Today I've been thinking about how blessed I am to have been chosen for this experience of parenting a child with special needs. Sometimes, when I'm really tired and feel like I just can't handle one more meltdown at 1:00 a.m., I remind myself how fervently I asked God to give me another child - and the wonderful blessing with which I was answered.

All my children are blessings. I wouldn't trade any of them for any other child. With their special gifts and personalities, they enrich my life and teach me so much about the unconditional love of God. T-Rex is no exception. From the moment he arrived, almost three months too soon, he captured my heart and never let it go. Three years later, he still holds my heart in his chubby, sometimes grubby (right now berry-stained) palms.

I am learning to adapt to the wonderful personality that is uniquely T-Rex. He's fine. He knows who he is and what he needs. It is I who have had to change my way of thinking. I had to stop blaming myself for not carrying him long enough. I couldn't stop beating myself up after his diagnosis of developmental delays and autism spectrum disorder. It has been almost a year, and I grieved for several long months, wondering if there was anything I could have done differently, wondering if T-Rex's challenges were somehow my fault.

I grieved for the death of "The Way It Should Have Been." In a perfect world, the way it should have been would be me having a complication-free, joyful delivery, with Mr. Steady by my side. The way it should have been would have consisted of the smiling doctor placing my plump, full-term baby into my waiting arms, as Mr. Steady and I got lost in those little newborn eyes blinking up at us.

Instead, what I got was so much better than The Way It Should Have Been. When I saw my silent son, smaller than many dolls, struggling to take his first breath seconds after birth, only then did I truly comprehend what it meant to lay my own heart in God's hands and entrust one of my greatest desires (the desire that my child would live) to Him. When I lay in my hospital room, in excruciating pain, listening to the helicopter, knowing that helicopter was taking my baby three hours away to be placed in the care of strangers, then I truly understood what it meant to cast aside all my own selfish ambition and not demand that my baby stay by my side simply because I missed him terribly and wanted him with me. I had to learn to let go. In letting go, I  placed all my trust in a God I couldn't see with my eyes, but perceived within my heart.

Until that point, when I saw a medical helicopter in flight, I remotely knew someone's loved one was in there and I would say a quick prayer for their well being. This time that someone was me, the loved one was mine. Although my body lay broken and mending in a hospital room, every other part of me was in the air, willing my son to live so I could at least hold him in my arms and tell him how much he was loved. That day, I learned that all life is precious, and every person who is ill, in an accident, or in other peril is loved by somebody.  

When my little miracle came home after 57 days in intensive care, a couple of weeks before he "Should Have Been" born, another battle of the "Should Be's" took place. I should have been bringing home a healthy, full term baby. Instead, I brought home 6 pounds of baby and 20 pounds of oxygen tanks, tubing, monitors, and other equipment. But, again, what I got was so much better than what I thought Should Have Been.

Before we brought T-Rex home from the hospital, Mr. Steady and I received advanced first aid training that enabled me to remain calm and do what I needed to do when T-Rex had a seizure and turned blue a few weeks ago. Had I not received that initial training when I first brought him home, I wouldn't have been prepared for the unthinkable. I would have fallen apart and possibly endangered my son's well being if I hadn't already known what to do.

In caring for T-Rex, I learned the meaning of selfless love. I'm not always "pretty" on the inside, and sometimes I can get a really bad attitude when I'm exhausted and at the end of my parenting rope. But I still love. And I continue my journey on this path with all its unexpected turns - because I still have a job to do and blessings to love. And that's what counts in the end.

I learned that I can do harder things than I think I am capable of doing, when the need arises. And I learned what it means to rejoice in all the "little" milestones that so many people take for granted because they never had to fight so hard to reach them.

And, then, last year. . . The Diagnosis. My life is truly divided into two parts: the days before September 19, 2008, and every day since then. Tomorrow I will blog about what I have learned since then and why I will never trade The Way It Is for The Way It Should Have Been.