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When you raise children with special needs, though many parents deny the feeling, it’s common to experience a feeling of uncertainty and melancholy. In the first couple of years, and later on, these feelings are only natural as millions of hurtful, absurd, and enlightening questions flood your mind.
A question I have many times asked myself is: “As the parent of two children with Down syndrome, will I ever be able to live typical experiences as other parents do?” One “typical experience” that I craved for years was to stop being their shadow and to be able to simply lay down at the beach while they swam or played. It sounds silly, but I have realized over the years that my expectations of my children are gigantic while the ones I hold for myself as an individual, are often very basic, just like this one.
It is likely that only those who have been there can relate to the feeling of anguish and impotence you may experience as a parent when you recognize the deep level of exhaustion you are going through when you have no one around to rely on. I lived that for many years on my own. Never in my life have I resented my responsibilities nor the needs of my children. But now that the storm is over, I can look back and accept that I went through stages of deep depression that I didn’t even recognize because I was too busy trying with all my strength to help my children overcome their own struggles. I couldn’t see my own.
But today, finally life smiles with us. We are living in one of the most stable and happy moments of our lives. A moment in which our reduced family of three feels greatly blessed. But to get here today, we have gone through much more than we can tell. Nothing came easily, and because of that, everything we have achieved so far has great value for us.
With that, and in this magical time of our lives, the answer to my question came.
Finally, yesterday while sitting on the edge of the beach, a smile came to my face. Now that Emir is 13 and Ayelen is 10, I can sit from afar to watch them swim, play, and have fun on their own. I’m not their shadow at the beach anymore and I am free to join in on the fun as their mom or choose to stay sitting on the edge just to relax on my own.
Those who are just starting on this path and have young children with special needs may feel unsure that this day will come. Sometimes they imagine that their children were not born with these abilities or may never be able to achieve them because the challenges are so big. But many times these parents fail to understand that we all have been there at one point. And we all have feared and doubted ourselves and our kids. We have all have cried and tripped up along the way. In the end, only those who have been strong enough to continue rising after each fall, are the ones who can tell that our kids can do it, whatever it is. When we as parents apply the magic of perseverance to translate all our love into faith, patience and hope we can have the “typical experiences” we yearn for, whether we admit that we want them or not.
The dawn doesn’t come earlier just because you have decided to wake up in the middle of the night. There is a perfect time for everything. This is truly one of the most powerful lessons I’ve learned from my children that I want to share with others who may be crossing difficult times in the process of one day finding their own answers. It will come and it will be magical.
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