Sometimes when I look at Matthew I see perfection. I see the beautiful little boy that he is. I see a future without bounds. I see him without any defects. I see him whole.

Sometimes when I look at Matthew I hear the voices of his doctors. I hear them telling me all of the things that he will never be. All of the things that he will never do. I hear “we usually only like to treat these cases when there is hope of preserving brain function.” I hear “his age gives us false hope for his future.” I hear them asking me if I’m ready to give up on him yet. And while those statements are in the past, they are still a part of his future. And so, they echo over and over again in my head.

Sometimes when I look at Matthew I see his MRI scans. I see the swirling, cloudy mess that is a good portion of his brain. I see what it should look like knowing what that it is not.

Sometimes I look at him and wonder “What if?” What if I had called the nurse and insisted on seeing a doctor when he first threw up at 30 hours old. What if we hadn’t transferred him out of the PICU so soon. What if it hadn’t taken so long to get him back on dialysis? Would things be different? Would his brain have been preserved?

Sometimes when I look at Matthew I see his unseeing eyes. And sometimes when I look at him I see him looking right at me. I see him smiling back at me. Honestly, I’m not sure which one of those is true. Maybe he only sees me part of the time. Maybe I imagine him looking at me. Maybe. Maybe he’s just slowly catching up to where he should be. Maybe.

Sometimes when I look at Matthew all I can do is cry. Sometimes I don’t even know what the tears are for. Sometimes those tears are for what should have been and what will never be. Sometimes those tears are from guilt. Sometimes from pain. Sometimes because I wish so badly that my baby boy didn’t have to endure what he’s going through. Sometimes the tears flow when I see his scars and picture him back in that hospital, completely unrecognizable, surrounded by machines. Sometimes I mourn the loss of the way I had seen things going. But, sometimes, those tears are grateful tears, thankful tears, tears of rejoicing. Tears that express the feeling that can’t be put into words of having him home, of getting another moment to care for him.

Sometimes when I look at Matthew I wonder what God’s plan is for him. How is this little boy going to have a big impact? Because I know that he will. Somehow. For someone. Someday.

Always when I look at him I am overcome with love.

4 thoughts on “Sometimes

  1. Matthew has already had and continues to have a big impact. Unconditional love, support and prayers from loved ones and strangers, a reminder and hope for other parents facing similar situations and emotions that parents are the biggest strength and support for their children.
    I can’t tell you how many times I have cared for babies and their parents who were told over and over again the odds against them, the likelihood of deficits and disabilities. Babies are amazing creatures and their brains are still forming well after birth. Love, support, stimulation, nurture can be a strong force helping to mold nature.
    While your journey has been and will be challenging in many ways, and while I wish no one to ever have to travel it, I would never say anything other than you have been blessed with this wonderful boy because you are the perfect family for him. You are all constantly in my thoughts and prayers. Your strength is inspiring.

  2. Speechless. I commend your courage and faith dealing with Matthew conditions.
    Your family is a true example to follow. Love to all of you. Wilma Sue

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