really fine and lovely." I couldn't respond with words...only a hug was appropriate, and in that hug, I was suddenly thrust forward twenty years and realized that my little boy will never outgrow his mama's arms. Josh can hug. It's not one of those, "Well, it was nice seeing you" kind of hugs. Just like Bear, he melts into your arms and doesn't let go.

If you're a close friend of mine, you know that I often joke while hugging you and say, "Don't ever be the first to let go of a hug," thus making you hug me as long as I want to hold you. You can say so much through a hug, and Bear, who doesn't speak yet, has communicated more clearly through his hugs than many of us ever do with our words. Josh reminded me of that today.

We said our good byes and eventually left the dolphin exhibit. Throughout the day, we spotted Josh in different areas of the zoo, always, always bringing joy to the people he was interacting with. I couldn't help but think of my prayer for Bear while I was still carrying him as an unborn baby...that he would bring love and joy to everyone he ever meets.

4:00 came and the zoo was closing, so we sat outside the gate and had a snack with the kids before heading home. As we exited, I spotted Josh in the gift shop, dancing with his friend. I smiled. I couldn't help but look for him while we enjoyed our snack with the kids. And then he came.

And he hugged me. And wouldn't. let. go. Josh held me for ten minutes while we talked with Kirby, his friend and now home-health assistant. He whispered that he loved me and would miss me. And patted my back. And got misty-eyed when I did the same. Our hearts spoke to each other as mine told his of the hurt it's experienced due to Bear's diagnosis, and his told mine, "Look at how great it is." Mine told him how much it needed to meet him today, and his told mine, "It will be ok."

I thought I was going to the zoo today to show my kids the elephants. Thank goodness it was to meet Josh.

Love Unconditional

2010-06-01T08:05:00.000-07:00

Lila Alta joined our family April 19, 2010 at 1:20 P.M. Unbelievably, she's as good of a baby as her big brother and is already all smiles and coos during her awake times. Big brother Bear has amazed me because everyone always talks about sibling rivalry and jealousy. Instead, this boy is nothing but LOVE. He wants nothing more than to touch and kiss his "sissy" as soon as he sees her. I swear that he was playing his own rendition of peek-a-boo with her the other day and even earned a smile from her in doing so.

I pray for their relationship to be so amazing. I know that he will love her so fiercly and I pray that she is the most compassionate, kind, and patient sister. But at the same time I want her to be a little firecracker who stands up for her big brother and is his champion and protector. Here are a few photos for your enjoyment.

Something to Make You Smile

2010-04-08T12:45:00.001-07:00

My heart...My love...

Where Does Time Go?

2010-03-17T08:42:00.000-07:00

Wow, it's been way too long since I've written. So much has happened in the last several months. I'm now 6 weeks away from DD (due date) with baby #2, and Bear has no idea how much life is going to change (actually, I don't think Mommy and Daddy do either). I've also started a business--Twysted Yarn--inspired by this little one I'm carrying. I'm crocheting and selling hats of all kinds.

But enough about that...what I'm learning from my little boy. I'm learning how to laugh harder than I thought possible. I can't believe what a ham he is. He picks up on everything and imitates all that we do: facial expressions, sounds, gestures. We laugh so hard and have so much joy in our home from our little man. Some of our favorite "tricks" are hippies (where he literally lays on the floor and does pelvic thrusts), chomps (where he stretches his mouth out real tight and chomps up and down), shake your booty (self explanatory), so big, "Where's Baby?" (where he pats, rubs, and kisses my belly), and so much more. Of course, he still sticks out his tongue and spits when he's being goofy or wants to get someone's attentiong (mainly Grandpa's since he knows how ornery grandpa is) and shakes his head like crazy to dance to music.

And all of that without crawling or walking or talking or reaching many of those developmental milestones that everyone expects him to achieve at this age. But really? How cute/fun are those things when he does all these others (and more) that I've listed? Milestones schmilestones. He'll get there in his own time and in his own way, no doubt entertaining us and making us laugh all the while.

