Many of us do not understand what it takes to raise a child with special needs. However, I want to bring to you what one of these parents feels. All she wants is that you take up her shoes for a day if not a second and understand her journey that she has chosen to walk with joy despite its hiccups. It is a continuation of what we saw earlier.
I am scared: There are some times when I worry that I may not be doing enough for Isaiah. I worry about the future ahead of him, will he be able to drive himself around, will he ever become independent, will he ever find a spouse, and so much more. I get scared when my mind conjures up all the hurts he may go through seeing that he is different in this very harsh world. Besides that, I fear for the person who may try to inflict any pain on my son. I am also scared about finances seeing that none of his needs are cheap. I also fear what will become of my Isaiah if something were to happen to me. However, my fears have over the years been superseded by my faith plus the exposure to other children, teenagers and adults who have the same disorder as Isaiah. On meeting these wonderful people at a conference I was chanced to attend, all these unknown fears, and the sadness melted away giving way to hope because I saw love thrive in their lives. Then I knew that the fears I had projected onto his life were my imaginations and not reality. The only fear that now remains is the fear of emotional pain for both of us.
I am only human: There are many times when I have been pushed and challenged to go beyond what seems humanly acceptable while raising Isaiah. It is these times and situations that have helped me grow tremendously in my personality, develop empathy and a soft heart for others in ways I do not think I would have had it not been for him. However, I am like the mother next door sometimes because I get irritated by Isaiah, I get cranky and also disappear to the shopping mall or spa for a little air. In as much as he seems to be my full-time indulgence, I still have aspirations and dreams of my own. I still dance, travel, I am working on a book right now, love a great meal and still do talk about dating. I have not lost myself, and if all I talk about seems just to be my life, then you need to know that it is not easy laying the details of my son there in the open.
Please stop using words such as retard, as long as it’s healthy: I know that it is not always their intention to be rude. I am also sure that before Isaiah came along I might have made those comments and used those terms. However, the tide is different now in that when I hear them, I feel hurt well up in me. Please stop using those words, it is hurtful and disrespectful to those who have given all they are to raise the children you are mocking. Then for the pregnant women that always use the comment, as long as it is healthy, it is starting to sound like a thoughtless mantra. I do share and understand your wishes for a healthy baby, but if you do not get one but rather one like Isaiah, then what? All I want to tell any pregnant woman I hear say that is that you will be okay, you and your baby will be well, and life will be amazing no matter what.
I would love to talk about Isaiah, but it is difficult: Isaiah is the best thing that ever happened in my life. Sometimes I want to shout it from the mountaintop that he is the funniest, cutest boy ever, how much he has accomplished, like becoming a class president. Then there are times when the day has been so rough, or the doctor tells me about another health or development issue. Then I may not say much. I do not often let on to friends or family how much I go through regarding Isaiah. However, I still want to learn how to share my life with people. One thing that I always love is when someone asks a rather specific question like, “How is Isaiah’s speech therapy class?” It is better than a general question like “How is Isaiah?” as it makes me feel overwhelmed with emotion hence giving a dull response, ‘Good.’ Starting from somewhere is what gives me a chance to share, however if I am not sharing, it does not mean that I do not want to, or there is nothing going on.
Parenting a child with special needs has changed my life entirely. Coming from a home where perfection and performance are more important than anything else, it got me to judge myself and others unconsciously through that lens. Nothing shatters such lenses more than having a harmless, adorable and sweet child born to you with impairments for he or she makes everyday living and ordinary ‘performances’ close to non-existent.
I have now got to learn that true love is meeting someone; whoever they are with whatever they have or do not have, exactly where they are. Raising a child with special needs shatters all the perfections we carry in life, putting love and understanding in its place. So, in case you have been wondering, it might be tough but in many ways I know and believe that I am blessed.