Just wait. Those two little words that most moms of little kids hate to hear. But, if I could, I would use those words to speak to diagnosis day Sarah....
Dear diagnosis day Sarah,
I know you are grieving about the baby you feel you lost, but JUST WAIT this kid is going to make you a better mom and a better version of yourself. Even though it will still be rough at times, you will learn to celebrate in all that Thomas CAN do and not to be so focused on what he might not be able to do. His victories, which may seem small to others, will be worthy of a parade in your head. You will beam with pride at the little badass that he is.
I know you are worried how you and John will navigate this scary path in front of you and you know that special needs parenting is very rocky terrain that many struggle through and sometimes don't make it, but JUST WAIT! You have never had a doubt that he is the man for you, but you will come to find that he is more incredible than you thought. Later tonight, you will pack up your boys and go for a drive to get out of the house and Johnny will tell David a joke in the backseat which will lead to them cracking up with their amazingly innocent and full blown little kid joy and John will look at you and say, "no matter what happens, we will still have this and we will always all be able to laugh together, this won't change!" and for the first time all day, you will be able to breath. You will be at a level II ultrasound in a about a week and while the two of you are waiting in the room and you begin to lose it once again, he will be the calm, level-headed guy that he is and point out that even in a worse case scenario, we are still getting a new baby and we won't love him any less because maybe he can't walk or maybe he will be developmentally behind and you will breath once again and know that everything is going to be ok.
I know you are concerned about how this will affect Johnny and David, but JUST WAIT those two kids will amaze you. Johnny will immediately love and want to protect his little brother. He will proudly say to strangers that baby Thomas has a boo boo on his back and the doctors are helping him. He will take his favorite stuffed friend, Colonel Quack, and pretend to cath him, just like we cath baby Thomas. He will ask to hold baby Thomas so he can help to make him smile. He will tell you when he doesn't think baby Thomas is feeling well and that we should take him to the hospital so they can help. David will ask to talk to Thomas on the phone and say that he wishes he could come home soon. They will both be incredibly flexible when schedules get changed and they have to stay with grandparents.
You think your family is the bees knees now, JUST WAIT! Your entire family will step up. When you tell them the news of Thomas's spinda bifida, they will cry with you. They will immediately start to think of how they can help or what they can do. This diagnosis is part of them as well and they will own it right along with you. They will help babysit the other boys at the drop of a hat, they will decorate hospital rooms, they will send loving thoughts and drive to Cincinnati just to make sure you can get out of a hospital room for 10 minutes, they will make food, they will literally do ANYthing you need, even if you don't ask. They will teach you what it means to have a village and they will love you through this.
You already trust your friends immensely with your heart (because they are flipping awesome) but you are concerned that this will alienate you from them, but JUST WAIT, they will become Thomas's biggest cheerleaders and supporters. They will be an ear for you when you need it and they will be happy to not discuss it when you don't. They will change an annual trip that you all love to come be by your side when you need it most. They will pack up their kids and drive to just have lunch with you and offer a smile. Friends you haven't had much contact with in years, will come out of the woodwork to offer support and prayers or share knowledge that they may have in an area that Thomas may need. Even friends of friends, that you don't know very well, will make you food and just drop it by your house. Strangers will pick up on Thomas's story and find ways to help. Your faith in people will be resoundingly restored and it will be such a cathartic process to experience what it is like to be a small part of a much bigger whole of humanity.
You don't understand much about spina bifida, but JUST WAIT! You will become an expert on all things Thomas. You will be able to speak with the doctors and medical professionals about what options you would like to explore, you will be able to assertively advocate for him when you don't feel a course of action is in his best interest. You will soon go from being a question asker on the spina bifida forums and groups, to a question answerer.
So, you see, diagnosis day Sarah, if all this will happen in just a year from where you are now, can you even imagine what will continue to happen.....JUST WAIT!
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