What I've Learned in 2009

2010-01-03T18:38:00.000-08:00

Happy New Year! I don't tend to make New Year's resolutions or get all sappy or reflective at the start of a new year. Instead I just try to live life fully every day so that I don't get to the end of a year and have regrets. In doing this, I've learned some pretty valuable things this year. Such as:
1. That family trumps all
2. That friends who value the same things as me are worth their weight in gold
3. How to fall more in love with my husband every day in light of him being an amazing father
4. That perfection is overrated
5. That all things happen in their own time; patience is a virtue
6. That being licked (kissed) all over the face by my child brings me joy
7. That health is far too often taken for granted
8. That good neighbors are irreplaceable
9. That people who are different deserve my respect
10. That my house can be messy and remain that way
11. That taking time out of my day for a phone call with someone is more important than my schedule
12. That my mom is an amazing woman
13. That tears at any time for any reason are ok
14. That tenderness, compassion, and kindness are the things we should value and praise in our children rather than their accomplishments
15. That the joy of the Lord cannot be replaced by any earthly thing

Quad Screen, Take 2

2009-11-25T07:17:00.000-08:00

Today is the day before Thanksgiving. And I would be a selfish fool to think I have little to be thankful and grateful for. I'm 18 weeks pregnant with baby number two, and though the pregnancy was a bit of a surprise, we always wanted to have kids close in age, so we're ecstatic. However, as a mother of a child with Down syndrome, my risks for having another child with Down syndrome dramatically increase to 1 in 100 vs. the 1 in 800-something during my first pregnancy. So of course, it's been hard to breathe easily during these first 18 weeks as I awaited the Quad screen that reveals if there are increased levels indicating Down syndrome or other chromosomal abnormalities.

We had the Quad screen done last Monday, and I thought that surely the results would have been in by now, so I called my nurse to find out and she was able to reveal that everything on the screen was negative, meaning I'm carrying a baby with 46 chromosomes. I don't know why I was so happy to receive the news. In fact, when I got off the phone with my nurse and called Dan to tell him, I started crying because I felt guilty and ashamed for being so relieved, mainly because I wouldn't change Bear for anything.

So as I said, today is the day before Thanksgiving. I have much to be thankful for: a child with 47 chromosomes who is the most perfect gift, a child on the way with 46 chromosomes who will be a compassionate and courageous individual who fiercely loves and protects his/her big brother, and a husband who is the glue that holds us all together.

My Dearest Baby,

2009-11-12T18:53:00.001-08:00

One year ago today, the most wonderful gift came into my life. You. Upon my first glance at you, I immediately felt my heart expand, and never could I have fathomed that it could hold so much love; I should have known then that you would continue to blow all expectations I could hold for myself or for you.

Twelve days after you were born, I received the scariest news I had ever heard: you had Down syndrome. I tried to be strong, to keep it together, but I couldn't hold back the flood of tears. I didn't know what all that meant. All I could think of was how you wouldn't be the child I had hoped for. I was so wrong.

Today, twelve months after that diagnosis, I find that I am the most blessed woman on this earth. There are no words to express the incredible love I feel for you or the joy that you bring to my life. You are the most joyful, pleasant baby I have ever laid eyes on. Your sweet spirit exudes from every part of you. Your eyes say it all--how much you love me, how happy you are, how much you want to bring that happiness to others. I cannot wait for the day that you can express that love and joy in words. Long before you were born or before I knew you had Down syndrome I prayed for a few specific things, one being that you would bring love and joy to this world, and the other being that you and your Daddy would be best friends. You are a constant reminder of God's faithfulness to answer prayers. Everyone who knows you is already so full of that love, and God answers my prayers over every day when new people learn that love.

My sweet, sweet baby love. Thank you for being the baby I never knew I needed, for changing your mama's heart and expectations. For bringing me the greatest love I've ever known. For teaching your Daddy and me to dream bigger dreams. Forgive me for thinking any differently, for being scared, for being ignorant. You are my baby of whom I am proud. You are my love. You are my life.

