I have travelled with many of you, from the time your babies were a few hours old and were in the Neonatal ICU to many years from then. I have watched you grow as individuals and have seen you suffer pain. I saw you suffering with every needle prick in the NICU, seen your anxiety at every brain scan and every single visit to the doctor or therapist. I have cried inside every time the doctor had bad news for you about the child and have prayed for you to have strength to face it, whatever it may be.
I have asked myself, just like you have why God had to allow this to happen. I knew the question was not because of your suffering, but because of the love you have for your child.
Many of you came alone, just you and the child. Many of you were blamed by your family for what had happened. Many of you had to chose between your child and your spouse and family and chose the person who needed you the most. Many of you have cried at every single therapy session, and many times I had no words to console you, your suffering was beyond my understanding.
But there are a few things I would like to tell you. This is not advice, but just a reflection of life as I see it from a Therapist’s angle.
- God always chooses the nicest parents for his special children. It beats me every time I think about it, and I always wonder why the special children came to just those parents! By nice, I don’t mean just friendly and cooperative, I mean the light that shines from within, warmth and honesty. God knows who is capable of taking care of his special children and his choices are always perfect.
- Nobody loves a child the way you do. The greatest thing special kids have taught me is unconditional love. Of course everybody loves their children. I know that I love mine, but the way you love your child is very very different. To me it is the only love in the world that is unconditional and closest to God’s love. You give all of yourself, your strength, your patience and love and expect nothing in return. That love is reciprocated by your child equally, they love you even when you are mad at them, when you angry or upset. And love is sometimes the only thing they can give you back. I get glimpses of that love at moments when they look at you, in complete adoration and that is something worth living for.
- Special children are capable of special love. Nobody loves the way a special child does. Yes, they are naughty and wind you up. Their behaviour embarrasses you. They are overly anxious about everything. But when they love, they love completely, with all their heart, holding nothing back, completely vulnerable and naked inside. A challenge to us, who are so restraint in our emotions and render affection with calculation. Some of my children remember me even if they are seeing me after 3 years. They don’t forget.
- You have grown. I have watched some of you grow from timid individuals to women with true inner strength and beauty. You would kill for your child, defend them to death. I have watched some of you start off as angry and prideful individuals, who became loving, patient and considerate mothers, few years down the lane. I have experienced soft spoken individuals become real warriors for their children. Somehow a special child brings out the best in you, as a human being and a nurturer. They are like the sand that produces rare oysters with beautiful pearls.
- I don’t always tell you the complete truth. No, I don’t, but I never lie to you either. But I am always watching you, wondering when you are ready to face the truth, so I can tell you. And even as I tell you that your child may never walk or go to a normal school, or be like other children, I am hoping for a miracle, just like you.Sometimes, I tell you that I don’t know how your child will develop, and that we just have to wait and watch. It means that I so badly want you to enjoy your child, no matter what the outcome may be, and take one day at a time. It also means that there is a high chance that things may not be the way you expect them to be, but I’m praying and hoping that they will.
- I love your little one too. I pray for her, dream about him and wish you happiness. In my growth as a therapist I have realised that what matters in life is not how much your child achieves, how well they do in school or how many friends they have. I have understood that your achievements or failure don’t define you as a person, but what really matters is the love you have in your heart, the quality of your relationships, and finding beauty in each moment.
I pray that the Lord who sees you, gives you rest when you are tired, gives you peace when your heart is disturbed, gives you patience when you are pushed and strength to be all that you have to be. Amen.
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