To the Mothers of Special Needs Moms on Mother's Day

Before I had our son Jackson, I don't think I can say I understood the power of a mother's love- that fierce protectiveness and unfathomable love that comes when you give birth to a child.

NOW I know. And because of this, mothers who have watched their daughters become mothers of a child with special needs, I dedicate this to you. 

NOW I understand that you would have given anything to take your daughter's pain away when she received a life-changing diagnosis. When you listened to her cry and say that it felt like her heart was literally breaking, I am beginning to understand that a part of you was being ripped apart as well because this was a pain you could not take away. When we were young, you could kiss our boo-boos away. When a boy broke our heart, you could comfort us and offer us ice cream. But this? This was a deeper cut. One that was invisible, caused guilt, and could not be easily stitched with kisses and ice cream.

Thank you for listening. Thank you for crying with us. Thank you for not making us feel like horrible mothers when we said we weren't sure we could do it- "it" being being the kind of mothers these amazing children need.

Yes, there were missteps along the way as both parties learned to navigate a new terrain, but each of these missteps helped us find our footing as we continue to travel along the sometimes bumpy, sometimes scary, but always rewarding road we now travel.

For it took some time for us daughters to realize that, as alone as we felt when we first received the diagnosis, our moms were walking right there beside us, waiting for us to notice and be ready to accept their help and support. 

Thank you for continuing to be our cheerleaders when we feel we aren't doing enough. Thank you for not thinking we are too wacky when we pursue alternative therapies and seek the guidance of a variety of types of doctors and specialists from around the country. Most of all, thank you for loving our children, your grandchildren. We may have been worried how our children would be accepted, and you were often the first example we saw of true acceptance, loving our children unconditionally.

We have learned many things about ourselves since the birth of our children, but we also have come to know that we still need our moms to kiss the metaphorical boo-boos that come along with this journey. Your support and encouragement deserve so much more than these words.

So, today on Mother's Day and every day, thank you. If WE were meant to be our children's mothers, YOU were the ones who raised us to be the kind of women who would rise to the challenges and revel in the joys of this crazy adventure of parenting a child with special needs. 

Happy Mother's Day to best the Nana around!

Ups and Downs of Social Media: Part 1

I will be forever grateful for what Social Media has done for me and for Jackson since his diagnosis.  I have found places for comfort and camaraderie with other moms of children with DS. Some of these moms have already become some of my dearest friends.  I have found places where moms share information that helps us keep Jackson relatively healthy and puts us in contact with doctors from across the country who have become part of Jackson's awesome medical team. I did not even know Facebook groups existed before Jackson was born, and now they are a daily source of encouragement and new ideas.

But with the amazing highs from this connectivity also come some pretty horrible lows.  Being a part of a community of people whose children are considered "medically fragile" can also be devastating on a rather regular basis.

Today I checked my Facebook newsfeed as I typically do while Jackson naps, and two posts jumped out at me instantly and immediately hurt my heart. One family's child with DS was rushed to the hospital and diagnosed with leukemia, and in Australia, a family lost their beautiful four-year-old son after weeks of fighting an infection. He also had Down syndrome.

Most times, I feel so strengthened and empowered by what I see and learn through my Down syndrome-related groups and friends. But then a day like this happens. I sit and look at these precious children with tears streaming down my face, and I wonder if my heart can handle more stories like this. I do not know these families, but I share in their fear and their pain and their grief.

I would like to say that days like today are rare, but unfortunately, they are not.  I haven't kept track, but it seems like it is about every other week when I read of another child with Down syndrome who is fighting for his or her life.  This constant barrage of grief and fear takes its toll, and though we have been lucky with Jackson's health so far, I feel I am waiting for the other shoe to drop. I know all parents worry about their children, but constantly seeing real-life examples of life-changing/ending illnesses that happen to other children with the same diagnosis as my child takes it to a different level.

So why do I do it? Why do I continue to view my Facebook newsfeed day after day?  Because I know that I can go into one of my groups and express my fears, and other moms will acknowledge them and truly understand how I feel. These mothers are "my people, my tribe"; they get "it" like few others do. So when one of our children faces something that keeps us all up at night, we rally in support because we know they would do the same for us. When one of our families suffers every parent's worst nightmare, we reach out across states, countries, oceans, and digital highways to express our grief. It is not the kind of rallying we like to do, but we know we must. Because when we look at the pictures of these sweet angels, we see echoes of our own children staring back at us through those beautiful almond-shaped eyes.

I have not experienced that kind of community many times before Jackson entered this world.  Ironically enough, these are the exact connections I thought would not happen after we received Jackson's diagnosis. I feared an extra chromosome would ostracize us, but instead it has ushered in a completely different level of understanding and relationships. And without social media, it would have taken me much longer to reach out, get connected, and find my fellow warrior moms.  So I will take the heartache and fear because the ups of this type of social media connection really do outweigh the downs.

If you haven't connected yet with other moms of children with Down syndrome, check out 

Down Syndrome Diagnosis Network.