Love,
Mama

So Much Fun

2009-10-28T07:18:00.000-07:00

So nothing deep this time, but I just want to record some things that I love and enjoy about my little boy. I can't begin to describe how much fun it is to be Bear's mom. He's doing the silliest things now--from shaking his head back and forth all the time, to waving hi and bye, to sticking out his tongue and spitting at things...all so fun. I find that I spend most of my day smiling and laughing at him. I thought parenting was supposed to be hard; on the contrary, this is the best job I've ever had.

The other thing I'm reminded of here recently is how grateful I am for his health. I just remember when we first received his diagnosis that I was reading Babies with Down Syndrome which has an entire chapter devoted to health concerns/issues for individuals w/ Down syndrome. I read several pages of the chapter one evening and just broke down sobbing thinking of all the things that could go wrong with my baby. I decided to put that book on the shelf and refer to it on an as needed basis instead. And you know, I've only referred to it for teething. Not for heart defects, G-tubes, hearing loss, sight loss, leukemia, etc. There's just so much to be grateful for. I am a woman richly blessed by the health, love, and joy of my little boy.

At First You Hold Your Breath

2009-08-14T11:50:00.000-07:00

Well, on the lighter side of things. I've been trying to teach Bear to eat fingerfoods by himself, meaning that he takes a Cheerio from my fingers and puts it in his mouth. We've pretty much got that down pat. However, be careful what you wish for. Now that this child knows how to "feed himself," he wants to take on the spoon. He now thinks that when the spoonful of baby food comes to his mouth, he's also supposed to grab the food from that and feed himself. Needless to say, mealtime is no longer a tidy occasion.

But I laugh, and laugh, and laugh some more. I was terrified that Bear would have all these feeding issues and continued to hold my breath as we did exercises for oral stimulation and worked to get him eating solids. Now, I'm just so glad for this mess.

All Bets are Off

2009-08-10T11:45:00.000-07:00

Though I wouldn't like to admit it, I must confess that after reading books and hearing parents' testimonials, I held fairly low expectations for Bear's achievement of developmental milestones. However, with this child, all bets are off. Here he is at nine months eating baby food, feeding himself pieces of graham crackers and bananas, sitting with little to no assistance, and attempting to army crawl. Believe it or not, that's right on target with developmental milestones. This little booger is out to prove us all wrong. Love my little guy.

If

2009-07-20T13:23:00.000-07:00

A good friend and I were walking a couple weeks ago, and she asked the one question no one will ask. She asked "if." Now "if" is quite possibly the most loaded word in the English language. There are so many things it can mean, but the greatest connotation is that it simply represents what may never be. In fact, if you look it up in the dictionary, the definition is full of uncertainty. Maybe that's why "if" is a word and a place I try to avoid.

As we walked, Amber asked if it's hard for me to be around my friends and their children. And the truth is yes. Yes it's hard to be around others' babies and see that they're progressing more quickly than Bear. Yes it's hard not to compare them to Bear. But I can't live in that place. I can't play the "if" game. What if Bear has health issues? What if Bear gets made fun of? What if Bear isn't able to walk or talk? Bear will always be around other kids and he'll never be the same as his peers, but if I begin to play the if game, I'll become a lonely and bitter woman.

Instead, Bear's teaching me to celebrate him in the moment and enjoy the blessing he is. The incredible love and joy that overflow my heart as a result of my little man far outweigh the fear of the "ifs" out there.

