Saturday, August 14, 2010

So It Begins...

Here it is....4:13 in the morning and I can't sleep. I fell asleep around 10 PM and have been dreaming of Downs Syndrome babies all night long. I guess that's what happens when you begin to eat, breathe, sleep, and think Downs Syndrome in anticipation of the newest addition to your family mere weeks away.

Jacob has Down syndrome.  This is his 20 week ultrasound, 1 week before we discovered his heart defect

Looking back, I should have known. I've basically spent most of my adult life preparing for "Allred Baby #4" (we still haven't picked out a name, but I'm leaning towards Jacob Andrew).
I began taking notice of developmentally challenged individuals in high school when I was working on my Young Women's in Excellence Medallion. As one of my service projects I decided to volunteer as a Teacher's Aid for the Disabled. One period of school, I'd go to the gym and we'd do P.E. (i.e. physical therapy in the form of games,etc) with a class of developmentally disabled students. I absolutely fell in LOVE with them! What great personalities they had - so genuinely happy and sweet, and funny. I started going to get over my (knowingly) unwarranted fear of the disabled. And the experience wound up sending me down new directions as I got older.

Fast forward another year or two and I was in college. My major? Actually a double major: Education K-12 & Special Education. I wanted to be a Special Education Teacher! Unfortunately, I didn't get very far into my education before I found the love of my life, got married, quit college, moved to Spokane, and started a family of our own. But never fear! I still found ways to incorporate the disabled into our lives.

Soon after Elisha (our first child, a daughter) was born, we moved to Lewiston, ID and began managing an apartment complex that was designated for persons with disabilities. We spent 11 years of our lives, watching over and helping a wide range of individuals with varying types of disabilities as they tried to embark on a life of independence in their own apartments. It had its ups and downs. Our children (we had another child, Nathan, while at the apartments) were exposed to it all, and grew up with none of the pre-dispositions I did, and gaining an appreciation for those with disabilities. Then, we moved back to Spokane for KC's job, into a life of 'normalcy'.

Soon after moving back to Spokane, I discovered I was pregnant again - no small feat considering Elisha was now 13, Nathan was 9, and I'd had 3 other miscarriages. I thought we were done, but Heavenly Father had other plans for us! We soon discovered, long before she was born, that Courtney was going to be a little spitfire! All that kicking!!!!! I thought she was going to break bones!

Fast forward a few more months, and I began having dreams. Nothing too remarkable. It’s just that I kept dreaming that we were a family with a Downs Syndrome Child. I didn't think anything of it. They were just dreams. Nothing more. Courtney was a fluke - a miracle and we probably weren't going to be able to have any more children any way. I had a total of about 4 dreams. Again, I thought nothing of it, said nothing to anyone, and went about my business. By the time Courtney was 8 months old, I discovered I was pregnant yet AGAIN. And I was none too happy about it either! I'd already had 3 children. All of which I loved and adored, but I have never considered myself the maternal type. I didn't WANT any more children. Apparently, God has a sense of humor.

This fourth pregnancy has been a bit of a trial. From the beginning, though things have been relatively unremarkable, I kept having this nagging feeling that this child was going to be born with a disability. Nothing really jumped out at me. I just knew that this pregnancy was going to be different. So I calmly waited to hear the news, silently hoping that I was just letting my irrational fears get the best of me.

I waited through the first ultrasound and was told that our baby was perfectly normal. (Phew! sigh of relief) We went to the 2nd ultrasound at 20 weeks and discovered we were having boy who was apparently VERY active! Aside from the face and the kidneys, the Dr. gave us a clean bill of health, but he asked us to come in a month later to check on the face and kidneys because our baby had been too active and wouldn't sit still long enough for them to take pictures of them. Just a minor precaution. "I'm sure there's nothing wrong. We just want to double check". (Whew! Another bullet dodged! We got another clean bill of health!). I came back the next month and sat down with the ultrasound tech and we began to chat as she discovered, once again, that our baby was a mover and a shaker. He just wouldn't sit still. She finally got a picture of his kidneys, but never could get his face. Soon, she zeroed in on his heart and began to get quiet. I asked a few questions, and she tried to point out the four chambers of his heart, but all I could see were three!! OK, I'm no expert, but when they say 4 chambers, there should actually BE 4 chambers. She quietly spent 30 minutes taking pictures of the heart at various angles and I knew that this was it. This was the problem I'd been holding my breath for. The fear and doubt slowly crept in as I tried to talk myself out of thinking the worst. Maybe I was just being overly sensitive. Nothing was wrong, right?

I had my next Dr. Appointment immediately after the ultrasound. I went in, waited for the Dr. and he came in a little less chipper than I was used to. I LOVE my doctor. I fell in love with him on our very first visit when I came in to confirm that I was pregnant with Courtney. I could tell immediately that he would be a good doctor for our family. And that's saying a LOT considering I'd been through every OBGYN in the Lewiston Valley before I finally settled on a fertility specialist who didn't even do deliveries. When it comes to doctors I DO NOT SETTLE. Dr. Zweisler, I could tell, was a good doctor who knew his stuff and had the same values me and my family had - he held the same value on life that we did and I knew, that if the crap ever hit the fan, me and my baby would be in good hands. I just never thought I'd actually have to TEST him on that fact!

Dr. Zwiesler came in and immediately sat down. I could tell something was not right. He cut to the chase. "So, we found a hole in the baby's heart. A big hole". It all became so surreal. He went on to tell me that he wanted to learn more about it and was going to send me to a cardiologist to do another ultrasound so we would know exactly what we were dealing with. I was informed that hearts defect like our baby's was consistent with babies with Downs Syndrome. There was a good chance that my baby had Downs. By this time I was in tears. How can you not cry? A heart defect!

Dr. Zwiesler was kind enough to give me as much information as I could digest at the time, gave me several tissues, and tried his best to comfort me. All this time, I wasn't so concerned with the Downs Syndrome as I was about the pain that my soon-to-be brand new baby would be in from his heart defect. No one wants to know that their baby is sick or going to be in pain. Especially an infant. He scheduled my necessary appointments with the specialists, and I tried to compose myself. There was no need to wonder if my baby actually had Downs. I knew it in my heart. I'd known it all along. The only thing these tests were going to do was definitively confirm what I already knew to be. I dried my tears, tried to convince my doctor that I was going to be OK, and found my way back to my car to drive home.

I called my husband, left a message for him, drove home, and waited for him to call. How I got home from that Dr.'s appointment, I'll never know. Between the shock and the tears, it was one of life's little miracles. As soon as I got home, my children knew something was not right by the look on my face, and I broke the news to them. Elisha immediately began to cry and Nathan just sat there in shock. What could we do? Nothing really. Just sit and digest what little we knew.

I spent the rest of the day alternating between tears and exhaustion. I called several family members, broke to news to K.C. who sat there in shock, and cried some more. Finally, just after dinnertime, I had KC give me a blessing. During that blessing I had the strongest sense of peace pass over me and I had that moment of clarity I needed to realize that everything was going to be OK.

I could kick and scream and become completely useless to everyone around me, or I can realize that what's done is done. I can't fix it. I can't make it go away. I'm on the ride, whether I want to be or not. I might as well make the best of it and enjoy the ride as much as I could. And I knew that regardless of what happened, it would ultimately be a ride worth riding.

I'd like to say that those were the last tears I cried, but they aren't.  But the peace of mind is there.  And the knowledge that whatever happens, KC and I will be in it together.  So, it begins.......our life filled with ups and Downs (Syndrome)...

Down Right Living

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