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Don’t talk about us without including us!


It was such a beautiful experience for me to share our story with the Kindred Disability Ministry at CrossBridge Community Church on Sunday. The families that gathered in an upstairs room of the church were all families who are walking on a journey similar to our own. Each family caring for a child with a disability was invited to this very special breakfast. They joined together for this quarterly gathering to connect and give support.


Led and championed by church staff member, Ashley Taylor, this ministry seeks to build connections and relationships to further support the special needs community. It is an excellent example of the hard work of several parents to provide a safe, inclusive environment within a faith-based community. Well done parents!


I felt very comfortable sharing about our experiences with Robert. I knew a few of the families already, and having Chris with me to share from a father’s perspective was valuable during the Q & A. It is always a very honest time when we are invited to share with church family members.


There were three ideas that I shared as I acknowledged that these thoughts were helpful for me on my journey in caregiving:


  1. Admit that it is hard work - We as parents sometimes get so good at displaying our, “I’m fine” face, that we forget to openly admit that caregiving is really hard, constant work. I encouraged them to admit it and then continue to move towards being vulnerable even on the most stressful days. The bible verse of James 1:2 was my biblical basis for encouragement.

  2. Find some joy! -I offered a word of instruction especially to the moms that finding and holding onto an activity or job that they loved was worth it throughout their caregiving, if at all possible. I shared that teaching my private voice students through all of the medical complex years with Robert brought me great joy. Whether I was able to teach two students or seventy-five students, I committed to teach as many years as possible because it is a very meaningful part of who I am. I chose not to give that part of my life up during most of Robert’s eighteen years with us. That was a part of my self-care.

  3. Stay connected – One of the hardest things to do as you are caring for a child with disabilities is to remain connected to others. Some days you are too tired or busy to do so. At other times, you just don’t know who would understand your struggles and pain. My encouragement was to make the effort even if it is only with a few people.


The Q & A allowed for impactful, open and raw discussions around familiar topics such as the never-ending assessing of the siblings of our special needs child, the ability to be vulnerable with all of our children, the need for the church world-wide to understand the very real and present needs of the families caring for persons with disabilities in their congregations. We all agreed that it starts with families like ours taking a stand to actually say out loud,


You have ignored us and left us at home and out of your view, and now we will no longer allow that to be acceptable. We will be included!


Well, that would probably be more of my battle cry because I have been on this journey longer than all of the parents in the room on Sunday. I hope I can encourage that kind of inclusion discussion for every congregation I have the privilege to encounter. It is time that we see our sisters and brothers in our churches as whole human beings worthy of our respect and attention.


I know I did not recognize this need until we were raising Robert, but I see the need clearly now. I join with Kindred Ministry in helping the local church to find solutions that encourage inclusion for persons with disabilities. It is exactly what has been lacking and is now needed for ensuring healthy families in our communities.


We can do better.


Don’t talk about us without including us” is a real conversation coming to all of us to consider. I encourage you to be compassionate and ready to provide for the families and their loved ones we have not seen for so long.


Listening Library:Fighting For Me” (Riley Clemmons)


Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy. (Proverbs 31:8-9 NIV)


Fighting For Me

I need the kinda love that can outlast the night I need the kinda love that is willing to fight

When the going gets tough And my strength's not enough I see You showing up like never before This battle for my heart You took on from the start You are the peace when my mind's at war And oh


You will never stop fighting for me When I can't fight for myself Every word is a promise You keep 'Cause You love me like nobody else You stand up for me in the darkest night When my faith is weak You're still by my side You will never stop fighting for me You will never stop fighting for me


In the perfect timing You make all things right You paint a silver lining in this heart of mine

When the going gets tough And my strength's not enough I see You showing up like never before This battle for my heart You took on from the start You are the peace when my mind's at war And oh


You will never stop fighting for me When I can't fight for myself Every word is a promise You keep 'Cause You love me like nobody else You stand up for me in the darkest night When my faith is weak You're still by my side You will never stop fighting for me You will never stop fighting for me


Your love Is winning me over Your heart Is pulling me closer Your love Is winning me over Your heart Is pulling me closer

You will never stop Fighting for me, fighting for me Every word is a promise You keep Ohh, yeah


You will never stop fighting for me When I can't fight for myself (when I can't) Every word is a promise You keep (ohh) 'Cause You love me like nobody else You stand up for me in the darkest night (You stand up for me in the dark) When my faith is weak You're still by my side (yeah, yeah, my side) You will never stop fighting for me You will never stop fighting for me


Songwriters: Ethan Hulse / Jordan Sapp / Riley Clemmons

Fighting For Me lyrics © BMG Rights Management, Capitol Christian Music Group,

Capitol CMG Publishing, Essential Music Publishing





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LIFE UNEXPECTED
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