Gratitude

2009-06-15T07:52:00.000-07:00

I was always an optimist as a kid. I don't know when it happens to us, but it seems that most adults are pessimists, and unfortunately, I fear I've joined those ranks. For some reason, it's so much easier to see the glass half empty; we find the little things to nitpick and complain about when in reality, we have so many big things to give thanks and praise for. I've decided to committ myself to (I hate this--it sounds so cliche) an attitude of gratitude. Instead of getting down about Bear's Down syndrome, I'm going to be grateful for his health and the person he is becoming. Instead of getting upset about the load of laundry my husband didn't get done, I'm going to be grateful for the kind and loving husband and father he is. Instead of complaining about family and in-laws, I'm going to praise God that I have a family who loves my little guy so much and is so supportive.

As I watch Bear barrelroll across the floor, laughing and yelling the whole time, I can't help but have a heart filled with gratitude. It's so easy to become narrow minded when you're handed any kind of diagnosis...we automatically think we're the only ones going through this or have anything to deal with. Then I take Bear to Peyton Manning's Children's Hospital and see a nine-year-old walk in with a baseball cap masking her bald head as she battles leukemia. I meet parents of Joe, a three-year-old with Down syndrome who has a hole in his heart which will need surgery to repair, sleeps w/ a ventilator, has a feeding tube, isn't walking or talking...and the list goes on. My little guy is SO healthy, yet I still find myself wallowing in self pity at times. I am so grateful that he is active, lively, energetic, loving, goofy, and fun.

If only we could each stop during those moments of temporary insanity when we're raging and complaining about something and give thanks...what a different world we would live in.

More "Normal" than "Different"

2009-03-19T18:49:00.000-07:00

So when I was given the diagnosis of "Down Syndrome," immediately I began to mourn the "normal" life that Bear would never have and how "different" he would be from everyone else all his life. Four months into the journey, I can't help but almost laugh at what a foolish response that was. I look at this baby boy I love so much and think, "How could I? How could I have ever been sad that you are the way you are?" Bear is the most precious, pleasant, and sweet baby I have ever been around (and I've been around a lot of babies). I am so spoiled by his loving nature and how sweet he is.

Not only that, but four months ago I was prepared for this baby who would be sick all the time, would develop incredibly slowly, and would be unresponsive. My advice to parents receiving this diagnosis: don't read the books. I was prepared for the worst because that's all the books can tell you. They can't tell you how when your child first learns to smile it's with his eyes. They can't tell you how sweet it is when your child snuggles up to you and sleeps peacefully on your chest. They can't tell you how much joy your child brings when he laughs at your silly noises and faces. They can't tell you how proud you'll be when your baby lifts his head during tummy time and learns to roll over.

Different? Sure Bear will be different and is already different from other babies. But in a bad way? Absolutely not. If "normal" means fussy and demanding, I'll take my Bear any day.

Check Your Ego at the Door

2009-01-17T08:31:00.001-08:00

I've always been a high achiever, whether it be in academics, athletics, or my profession (I think it comes with being a people pleaser). I expect excellence of myself and of those around me and am disappointed when one or the other fails. So, tell me, how does a high achiever expect excellence of a child with special needs?

One of the greatest lessons I've learned from Bear thus far is that having a child with special needs is the ultimate ego check. All those things that we as parents hope for (I hope my child gets my brains, his daddy's brawn, my sense of humor, etc.) suddenly evaporate. Instead of searching for the ways my child is like me, I find myself searching for signs of development. Will he smile soon? Is his muscle tone developing? Can he hold up his head and look to both sides? And I know I'll continue to look for those things as the years progress. When will he walk? How long will he sign before he can speak? Will he potty train before starting school?

Ultimately, having a child with special needs is the greatest lesson in humility. We all pray for it--God make me a more humble person--but aren't truly prepared for the way he answers that prayer. Who would pray, "God, please give me a child with speical needs so that I may become more like you?" Our children typically serve as such a source of pride, and not to say that I'm not one proud mama because I am, but I've already experienced discrimation against him because of his DS and he's only 2 months old. Talk about being humbled. I can only imagine the ways he will be discrimated against all of his life, but learning how to handle that with grace and dignity and strength instead of indignation and anger will mold me and teach me humility beyond what I could have ever learned on my own.

