Because He is Loved

"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

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

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

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

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

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 Trisomy 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

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??

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?

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

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.