Tuesday, May 7, 2013

To The Mother Just Getting a Diagnosis

It's been on my heart for awhile to write a letter to the mother just getting a diagnosis for her child. It was not very long ago that I was one of you and I think and pray for you mothers all the time. Whether you are receiving a diagnosis in utero or after birth, whether you know what that diagnosis even is or if it's just a "something might be going on.." type of thing (been there), there are so many sweet babies that are being diagnosed with diseases and syndromes all over the world and while the emphasis most certainly should be on their care, what happens to the mother during this time? Where does she turn when she is expected to be the one to hold everything together and meet the exceptional needs of so many others? Somewhere along the way, while these these beautifully strong women are so overwhelmed with the caring of their child, becoming experts on medical terms they'd previously never heard of, navigating their way through g-tubes, learning how to care for trachs, handling the ropes of IEPs, IFSPs, therapy teams, and government assistance programs, and learning an entirely new language they never dreamed they would need to know, the needs, the desires of these mothers are being lost. Daily they are giving up on their own hopes and dreams and all the while through their grief, these struggles and pain are pushed aside and covered up. I wish so badly I could be there for you. I wish I could give you a hug, meet you for coffee, hold your hand while you cry and listen to the fears you've never been able to tell anyone before. And after drying those tears, this is what I would say.

Dear Mother Just Getting A Diagnosis,

I know you are scared. I know you are angry. I know you are hurting. And my heart breaks for you. Not because of your child and the way he or she is. No no.. definitely not because of your beautiful child. Your perfectly created, unique child who the world may define under the label of a 'syndrome' or 'genetic defect' but who you and I know is wonderfully created. No, mother. My heart breaks for you because I know. I know what you are feeling right now. I know because your heart is my heart. We have never met, yet we have shared so much. We have shared the same love for our children. The same joy and anticipation of their arrival. The same hopes and dreams. Yet we have also shared the same heartache. The same fear. The same crumbling of everything you ever thought was to be that is now not. I know.

I know you feel like your heart is shattering into a million microscopic pieces and being spread to the farthest corners of the earth, and for that mine does too. Because while I know it's part of the journey we share, and part of the healing process we must go through, I wish I could save you from it.

I know you are angry. Oh, how I know that. I know you don't think this is fair. That you don't deserve it. That you didn't do anything wrong to have to suffer with this consequence when all over the world women are doing drugs and abusing their bodies and not even wanting or caring for their children, yet having wonderfully healthy babies and you didn't do that so why are you being punished? I know.

I know you don't want to talk about it. I know you don't know what to say to family and friends. I know you don't know how to explain what is going on and how you are feeling. How could you possibly know that? You are on completely unchartered territory. Somewhere you never dreamed you'd find yourself. I know you secretly hate it when people tell you, "I'm sure everything will be okay." and "God only gives special children to special parents" or "People with special needs are such a blessing." I know you want to scream and yell that "NO! Everything is NOT okay. I am NOT any more specially equipped to handle this job and this is NOT a blessing." Yet I know you smile at those well-intentioned people and respond with a quiet "Thank you" and nod your head and try your best to keep it all together and put on a strong front. Until you are alone. And you can finally give in to the isolating feelings of hopelessness and despair. I know.

I know your heartache and I feel you pain, but there are so many things I wish I could tell you right now.

I wish I could tell you all the wonderful places this journey that you never signed up for will take you on. I wish I could tell you the immense joy your child will bring you. I wish I could tell you how he or she will become a bigger blessing then you ever imagined. I wish I could show you all the amazing people they will bring into your life that you wouldn't have known without them. I wish I could show you how inspiring they will be. But I can't. Because I know you wouldn't believe me. How do I know that? Because once upon a time.. I wouldn't have believed me either.

I know this is your individual journey to travel with your own unique twists and turns along the way, your own mountains to climb and valleys to walk through. I know our paths will look different. I know I can't travel it for you, but I can try to ease the burden, to lighten your load, by walking beside you. I know you are just starting on this road and the trees around you look dark and frightening. They seem to stretch on forever and I know you wonder if the sky will ever ever brighten again? I know it feels like it won't. I know you think you'll never get there. I know you think the fog will never lift. That life will never be fun and light hearted again. I know you feel a shadow on your heart that you believe will never go away. I know.

I know this is not the life you planned.

But let me tell you..

This life is better than what you planned. Because of the Someone who did plan it. 

This life with change you, mold you, teach you, strengthen you. This life will humble you and sustain you. This life will open your eyes to see the true goodness in people and you will find beauty where you never thought to look before. 

Is it easy? Not quite. Nothing worthwhile ever was. Will you have hard days? Absolutely. Will you still have days where you feel like the weight of the world is upon you and you just cannot possibly go on? Where the pressures and battles seem like too much to take on? You will. And on those days.. give in. Let yourself cry. Let yourself grieve the "should have been" possibilities. You are not expected to be perfect.

You will have moments of physical exhaustion when caring for a child with special needs is too much for your body to handle. Moments of mental exhaustion when the list of phone calls to insurance companies, hospital billing agencies, supply companies and such seems endless. Moments of emotional exhaustion when you cannot stop yourself from worrying about the future. And whether or not your child will walk. Or talk. Or attend a normal school. Or have friends. Or live a long life. Moments when you worry how this will affect your other children. Your family. Your home. Your dreams. Your everything.

You will have those moments. But then you will come back. Because you are strong. Because you can do this. Because there is a remarkable child waiting, just waiting for you to discover how truly incredible they are. A child who desperately needs you. Who needs you to love them. And hug them. And tell them they're beautiful. Who needs you to hold them while they experience the wind blowing in their face, who needs you to teach them that it's okay to be splashed with water, and that grass tickles beneath their feet. Who wants to blow bubbles with you and hold your hand and experience the simple joys of this world. A child who wants to enjoy life. With you. Their mother. Without being worried about IEP's or IFSP's or special classes. Without stress from phone calls to insurance companies and supply companies. Your child deserves you. And your immesurable love.

Is this how you envisioned your life when you were a little girl dreaming of your fairy tale happily ever after? Probably not. Me either. Wherever this journey leads you, please remember.. You are not alone. Just keep stepping forward, one foot at a time. You can do this. And you will. You are stronger than you think.


  1. Maria you have such beautiful and encouraging words!

  2. Beautiful. And I'm glad to see Ella enjoying sunglasses.

  3. Thank you! I think you wrote this just for me!!