Because He is Loved

2008-12-22T10:04:00.000-08:00

"Kids with Down's are so loving," has been a constant refrain from friends and family as they address Bear's diagnosis. Funny, because 6 weeks ago, I would have said the same thing. Now, however, I realize that too often we take for granted that love is not something that is just assumed or granted simply because of a condition. Down Syndrome does not guarantee lovingness. Bear is no more likely to be loving than any other baby. He will be loving because he is first loved. (This sounds oddly familiar.) How would Bear possibly know what it is to be loving if we first didn't love him? He wouldn't. What we do know about children with DS is that they are more accepting of people and situations because they are not hindered by or burdened with the trivial and petty things that bog us down or keep us from reaching out to others. All it takes for a child with DS is to know that someone or something is good and they embrace that with joy.

The other refrain we keep getting is, "God only gives his 'special' gifts to 'special' people." Now, I've been raised in a Christian home, have gone to church all my life, and still recognize this as Christianese. This makes it sound as though God sits in Heaven and has a quota of babies with Down Syndrome that he must give away each year, so he seeks out only the most deserving couples to give them to (must give credit to Dan for these words). If God only gives his special gifts to special people, then why at Walmart the other day did I see a girl with DS who was obviously unkempt and probably had not been afforded all of the services possible for her? Would society say that her mother was a special person to receive such a special gift? I think not. If my first instinct was to judge that mother, I can only imagine what someone who has not been affected by DS would think.

Isn't it possible that sometimes God just lets life happen?? Dan and I are no more special than my sister and her husband who are expecting and will probably have a "normal" little boy. Why would we assume that we're set apart because God's given us Bear? Isn't it possible that we simply have to arise to whatever life gives us and be faithful in those things? I think God receives more glory in that response than if we say that God's given a special gift to a special couple. That steals the glory from God and places it on Dan and me.

Husbands and Wives

2008-12-08T10:57:00.001-08:00

Marriage takes work. There are so many marriages that crumble over such trivial things (money, sex, lack of communication). I've prided myself on how strong my marriage is to Dan...how fortunate I am to be in love with and married to my best friend. Poor Dan...I couldn't ask for a better man in the world. He is so strong, so patient, so understanding with me. I pretty much had a melt down last night, just when I thought I was on the upswing and everything was better. I just feel so alone, no matter how much encouragement and kind words people offer. Thank goodness for a loving man to go through this with me, who can kiss it and make it all better.

Taboo

2008-12-05T13:30:00.000-08:00

I love the game of Taboo...you know, the game where you're given a word that you have to describe to your teammates without using the list of words on the card or you get beeped by an opponent. My family has laughed our way through many rounds of this wonderfully frustrating game.

However, I've found that something else is now taboo in my life. The words Down syndrome can't seem to be uttered by anyone. It's like people are afraid that I'll break down if they say the words while we're talking. I just want everyone to know it's ok to ask. Dan and I bring it up, but people continue to shy away from it. I'm not sure how to make it more comfortable for others. I mean, this is everyday life for us now, so it has to be normal, even if it's not "normal" for others.

Answered Prayer

2008-12-05T13:28:00.000-08:00

I had an ah ha moment the other day...an epiphany. As Krista and I sat and visited, I shared w/ her about how when Bear and I were still in the hospital, I sat there holding him one day and just began to pray for him. (Remember, this was pre-diagnosis) My prayer was that he would love passionately, be kind and compassionate, bring joy to others' lives, and be best friends with his daddy. While Krista and I were talking, it suddenly hit me: God's already answering those prayers...maybe just a little differently than how I had dreamed.

On the way up

2008-12-02T13:32:00.001-08:00

It's amazing how quickly a heart can change. A week ago I was sad, grieving, a little angry. Today, I'm excited. I'm looking forward to what's to come. I've been in touch w/ our local parent support group and we've been invited to attend their Christmas party next week to meet some of the parents and kids. As much as every parent wants their child to be unique, to stand out, to be an individual, I am assured that my child will be a trailblazer. He won't be just another kid like the hundreds around him. He will be different and will be known for being different. My prayer continues to be that he loves passionately, has a huge heart, and brings joy to every person and situation he touches. So far so good.

