The birth of a baby brings lots of emotion — most would assume emotions of happiness, excitement, amazement and joy.
But when your baby is born with a physical or mental disability — whether previously diagnosed or not — emotions often turn to shock, sadness, anger, bewilderment or anxiety.
What do you do with the swell of emotion? How do you handle the news and still operate as a good parent of a newborn? How do you cope when your child is born with a disability?
Identify what has died
Your baby is alive and you truly are thankful. Still, there are things that have died: dreams, expectations, hopes, wishes. Whether or not you have verbalized them, as a parent expecting a new child, you have them. And now those dreams are not to be. They are intangible deaths and are often hard to identify. Identify and verbalize them just the same.
Grieve the losses
Allow yourself to grieve as if there were a real death. While they can occur in any order, the stages of grief are:
- Shock and denial
- Bargaining with God
Two opposing forces are active during this process:
- The actual life of your child will help you deal with the losses because he or she will capture your heart and pull you into life in healing ways.
- The busyness of being the parent of a special needs child will demand more of your time and energy making it harder to take the personal time to grieve.
The grieving process may take up to two years.
Remind yourself how desperately dependent you are on God and His grace
Times like these activate the “Why, God?” question. Go ahead; wrestle with that question. If need be, seek a mentor who’s mature in the Christian faith. At some point you will need to rephrase your question from “Why?” to “What do You want me to do now?”
While you are the parent of this infant, you are also the child of a loving and understanding God. Make time to ask your heavenly Father to hold you and comfort you. If you can’t take time for scheduled devotions, sneak a few minutes where you can and whisper, “God, hold me.” Be still long enough to allow the Lord to minister to your hurt and tired heart.
Focus on what is, not on what is not
Is the glass half empty … or half full? The truth is it’s both. Recognize and admit the “half empty” part. Yes, your newborn may never get to ______ (finish the sentence as applicable). Grieve the dreams that have been lost.
You must also purposefully choose to focus your attention and energy on what he or she can do and what are attainable goals and dreams for this new family member. This is the “half full” part.
“Do what you can — not what you can’t” is a life phrase that’s easier to tell someone else than to live out. It’s still true and the “half full” is what will soothe your weary soul. When you focus on what you can do, it keeps you in control. If all you focus on is what you don’t have control over, you will feel out of control and will instill that feeling (knowingly or not) into your child as well.
Take one day at a time — literally
This is not a cliché; it’s a healthy way of life whether or not you have a child with a disability — but especially so.
- When you focus on the future it’s easy to become anxious over what may or may not happen and miss the joy and beauty of today, even if it’s hidden inside of a disabled child.
- When you focus on the past it’s easy to become regretful, to second-guess yourself and become “stuck in the past” and miss those same joys and beautiful moments.
Live in today is especially true as the parent of a child with disabilities. Today is the only place where the control that you legitimately have belongs. Today is the only place where you can interact with your child. Today is the only place where you can actually be alive.
Learn to relax. Children instinctively live in the present. Allow your child to help you enjoy the moment and to live it fully. Children are great at this — learn from him or her.
Life will settle into a normal routine. It may not have been the “normal” you envisioned but it will come. Be patient with your child, yourself, your spouse and the process, and you may find yourself laughing and enjoying life more than you ever remembered.