A friend is writing a book and asked me to contribute this letter to myself when I got my son's diagnosis.
Dear me,
Wow! This is extremely overwhelming and there’s no way to get through all of the stages of grief other than going through them. So move ahead, one day at a time, and feel what you need to feel as it comes. This is not going to be an easy journey. It’s scary seeing your new baby hooked up to all of these wires, having withdrawl shakes as he’s weaned off a drug he’s addicted to at 2 weeks old. As you read the list of diagnoses and have no idea what any of them mean that’s ok, for now. Don’t Google them! You will learn as you go. Join the Facbook groups of families with same diagnoses. You will see that every child is different but you will learn so much from them. When you have a question about something that feels off, look to them, not Google.
Find doctors you trust and that connect well with you and your child. Don’t be afraid to look for another specialist, even if everyone says that this one is the best in the country. If it’s not a good fit, move on. This will apply to everyone in your childs life: doctors, therapists, schools, friends, everyone.
That other little one you have at home? They will be ok in the long run. They will learn so much from you, and their little brother. They will love and cherish every look he gives them, of course until that look includes a shove when he’s a tween ;) Do what you can to spend alone time with both of them separately, even if it’s 5 minutes. Tell them you love them and how special they are. When you’re in the hospital for extended times, bring them a gift from their little brother.
You will be your son’s voice for many years to come, in fact in many situations, for the rest of his life. But he will also have plenty to say when he’s ready. If something feels off, it probably is. Trust your gut. Doctors are “practicing” and you are the one your baby will share everything with. Maybe not with words, but he will share with you nonetheless. You know him the best. Don’t be afraid to call an ambulance when your too nervous to drive. It’s what they are there for. Print out all of your child’s info and hand it to them when they arrive. This goes for the ER/hospital intake people as well. Because they will ask you it all. Every. Single. Time.
Stand by him and teach him how to advocate for himself as soon as you can. Ask him to choose what shirt he wants to wear when he’s on the changing table. If the foot touches that one, that’s a choice and help him understand that his opinion matters, however it’s shared. It’s okay to give him space. Often the other kids stare at him to try to work out what he’s all about. Take a deep breath and spread the wisdom of understanding that all humans have something to offer this world. Everyone’s brain works differently. Some like soccer and some like ballet. And some like Thomas the Train when they are 11. And that’s ok.
Let him show the world how much joy he can share. With every gleam in his eye will come a smile on a strangers face. He will brighten your world, as well as everyone he comes in contact with.
He will learn everything at his own pace. Expose him to as much as possible. Even when it’s tricky. It may be easier to go to the grocery store without him, but how will he learn how magically colorful the produce section is and how to resist the urge to grab all the cakes and cookies.
Come up with voices or accents to read the books or sing the songs he will ask you to share hundreds, maybe thousands, of times. It will keep it more interesting to you and make it more fun for him.
It’s okay to break down, whenever and wherever you are. In fact, it’s necessary to relieve your body of the pent up stress you will hold. Take the time to laugh and cry with your friends. Weekends away, or even a phone call if that’s all you can grab. Surround yourself with those who get it. Join groups of parents with kids like yours.
Take time for youself. Walking, biking, hiking, yoga, an online stretch class. It’s what may will ask you quite often, “What have you done for yourself lately?” Find what brings you joy and do it as often as possible, even if it’s singing in the shower or taking a bath with a book and candle. It’s the only way to survive this journey with any sanity. Stop and smell the roses, or look at the shape in the clouds, or feel the rain on your face.
When times are really tough, allow others to help. People really do want to do any little thing to help, even as simple as picking up a dozen eggs from the store and dropping it on your porch. Ask for it, it’s ok. What comes around, goes around. It will be your turn some day.
You will come across many who have found their “magic bullet”. That one thing that changed their child’s world. Whether it be a supplement, a doctor, a therapy, a special diet. Try what you choose but know that every child is different and your child probably respond differently to what you try. Do what you feel makes sense because you think so, not because other people are pushing you to do it. It’s ok to be hopeful but try to keep it as balanced as possible as often it’s just another thing to add to the list of what you’ve tried. And that’s ok. As long as it’s not harmful, often all you have to loose is money… and hope.
Remember your partner. Make time to have one on one time with them as well. This time is crucial to reconnect. Open communication with everyone in your life is imperative. You don’t have the bandwidth to wait for someone to get your signal. Tell them. As diplomatically as possible. Remember, the disability community is small so do your best to not burn those bridges, even when you dream of that ball of fire separating you from that person.
Early intervention is key. Celebrate each accomplishment, no matter how small. Because progress is relevant. Compare your child to themselves only. There’s no other child on earth like them. Love will make your world go round.
One day at a time,
Me
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