I sent an email out to my co-workers today announcing Bear's condition. I asked that they not apologize because we aren't sad or sorry, and for some reason that tends to be our natural response as humans...why is it we automatically see this as bad news?

The news, part 2

2008-11-28T14:25:00.000-08:00

After being home for just under a week, we had our first pediatrician's appointment. My doctor came in and went right back out to get some paperwork (I knew it was the result of our genetics testing...the karyotype test that would give us our fate). She sat down beside me and said, "Morgan, we got your test results back, and they're positive for Trisononmy 21 that's consistent with Down syndrome." I took a deep breath, said ok, and tried to keep it together, which I did successfully for about 3 minutes before my chin began to tremble and the tears pooled in my eyes. You know, we knew this was a possibility, but it didn't make it any easier when we received the news. I guess that as a middle school teacher I see how hard life can be for kids who are different. My poor kid will always be the kid that others say, "Aw, he's so cute" about. Or the one they make fun of. Or the one who has the false impression of friends. Or the one who would manage the teams but never truly a part of them. Immediately flashes of what wasn't to be ran through my mind at a million miles an hour. I couldn't help but mourn and grieve for what wouldn't be for my child.

I called Dan to see when he was coming home. He could tell something was wrong but played along w/ my charade. As soon as I hung up, I received a text from him asking if I needed him to come home now. I responded and told him I was fine. The next second he sent one back asking if Bear had Downs. As much as I wanted to ignore that text and just allow him to go through the last couple of hours of work, I couldn't hide this from him. I wrote back yes, and he was home within 20 minutes. I tried to be strong but couldn't help from crying We both did our share of crying that night as we shared the news with family, gave up dreams we had for our child, and prepared to face the unknown.

Today, 5 days after receiving the news, I can honestly say I'm at a much better place than I was on Monday. However, it doesn't mean I don't still grieve the child that could've been. Yet I know there's so much in store for us. I read all these encouraging accounts of parents of children with Down syndrome, and they speak of unconditional, unspeakable love that results from their child. In fact, that's all that anyone can say right now in an effort to comfort me. But that's easy to say when you're sitting on their side of the fence. When you don't have a child w/ special needs, it's easy to tell people about how he's going to be so loving and how we'll all love him so much and learn so much from him, etc. It doesn't make it any easier for me to let go of what could've been. I know God will heal all of that in time; I trust he will. I know eventually I'll enjoy Holland (if you don't get this allusion, there's a pretty cool story out there...just can't think of the title right now). But right now, is it ok if I have a bit of a pity party and feel a little resentful about it?

Finally...home sweet home

2008-11-28T13:42:00.001-08:00

After 6 days at the hospital, we got to bring Bear home. Elated, exhausted, overjoyed. We were naive, young, and in love with Bear. I wouldn't put him down that first full day home; after all, we had time to make up for. Mom came down and helped get laundry done, meals made, etc., and Ron and Lee Ann and Angie and Jay came that night to visit. Everyone who laid eyes on him fell in love. The first week at home is still a blur as we had so many visitors and I was so sleep-deprived. But I can't complain. Bear never cried, and I'm not exaggerating. The kiddo literally let out a little whine every now and then and was done. Everyone commented on what a pleasant guy he was. I knew it seemed too good to be true.

Labor?? Five weeks early??

2008-11-27T17:32:00.000-08:00

So November 11 was just a normal day with a normal doctor's appointment scheduled, but little did I know that my life would forever change that night. After my first pelvic exam at the doctor's office, I learned that I was 2 cm. dilated and 90% effaced. But I was told not to worry and that I could easily walk through the rest of my pregnancy that way. That was not to be. I got home and my water broke 45 minutes later. Cramps (contractions) soon followed, and by 10:00 that night I was at the hospital for a labor check. Contractions were more frequent and intense by this point, so they decided to give me some Nubane to take off the edge and hope to delay or stop labor. Again...not to be.

