How do I live day-to-day wondering if this will be my child's last day?

I friend just gave me your wonderful book and I loved it. My husband and I are Christians and have a five-year-old son. We also have a son who is 20 weeks old today. Five days after he was born, he was diagnosed with a brain malformation. We are caring for him through his intractable seizures, G-button feedings, etc. The doctors don't have a specific life span for him, although they doubt he will live beyond childhood. It could be today or 10 years.

My question for you is how do we live day-to-day wondering if this will be the last day? And how do I, when I think I can't go another day watching him suffer, think about doing this for another 10 years?

I don't know that I have a definitive answer to this, but I'll share with you what helped me.

First, regarding living every day. As much as possible, when I had an idea of something I wanted to do with Hope or Gabe, or someone I wanted them to meet or spend time with, I just didn't put it off. I did some bold, and to some, perhaps, outrageous things in terms of parties and pictures and travel. And I don't regret any of it.

The challenging thing is that much of life is made up of ordinary stuff like making dinner and folding laundry and doing your taxes. You feel this tyranny of not wanting to waste any time on ordinary things. I think you have to just realize that having your son with you doing the "ordinary" things is really the essence of enjoying life. And don't be hard on yourself when you realize you haven't done anything "special" that day.

Take as much time as you can to just feel his skin next to yours, to just be quiet together and enjoy the simple pleasure of being together. Those are the times I long for when I miss Hope and Gabe.

In regard to how to do it long-term, when Hope was a few months old I took her with us to a cub-scout event for my son. At that point I was very unsure of how long she would live and how big she would get. There was a family there with a severely handicapped daughter. I went and sat down with the mom while she was feeding baby food to her 11-year-old, knowing that she still changes her diapers and never gets any response from her. And I asked her, "How do you do this? And how do you keep doing it?"
She told me, "If I think about doing this for another 30 years, which is a possibility, then I think I can't do it. So I just wake up every day and say, "I can do this today. I can take care of Julia today. And then I get up the next day and do the same thing."  That helped me.

I have no doubt that what Jesus said to Paul—"My grace is sufficient" —he says to you, and that he will give you the grace you need in the form and timing and quantity in which you need it.

Sharing your joy and your sorrow—


Follow-up Question:
I wanted to let you know how much your encouragement has meant to me over the last two months.  And I wanted to let you know that we said goodbye to our sweet baby yesterday morning with blessed hope and assurance of his heavenly home and eternal rest.  He declined quickly and it was very peaceful as we were able to hold him in our arms at home and kiss him goodbye.  We look forward to the day we will see him again, but I will miss his chubby little body and soft skin.  You helped me remember to hold him and touch him and I thank you for that.  We will bury him tomorrow morning, which I know will be hard.  But I must remember it is just a shell and that he soul lives on in heaven.  In a way I thought this would be a bit easier because I didn't have to watch him suffer any longer, but I guess I just have to grieve and be sad that we don't get to see him every day here on earth.  I know it will just take time.

Thank you so much for letting me know. I'm so sad with you as I feel with you the emptiness that he is gone and the fear about the grief ahead.

Yes, burying his little body is hard. I think the absolute hardest. It feels so wrong to walk away from that precious body you have cared for. I'm so sorry you have to do that.

In regard to the grief ahead, you are right that it takes time. But it takes more than that. Time, for some people, just causes their resentment and isolation and distance from God to grow. Time doesn't necessarily heal unless you invite God to do his healing work day by day during that time. It is the time invested in seeking to make sense of this in light of scripture, the time spent pouring out your questions and disappointment to God and asking him to touch you and heal you, time spent confronting your tyrannizing thoughts with scripture that brings healing.

I hope you will get a copy of my book, The One Year Book of Hope and begin your way working through it. It really represents the things I needed to understand and deal with in the months following Hope and Gabriel's death, and I think it might be helpful to you in the days ahead.

Sharing your sorrow—