Losing a Friend

Losing a Friend

A couple of weeks ago I lost a good friend of mine, a friend in HoPE. A darling lady whose daughter was born with the same diagnosis as my daughter. We met online because we both had babies due in September, hers with a devastating diagnosis, the same as my daughter. The world of online support groups was unknown to her at the time as it is most new special needs moms. She quickly took the online forums by storm! Right out of the gates she because a very faithful, reliable source of support. Always the first to speak to new moms when they joined the group. The first to offer prayers and lend a sympathetic ear. She had met a few mothers in person and developed deep, lasting friendships with them. They all had children that were the same age, all with the somewhat rare diagnosis. They lived near enough to each other for somewhat frequent visits and talked often. She passed away unexpectedly, just a few weeks shy of her only child’s 2nd birthday. My little support group was shattered. I have connections with her husband and sister online and I will be honest, I have never ever seen so many kind things said about one single person than I have about Rachel. It’s incredible. The outpouring was stunning. But more than that, I am trying to figure out why it’s been so difficult to process this loss. In this environment we lose children all the time. All the time. Survival statistics about children with Dylan’s diagnosis are crazy. Very few live to birth and even few...
The Power of Social Media in Special Needs Parenting

The Power of Social Media in Special Needs Parenting

I get it. Some people hate FaceBook and hate all social media. How annoying that people can see so much into your life – how annoying that nosey people you hardly know can find information about you! I have heard people comment about FaceBook being so horrible that you would think that FaceBook did something to them… personally. This last Friday a friend commented “FaceBook will be the downfall of society.” The passion! I offer a different perspective, and one from a special needs parent. In the last couple of days alone I have seen: A parent with a new baby boy in the NICU – the new baby recently diagnosed with something she had never heard of and she was scared. Not only was she faced with having to educate herself on a diagnosis that there just isn’t a lot of information about (and most negative!) but she dreaded the day they discharged him because then she would be responsible for all of his care. Where does she start, it was a cry for help. A parent desperately looking for medical supplies that she needed to feed her child. The proper insurance approval hadn’t been received yet and she was seeking out any extras parents may have amassed. The request did not stand long before she received offers. This reminded me of the time when someone asked for spare 60 CC syringes and before I could respond that I had an extra BOX, 20 other people had chimed in that they were willing to help. A parent struggling with taking her child to church because her sweet special...
Examples of Acceptance

Examples of Acceptance

We want you to find this blog full of helpful information and resources. We want you to be able to come to us with questions and comments and have this be a place for you to find new things to share with your friends. Along with that, we want you to come here to fill your heart. Occasionally we will be sharing small stories of acceptance, things that we have seen in our community that warm the heart. Recently a friend of mine posted a picture of her daughter Madelyn diligently working on an end of the school year self-appointed project. Every night her five year old would pull out her big bin of beads and work diligently to make bracelet after bracelet. She declared that she wasn’t going to stop until she had made bracelets for every child in her class. She set off each day with three or four bracelets in her back pack to hand out to her school mates. Adorable right? After a few comments had been made about how thoughtful this was her mom volunteered even more information, and information important to us. There is a child with Down Syndrome in her class and this child has sensory issues. Aware of this, though too young to know exactly why, this sweet girl took special care to only use smooth beads on the bracelet for this classmate “so the bumps wouldn’t bother her when she wore it.” Get out. This story made me want to jump up and down with excitement. To be aware of another child’s special needs and to make special accommodations? Outstanding!...