By 11:30, I was writing sub lesson plans to send with Dan to school as I finally resigned myself to the fact that I wasn't leaving the hospital and that my little guy was on his way. At 12:30 when they moved me to a maternity room, Dan left with my lesson plans and decided to swing by home to pack a bag and to shower. By 1:45 I was giving the nurse Dan's number to tell him to get here. I was 8 cm. dilated and contractions were coming every 2 minutes. Thank goodness he walked in as she walked out. What hurt the most wasn't the contractions but the pelvic exams by the nurses. They couldn't tell whether Bear was breech (he had been 2 weeks earlier at my ultrasound), and it seemed that the little part of him that they were checking out was definitely not his head (come to find out in another hour, it was his little pee pee).

Dr. Brazus walked in at 3:45 and asked if I wanted to do this or have a C-section. Knowing that my mom was able to deliver me naturally (I was breech...she took no drugs...and I was full term), gave me the confidence to say, "Let's do this."

I started pushing at 4:00 and by 4:21 had my little guy on my stomach as they cleaned him up.

They whipped him away for his APGAR testing and then to the nursery to get him on oxygen since his premature lungs weren't doing the best on his own. Before they could leave with him, I asked if he had Down syndrome, and our pediatrician confidently answered no.

Quad Screen?

2008-11-27T17:25:00.000-08:00

So, prior to being pregnant I had never heard of a quad screen...didn't know what it was, didn't know what it tested for, didn't know what the results were indicative of. However, you can bet that when I received the call that our test results were positive for Down syndrome, I was online researching. I cried and cried as I read about Down syndrome and then I rejoiced as I heard account after account of those whose test results had been a "false positive." Though the test brags only a 5% false positive, it seemed that everyone I talked to had either received a false positive or knew of someone who had. Surely we were in that category, too. I mean, we had no family history of any kind of birth defect, chromosomal disorder, etc. We were both young and healthy. We had done everything right. How could we possibly be having a child with Down syndrome?

Regardless, we went through two Level 2 ultrasounds to see if there were markers of Down syndrome present. We didn't receive anything definitive. Doctors are so worried about covering their butts and being liable that they don't give you anything useful. All we got was, "Well, he could possibly have a short femur, but then again, he could be a healthy kid who's just a little slow growing. His nasal bone looks a little short, but kids w/ Down syndrome typically don't have a nasal bone at this point. It looks as though there could be a bright spot on his heart, but I can't really tell." After seeing three different specialists, including a perinatologist to do a heart scan, I felt confident our child was fine (though our chances were one in seven). I don't think the nagging ever left Dan, though.

The news

2008-11-27T17:18:00.000-08:00

April 2008. The test was positive. The first thought that ran through my mind was, "Oh my gosh! I have to take another one to make sure this is right." Then of course, I couldn't think of how I was going to break the news to people...to my husband Dan, my sister who had lost a baby earlier in the year, my parents that they were finally going to be grandparents. Since I was already planning on meeting Dan for lunch that day, I started thinking of creative ways to tell him, but as soon as we sat down to our Fazolli's and he had blessed our food, I blurted out the news through a huge smile and tears. He had to check his hearing, and I repeated the news. "Hon, I'm pregnant." We both sat there dumbstruck looking like two silly idiots, smiling from ear to ear and crying.

A few weeks later, we were in at the doctor's office for an emergency ultrasound to make sure there was a heartbeat. I had some bleeding and was scared to death we'd lost him already. Thank God we found one. Again...tears of joy.

May 2008. Mother's Day. I handed Mom her gift...a card for grandma to be along w/ an ultrasound picture and an angel of a grandma holding her little blessing. Some more tears.

June 2008. Quad screen. Results come back positive. Tears of fear.