A Thankful Thursday

If you had asked me a year ago about gratitude, I would have gushed about our newborn screening story and how thankful I was that LB's metabolic condition was detected quickly.  About how we were notified immediately, before he was ever in any danger.

I would have told you about the nursing assistant in the hospital who urged me to put some drops of formula on my breast to encourage LB to nurse during those early days when my milk was not yet in.  About how I was certain that repeating this practice during each and every nursing session in his first few days of life contributed to him being able to remain adequately nourished before we knew about his MCADD.

I also would have told you about our pediatrician who, after hanging up the phone with the newborn screening coordinator who notified him of LB's presumptive positive for MCADD, was literally driving to our house so that if we didn't answer the phone, he could knock on out door and personally give us the instructions to wake and feed him every two hours to keep him healthy through the night.  This same pediatrician gave us his home phone number so that we could always get in touch with him quickly and has been the most wonderful partner in LB's care ever since.

I definitely would have told you how grateful I was that I could hold my son in my arms and see him reach milestones and see him smile at his mommy, daddy and big brother.  I would have told you how everyone in our families offers prayers of thanks for his life and for those who contributed to saving his life.

Although I am most certainly still grateful beyond words for all of that, I am amazed at how my gratitude for newborn screening continues to grow.  I have met some incredible people in the last year.  Some of these incredible people studied public health and genetics and science and now work day in and day out to save babies lives as a part of their job. I learn from them every time I talk to them and I have a tremendous amount of respect for the work that they do.

I have also met other incredible people who have walked a similar road to mine, as concerned parents learning about the wonders of newborn screening only after it touched their lives in some way.  Some of these parents have healthy children like our LB, who only require just a little more loving care and attentiveness than any other child.  Some of them are mourning children that they have lost due to delays in testing or the absence of a test for a particular condition in a particular state. Still others of them have children that are fighting for their life every day with conditions detected too late or conditions that don't have a complete cure.  We are all a little different, yet all of us have united in a singular mission to increase awareness of the lifesaving and life-altering gift of newborn screening.  Meeting these other moms has given me both camaraderie and strength.  Knowing them and having the ability to share our journey with one another has expanded my passion and given me a never-ending energy to keep newborn screening advocacy at the forefront of my mind.

So this year at Thanksgiving, when we go around the table to share what we are most thankful for, I will once again say that I am thankful for newborn screening because it allowed me to know my child and for us to be a family.  In my heart, I know that this statement will be shared at every Thanksgiving meal for a very long time and that it will have a deeper meaning to me each and every year.

Thank you for reading my blog and sharing this journey with us.  May you also have a happy Thanksgiving with the ones you love!