I had no idea that my baby would be born with Down syndrome. I did not have any testing done prior to birth due to a scheduling mishap. I had missed the time period for the Alpha-Fetoprotein test, and decided that there was no way that something could be wrong with my baby. And even if there was something wrong it wouldn't change a thing. So we got ready for our new baby to come into our family just like any other expectant parents. We read all the books, went to Lamaze classes, and prepared the house for a bundle of joy to enter our lives.
The day that Monte was born was very eventful. The labor was complicated, as soon as i got the epidural the baby's heart rate dropped dangerously low and I had to have an emergency C-Section. Things got a little messy in the operating room. My breathing was compromised due to the epidural going up too high into my chest and I almost stopped breathing completely. The doctor accidentally cut Monte's head when she cut me open. We didn't really get to see the baby right away because there were so many complications, so we waited for the pediatrician to come in and tell us everything was fine... but everything wasn't fine. After a while, he came in to talk to us. I was expecting him to tell me that my newborn baby needed stitches from being cut during the C-Section, or something. Instead he gently told us that he was testing the baby for Down syndrome and had a pediatric cardiologist on the way to look at the baby's heart. My heart sank for a brief moment. Down syndrome? How could this happen to me? I was so young and healthy! After about 30 seconds of not breathing I gasped for a breath and then asked the doctor bluntly, what was actually wrong with the baby. I got it right away. I didn't understand it, but I got it. I wasn't upset, I didn't mourn for a healthy child, I had a beautiful baby boy to hold in my arms and that was all that mattered. We were so very lucky that our little Monte did not have any heart problems, as 50% of the babies born with Down syndrome have a heart defect (a hole in the heart that requires immediate surgery and usually several surgeries within the first few years of life). As far as I was concerned I had a healthy, beautiful baby boy!
Next came telling our friends and family that our baby had Down syndrome. This was very difficult and our family members didn't all take it so well. Some were mad, some were sad, some didn't know how to feel and others were accepting immediately, but everyone cried. At first, it felt like a funeral instead of a birth. Everyone told us how sorry they were for us. Then they brought our baby in and the sad tears turned into happy tears. Some took a while to accept the fact that Monte had Down syndrome, it was questioned and until the test results came back there was always a doubt that maybe just maybe he is normal. Regardless everyone loved him from the moment they held him in their arms. Eventually the desire to have a 'normal' baby faded away and our friends and family began to develop relationships with Montgomery that could not be replaced by 'normalcy'.
I knew nothing about being a mother, and even less about being a mother to a child with Down syndrome. All I really knew about Down syndrome was that there would be intellectual disabilities, and we had a rough road ahead. Early Intervention got involved right away, sending someone out to the house when Monte was about 2 months old to begin to work with the baby and to teach me how to work with the baby. I read a couple books that they gave me from the local Down Syndrome Association, and began to try to understand this chromosomal anomaly. Everything that I read told me that this was simply an anomaly and there was no explanation, but I always had a feeling deep down in my heart that I had done something wrong or didn't do something I could have done to prevent it. I knew that it had to be my fault! Eventually I got some one on one time with a genetic counselor that explained everything much better than the books in a way that I could understand. They explained to me that this was not my fault, that there was no humanly way to possibly cause or prevent my child from being born with Down syndrome. I finally felt relief. No more guilt or commendation, I was finally free to be a mommy that didn't do anything wrong.
I worked with Monte making him do things that he didn't really care to do, teaching him how to do the simple things that typical babies usually know how to do or learn on their own. Teaching my baby how to grasp toys, lift up his arms, move his hands together, keep his tongue in his mouth, forcing him to get up on his legs to learn to move himself, and even teaching him how to eat are just a few examples of what its like to be a mommy to a baby with Down syndrome. Everything that most new parents take for granted, everything that most new babies learn to do on their own or with little prompting came very hard for Monte. He didn't learn to walk until he was 2 years and 2 months old. Slow and steady was our motto and we had to take each milestone at Monte's pace. None of the books or guidelines for milestones were helpful for us. Everything had to be tailored to Monte. It was impossible to compare our baby with other babies, which is a very common practice for most new mommies. There were times when I felt like we didn't belong somewhere or felt out of place.
There have been many medical issues that we have overcome or outgrew and still more to face. Everyday we have struggles and deal with difficulties. Monte has behavioral issues and acts out in school as well as at home. Spending time with friends, going to church, making it to appointments and even running everyday errands can be difficult with Monte. Just because something is difficult doesn't mean that its bad. Monte is a blessing, not a burden. He teaches us about unconditional love and he has a deeper understanding of the Heavenly Father than most adults including myself. Monte is a great big brother, a good helper around the house, an example at church, he gives the best hugs, casts no judgment and is teaching me more about patience and compassion than I thought I needed to know. I am a better person because he is in my life. My heart is softening more and more every day, and I am being molded into the me that God wants me to be. Without Monte in my life I do not know who I would be today.
I have no idea what the future holds for Monte. My goals for him are no different than any parents goals for their child: to be a functioning member of society and to live a healthy happy life. I am quite certain that God doesn't make mistakes and has a good and perfect plan for Monte. I am confident that Monte will embrace life and soften the hearts of many. Monte does not just have special needs, he also has a special touch. I consider it all joy!
"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience."
James 1:2-3
