You Have What it Takes to Raise Your Child

Dear Mom or Dad to be,

I am a mom of three children who once sat in a genetic counselor’s office to hear news about my positive AFP (Alpha Fetal Protein) blood test. At the time, I was twenty weeks along with my pregnancy. I chose not to have the amniocentesis, but to have another ultrasound done to see if any more information could be gained. The news about the possibility of Down syndrome and a confirmed congenital heart defect known as AV Canal felt like a great load of questions and fears had been dropped in my lap. I relied on faith to persist and face each challenge, with the help of my family and friends.

The baby you are carrying is unique in some ways, but also very similar to every other baby. Keep in mind that your baby will look like a baby, act like a baby, and will grow gradually with all of your attention like other children do. You will devote more time and energy teaching simple steps that you may not have to teach other children, but your child will learn, and will succeed in so many ways beyond your imagination or understanding today.

When my child with Down syndrome was born six years ago I asked every question that came to mind, read everything I could get my hands on in books and on the Internet, and still had more questions. Then I spoke with a mother of a child with Down syndrome, and she helped me see the possibilities of raising my child like any other child. I spoke with a man who had a sibling with Down syndrome who felt blessed to have grown up with his brother as an example of a life well-lived.

My passion and strength grew daily raising our daughter, with my husband and two older children. Our daughter, Hannah, has taught us to look at her capabilities each day by her wit, humor, patience, and zest for life. We learn more about what she can do, and the way in which she will not give up trying to do anything she sets her mind to. The power of perseverance is obvious in the way Hannah has mastered the monkey bars, learned a few chords on her Ukulele, practiced reading her sight word book, and accomplished learning sign language and speech. We celebrate each accomplishment knowing they were once her challenges.

Today, you might be wondering if there will be anyone to help you raise a child with different needs and abilities. Support groups, agencies, nonprofits, and schools are available to help meet your child’s needs and help you take an active role as your child’s first teacher and advocate.

I strongly recommend meeting with other parents in a support group in your area. These parents have been where you are today and have experience and hope to offer. You will connect with new friends and quickly realize that the parents you meet just may be the friends you count on for the journey.

Raising a child with Down syndrome has brought out the best in our family and our community. I wish you joy and love, the two gifts that will look you in the face each day through the eyes of your child.

Love,

Diane

Happy Birthday My Dear Friend

I called out to stop you
Walking away quickly
With your child in your arms,
One dancing by your side

I could feel your sadness
Unknowing what was wrong
Listing adversities
Crushing you with their weight

Will my listening help?
Reaching out to hug you
The truth brings tears streaming
You feel invisible

Today is your birthday
Unrecognized, alone,
Rushed, harried, mind racing
Confused by obstacles

Ask God for what you need
He will hear you call Him
You are loved beyond words
Trust will let your light shine.

Gratitude

Every single day we have a choice to make: A choice to be happy or sad; a choice to be angry or agreeable; a choice to be productive or lazy; a choice to celebrate gratitude or wallow in bitterness. It is a conscious choice, mind over matter, heart over problems that can weigh us down sort of thing. What if we put all of our energy into feeling thankful for the problems that change us and shape us into better people? What if we took a good look at the joy and sometimes shear humor that comes when a situation seems impossible to handle?
This is my daily prayer, and I'm not saying that all goes hunky-dory, or that I'm a walking saint, but hey, it's worth a try! We can change our attitude with intentional focus and perseverance to do God's will each day. Feel how loved you are. Believe that you are given unique gifts and grace to carry out God's work even when you don't feel your best. Put one step in front of the other. Put one positive thought in front of the other... and go forward.
All of these thoughts are running through my brain because I caught a glimpse of something sacred. I saw love and gratitude in a deep and moving way before me as I was loading my daughter's bike into the backseat of my car. We had just finished a successful biking experience at the park. Successful in the sense that it ended with high-five's and smiles. I held onto the handle bar of Hannah's bike with the lightest touch, remaining connected under her demands of security. We did it. Her wheels turned. She braked a few times. She stopped and hiked her leg to get off the bike two or three times and I nudged and lifted her back onto the seat. Her peddle fell off and gave us a great opportunity to laugh and crack jokes about the crummy assembly job. We kept going and promised to practice again tomorrow. When we reached the car to end our trip to the park a van was pulling into the parking spot. I saw the blue tag hanging from the rear view mirror, dangling back and forth, as the van came to a stop.
I made sure Hannah was safely buckled into her seat as I walked around my car to get in. All the while I was able to sneak peaks at the fluid movements of the mother attending to her young son in the wheelchair. The automatic doors seemed to magically open, ramp lowered, and doors closed in one fell swoop. The gray-haired woman wore a loose ponytail that swayed gently as she deftly maneuvered her son, covered in a warm blanket, around the van and onto the walking path. It was almost dark. Did she just get off of work and rush to make this important date? Was this a planned outing, a scheduled therapy for the two of them? I buckled into my seat and watched the ease of her pace settle to a slow, slower, even slower step. Was she worried that the breeze would cast a chill over him? I didn't think that was it. I became aware that her purposeful steps were taken, one after the other, to look up at the trees, and out at the darkening vistas. She and he were enjoying the experience together. This was their moment. This was their gratitude. If I could have seen their faces I would bet they were smiling. It brought tears to my eyes to witness such beauty. I prayed out loud for each of them, that they would feel God's nourishing touch, that this walk would alleviate any pain and distress from the day. It did that for me. I was so grateful at that moment to see such grace, such God given grace in action.

love,
Diane