There are several reasons why I enjoy writing on this blog. To begin, it enables me to alleviate the tension and anxiety that have built up as a result of the constant barrage of information, medical checkups, and online research that I have been conducting at night. My feelings are like a yo-yo, and writing helps me feel more stable by giving me a sense of control over them. But it’s not all selfish. I also enjoy being able to share this adventure with each of you. It’s nice to know that I don’t have to repeat myself a thousand times, that you all get accurate and up-to-date information directly from me and not from someone else, and that many of you are reading these posts and sending us your thoughts and words of encouragement. These are all things that make me happy. It feels as if we’re not going through it alone.
As the weeks pass by and we grasp a better grasp of Nolan’s illness, I am becoming increasingly aware of how challenging it must be for you to be in this situation. What would you say to someone who has just been given news that will completely change their life? How do you respond? There is no simple response to this question, and over the past few weeks I have devoted a significant amount of time to contemplating it on my own. The truth is that there is no “right” thing to say or do… each text, phone call, and email is special and gives us the love and support that we so much need at this time. However, I feel that it would be helpful to provide guidance on how to handle this situation, because most often we hear “I don’t know what to say”. I wouldn’t have either.
I guess I still don’t. However, this will not be the last time you are faced with this question. There may also be strangers who will look at this blog and ask for advice on how to support someone who has just learned that their child has Down syndrome. With that in mind, I have come up with the following tactics (even if you have said or done some of the things on the “DON’T” list, that’s OK too). I am not harboring resentment or anger, but as I mentioned,I wouldn’t have known how to react either. This list is a reflection on the past few weeks and what has helped us the most. (Whatever your reaction to our news, we love you all.
Say “I’m sorry.”
The other day, Henry and I had a lengthy conversation about it. He believes that expressing condolences is a natural response, which is good, but I did not like the condolences that were offered. Because we are still caring for a child, and we require support and love rather than sympathy at this time. When we learn that someone has cancer or has passed away, I believe that “I’m sorry” is the first thing that comes to everyone’s mind, regardless of whether or not we really voice our condolences out. Although having Down syndrome is not the worst possible outcome, receiving this diagnosis does call for a significant adjustment in expectations.
The first year after Logan was born, Henry and I had outrageous dreams about him. To be a musical prodigy, to attend an Ivy League school, to speak 12 languages, and to be the starting quarterback of his high school football team. Of course, these were lofty ambitions, and now that we understand a little more about his strengths and weaknesses, we realize that most of them are unrealistic. Of course, these things were not known immediately, but gradually over time.
A diagnosis of Down syndrome is like learning all of these things at once, and in our case before Nolan was born. Children who have Down syndrome present on the same continuum as those who have autism, so although it is challenging, it does not necessarily have to be terrible news. It’s possible that some youngsters are more badly affected in one area, but they don’t have any issues in other areas. It has been established that more modern ways to early intervention can dramatically improve the quality of life for people who have Down syndrome, and the earlier that care begins, the greater the likelihood that Nolan will enjoy a life that is healthy, fulfilling, and independent. The words “I’m sorry” immediately make him feel as though they have turned their backs based on misinformation and outdated stereotypes, even though he knows no one meant it that way.
To be honest, that’s what hurt the most. I was so touched by the many people who rushed to offer me support, especially those who I hadn’t had any contact or correspondence with over the years. The thought of people taking the time to write emails to let me know that they were available if I needed anything was very touching and really helped me cope with the news more easily. However, there were many people who were silent and some of them were close friends and family. I realized that too. Maybe I should have thought of other things, but I honestly recognized people who never emailed, tried to call, or even hit “like” on a Facebook status linked to one of these many posts. It’s okay to say “I don’t know what to say,” but it’s not okay to say nothing.
Expect a response.
I am sorry, since I am aware of how terrible it is. In spite of what I wrote above, there has been a significant amount of love between us throughout these past several weeks. However, we have had a lot of things going through our heads. We are unable to keep up with everything, including answering everyone’s questions, dealing with the news, parenting a child who is two years old, and going to the several doctor appointments that we have had recently while also working full time. It’s just not feasible. But your messages were read and met with overwhelming gratitude and love. I promise.
Say “what about ________________?”
(fill in the blank with a sibling’s name…in this case, Logan). What about him? He still has a little brother. He will probably learn more about empathy and the power of family from his brother than he would have otherwise. He will undoubtedly be more protective of him and there will be times when his wants will have to take a back seat to meeting Nolan’s needs, but Logan’ needs will always be met. He will learn patience, acceptance and the true value of good people sooner than most children. It may be hard for him at times, but in the long run, the experience of being Nolan’s big brother will make him a better person.
Offer to help.
There is nothing you can say or do in this circumstance that will help the parents feel any better. They will deal with the diagnosis when the time comes. However, knowing that many of you will be there to lend an ear or a shoulder to weep on makes us feel as though we are not alone, and I have no doubt that other parents who find themselves in a similar circumstance will feel the same.
Express your unconditional love for the baby.
Nolan can’t change who he is. He will be born with Down syndrome and will face some challenges as a result of his diagnosis, but he is still a baby. He still deserves love, cute baby clothes and a party when he’s born. It also helps parents to spot it earlier. So offer to organise a baby shower or help paint the baby’s room. Prepare a meal for the family when the baby arrives. Send flowers, balloons and teddy bears when the baby is born. Show parents that you’re as excited as they are about the baby’s arrival, even if he or she hasn’t been diagnosed. They need this.
Check up on them.
Even when I am aware of the availability of assistance and am in a position where I could benefit from it, I am unable to put together the words necessary to make a request for it. My pride gets in the way of my ability to get things done, and this circumstance will be no different. It’s likely that I’ll put on a brave face even if I’m breaking apart on the inside in order to fulfill my mission of demonstrating to the world that children with down syndrome are similar to children who are developing normally. It could happen tomorrow and it could happen five years from now. . Unless you specifically ask me to do so, I won’t be able to swallow my pride and admit it. This advice should be taken into consideration by all new parents, not simply those whose children have unique need. Therefore, make it a habit to drop by every so often to lend a helping hand or provide a few words of encouragement; it won’t go unnoticed.