I cannot sit here and say, “Welcome, I am so glad you are here.” This is not a club that most of us would ask to be a part of, but I hope in this letter, you find comfort hearing, you won’t always feel like you do today. I know it may seem as though the world is spinning, and you can’t quite see straight - like you are standing in the middle of a crowded street, with people and cars racing by and no one can help you. You may feel as though you are sinking and struggling to even keep your head above water. I know that you’re hurting, grieving a loss (which sounds so silly because there in front of you lies a breathing baby). Not a loss of a life in the flesh, but the loss of a life that you envisioned for your child since you first learned you were pregnant. There is no preparation for this sort of thing, but I want you to know, from someone who has been right where you are, on the other side of just learning the diagnosis, you won’t feel this way forever. There will come a time when you are able to breathe a bit, wrap your head around things a little clearer, become an advocate and strong warrior for your child and yes, rejoice and be glad. I also want you to know the timing of this looks different for all of us. Not one person can or should tell you when it’s time. Here are a few things I wish I could have known upon finding out my son’s diagnosis:
1. You’ll learn to take each day as it comes. You won’t always look to what could have been, what should have been, what you thought the future would have held. You’ll learn to find joy in the day given and soon, you won’t focus too much on tomorrow, or the next day, or even the next year, but you’ll find comfort in today, knowing you can do anything, just one day at a time. It is in this shift of thinking, strength grows. It is where you can put one foot in front of the other and keep going. Your anger turns into faith when you see your child achieve a milestone you were told you’d never see. Each small win, in the step towards progression, becomes a victory that you will joyfully celebrate. Your guilt and questioning become hope and encouragement for the next greatest thing this little miracle will achieve. You’ll stop looking at those children around you and you'll stop comparing where your child should be. Please learn comparison will never let you see the joys of today! Train your mind to be grateful for something each day, even if it’s the smallest thing. A grateful heart breeds thankfulness.
2. What you knew to be normal, changes. Whether this is your first child or fifth, life would have changed regardless. Your new normal becomes just that, a new normal. Just like anything else, you’ll learn how to get through your days efficiently, productively, routinely. Soon, the life that was before this one will seem so long ago and as the days pass, you’ll soon forget the person you once were. A diagnosis produces an extraordinary person if you’ll let it. I want you to know you will become a better version of yourself. You will learn to love stronger, fight harder, and appreciate things you wouldn’t have thought twice about before. This little being will shape you in a way you would have never been able to all on your own and I am here to tell you, it is a beautiful person.
3. I can’t say, “it gets easier.” I think you grow stronger, tolerant, and able to see it through. Anything new takes a while to adjust to and this will too. Being a mother to a child is exhilarating and exhausting all in one; being a special needs Mom is just a different added layer of that. You will become a walking wealth of knowledge and often, depending on how rare your child’s diagnosis is, more knowledgeable in this area, than most doctors. It’s a very strange place to be, but it’s true. You will learn the definition of supernatural rest and the littlest amount of sleep a human can actually function on when you spend sleepless nights, bedside, with your child in a hospital. Just when you are able to finally doze off, it will be time for vitals or doctor rounds and that few minutes of rest will somehow be enough, but I promise, you’ll find time one day to get rest.
4. You may develop a new village of people who become your landing pad. You will learn what it means to lean on others, accept help and eventually, ask for help. Based on your personality, there may be those sitting on your sideline now, who will fault you for not seeing the light soon enough and criticize you based on how they believe you should be handling all of this. You may also choose not to let the diagnosis define you and your child, and in that, there will be those who just don’t know your struggle because you don’t focus on the struggle. Find a sideline who is willing to invest in the new you, learn the new you and support the new you. It’s crucial to the village you are building to surround yourself with these kinds of people. Please know you don’t have time or energy to invest in holding onto those who aren’t willing to go out of their way to be there in the day to day, and in the storms, learning and appreciating the new life you have been given.
Lastly, I want you to know there will come a time when you are able to rejoice and be glad and not wish your child was the one you had dreamed of or envisioned. I know this because they are so much more special than your best dream! (Of course, we will always wish away the hurt and suffering as it’s just so difficult to endure at any stage) But Momma, let me tell you this, you were made for this journey. Please don’t buy into the phrase, “God only gives you what you can handle.” That’s such lie. He doesn’t call the equipped, he equips the called and he knew you’d be the special heart he could mold to be everything that sweet child needs.
All my Love,
A mom who gets it
