Dear Newly Diagnosed Family,
You are scared and devastated, understandably so. You had dreams, prayers, plans, and hopes for your child that are now gone. The ground you stand on feels like quick sand. You love your child so deeply and are connected in an intense way that this does not seem possible. The world sees a struggling child, but you see your baby that navigates their world in an amazing and adaptive way. You feel lost, helpless, and conflicted. You wonder what I could have done differently and what went wrong from the moment their existence began. You feel at times like you are in a bad dream with the loudest clock of delayed development ticking right next to you. You feel shame for the conflict going on inside of you. The pressure is intense to make sure you are moving fast enough and have the answers, but you don’t even know what questions to ask. You don’t know what to say to your family, friends, and in general people you come into contact with. You try and forget. You try and bargain. You try and convince yourself that it is not actually happening. But you know it is happening, and you don’t want it to be. You suffer silently, because how can you consider your precious child to be the cause of this level of devastation in your life? You shrug this off like it’s not a big deal, and some days it isn’t. You have a fantastic day where everything seems amazing and progress is happening. You go to bed with a renewed since of being able to do this. You have the worst day ever and wonder how you will survive this. You go to bed scared that it will happen again tomorrow. You show up on days you aren’t ready for and feel at times like you are drowning. You live this life day in and day out; putting on a smile, loving your child, and going on with the life you created. I see you. I was (and am) you. I love you.
What I wish you could see is the settling of the devastation, the gifts of the lens, and how you will shift over time. I wish I could inject in you the joy and laughter you will experience. I wish I could let you feel the weight lift from your shoulders (as it will). I wish I could give you a time machine to be able to see yourself and family 10 years from now, because the moments of magic are worth every bad day. If you don’t have strong friends, go find some they are out there waiting for you. Those relationships will sustain you like no others. You need people that will not try to fix things, but will just be there for you when you need it. I don’t believe you were purposely chosen for this because you can handle it, but you will more than handle this. And today and every day ahead, you will inspire people with the strength you will gain from just loving your child day in and day out. I can’t promise you a lack of grief in the hard days and moments ahead, but what I do promise is there are more happy, relaxed, and joyous moments than you will be able to count. But you have to promise me that you will chose to look for good moments every day, and when you find them (and you will) be grateful for this life and your child exactly as they are. Try not to linger too long in the unknowns, because it is a waste of your energy. Another thing you have to promise me is that you will take care of yourself. Your health both physically and emotionally must be a priority. You have the marathon of your life ahead of you. You and your family deserves the best you have to give.
I give you the gift today of hope and understanding. I don’t look to fix this for you or make it go away with a flick of an “I Dream of Jeannie” head nod, but I do sit with you in the lowest of your valleys and will climb with you to the highest of your mountains. You know your child better than anyone and will be their life line to our world. Your child is a blessing and will bring love and joy to so many. They will teach you and countless others lessons of the best way to live this life. So, do them a favor and do your best to let go of the fear, so you can learn from them and live with the purest of love every day.
Your friend always,