*This post was published on May 11…If you are looking for the most current update please follow this link Amplitude…well blended and balanced
“I told her that I still take medication, and every morning I take that little pill with a prayer of thanksgiving that God made a way for those of us who suffer like this on such a broken planet. And, I told her that in the darkest moment of my life, I discovered that God lives very close to the floor, very near to those who are broken.” Sheila Walsh, God Loves Broken People
While hanging in the abyss of time in a hospital NICU watching Isaac heal I have had the time to finish a few books I have been in the middle of. The quote above is from God Loves Broken People: And Those Who Pretend They’re Not
Sarah Anne getting some Isaac time before surgery
I am being broken in ways too. It has nothing to do with healing, pumps, hoses, ventilators or with this hospital at all. I am struggling with surrendering and allowing people so serve us. Guys just don’t handle that well. I am the one who serves people, our family is the one who hangs around long after an event and picks up the pieces, resets the platform when everyone else has gone home. We are the ones who serve, fix things, talk to other parents who are struggling with the news of a not-so-perfect child. We are the ones who are creating the “manual” on how to effectively clean poo from a ceiling fan. We ( mainly “I”) have a hard time being served…Okay, I said it. “My name is Kevin and I have a hard time being served.”
While we are attending to Isaac, there are hosts of people who are arranging care for Sarah Anne and Matthew, helping with fundraising to help send Hannah to Mozambique, Africa and Megan to Marvel, Arkansas on missions trips this summer, people who are planning and plotting to enter our home and finish my painting project and tackle the huge mommy-is-nesting list that I still had 6 weeks to complete, until last Sunday changed our lives and “our” plan. My family is in shock (I think I even heard a gasp) that I am going to allow someone else to paint in our living room.
Another quote from Shiela’s book…more words I needed to hear today:
What if the brokeness we ask god to fix is in fact a gift? What if the wounds we beg god to heal, the burdens we plead with him to remove, are the very things that make us fit for his service? Can our brokeness be a blessing?
I, and the rest of the Troupe’s can answer that question. We are living proof and can testify that brokeness can be a blessing. I am learning, actually just starting to learn how to let go and allow people to serve. I was told a few times this week that if do not allow people to serve us, I am denying them their blessing of using their gifts, talents and wealth. I would be a stumbling block and deny our church family the opportunity to be a family…families care for one another, meet each other’s needs.
Enough about me…here is the prayer list for Isaac as you enter your weekend: Praise for his ventilator being removed today, praise that the fluid in his chest is looking better on his x-rays. Pray for restful, healing sleep. Pray for his repairs to his esophagus to heal without leaks…the plan is to introduce some fluids in his newly created esophagus early next week, pending his progress over the weekend.
THANK YOU to all of you have been praying! There is no earthly way we could feel the peace that we do as we sit by Isaac’s side. There are literally people all over the world through your friends, our friends and the Facebook community of CHARGE Syndrome families who are praying this little guy out of this hospital.
You may share these prayer needs as you feel led by using the share buttons below. If you want updates you can subscribe to the blog by becoming part of Matthew’s and now Isaac’s prayer team. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!
Very true words Kevin. Its a humbling position to be in to have to be on the receiving end of the gift. But it is also very true that if you don’t allow others to bless u with their gifts you are in fact hurting them. Prayers for you all. If you need a meal or anything plz call. I private messaged theresa this week with my number. I would be happy to care for Sarah Ann or Matthew if needed as well. I did many years of respite care for handicap children and their parents. Blessings….Hugs…and Prayers! Denise
Kevin, I recently found your blog while researching CHARGE. My brother is 55 years old and I discovered he had CHARGE syndrome while researching his choanal atresia. Although I am a pediatric nurse who has worked in a major children’s hospital, I had never heard of CHARGE. I was reading some articles and was stunned by a picture of a little boy who could have been my brother’s twin. As I read more and more, I knew beyond a shadow of a doubt that my brother had CHARGE. I told my mother to speak to the ENT, sent some articles and after almost 50 years of struggle and confusion, a diagnosis was finally made.
Over 55 years ago, support for my parents was almost non-existent. Although my brother Donald was seen by doctors at Columbia Presbyterian in New York no one could explain his facial palsy, his inability to suck, his CHARGE ears and his vision difficulties. He cried constantly and could not be comforted. They were at their wits end.
Eventually after three years of long days and even longer nights, my desparate parents were convinced by the pediatrician to institutionalize my brother. Although we spent weekends visiting him and were eventually able to bring him home on weekends, my parents have suffered from their decision for decades. They love him more than I can say and wish they would have been able to keep him with them.
For almost my brothers entire life his “condition” has been a mystery. How to meet his needs and help him to live his best life has been my parents greatest challenge. Because he has never been able to speak, he could never tell us what he was thinking, or feeling or needing.
I started reading your words only a few weeks ago. Already I feel as if I know you and your family. I marvel at your strength, I feel your worry, and I am heartened by the fact that you have knowledgeable caregivers who can help to guide your way through these challenging days.
Know that others have walked this road before you and carry you in our hearts. Thank you for sharing your life with us all. It has brought me and my family a great level of peace.
Tricia, thank you for sharing your story of Donald and your family. I cannot imagine the journey you have been on with so many unanswered questions for so long. I am glad you are finally getting some answers. If you have not connected with the CHARGE Syndrome Foundation yet, I would recommend it as there is a wealth of information and resources to help. There is a link in the right hand column of our blog. My email is in [email protected] if you would like to connect privately.
We feel blessed twice about having two CHARGEr’s. We look forward to this next step with our family.
Kevin
Praying!
Dearest Troupes,
Loving the pics and descriptions-Isaac is gorgeous!!! And…I can’t believe how big Sarah Anne is!!! I think she was about as teeny as Isaac when I first got to hold her…
sending much love….
pam
Kevin – I am following your blog and Isaac’s progress with amazement. Thank you for sharing your journey with us all and know that your whole family is in our thoughts and prayers. To Tricia – I saw your posting and I’m so happy that you have found a diagnosis for your brother and in the process have found your greater CHARGE family. I am the Director of Outreach with the CHARGE Syndrome Foundation. My name is Sheri Stanger. If you’d like to call or e-mail me – please feel free to do so. My e-mail is [email protected] and my toll free number is 1-855-524-2743. I hope I’m not overstepping my bounds by posting this info here, Kevin, but I have no other way to reach out to Tricia. And thank you for letting her know about the CHARGE Syndrome Foundation.
Yes, it is hard to accept help, and even tougher to ask for it. We are still in awe about the many ways our church family comes to our rescue. Rod and I certainly know what this means – as we too were the ones that stayed on the sidelines making sure others are having what they need. The Chef always eats last or not at all.:) We think of you daily and pray for you often. – Rod & Tuny Pierce
Glad Isaac is doing so well.
Still praying for stenth for you all and healing for Isaac
It’s wonderful that you can share the struggles of letting others help…we heard the same challenge a number of years ago when a person who wanted to do something for us said bluntly, “You are denying others the blessing of giving when you refuse to receive.” Then the flip side is after receiving so much, there’s the urge to want to give back, but we cannot always give back in a way that demonstrates the value of the gift we received w/ thankfulness! I’m glad you are allowing the body of Christ to do what they can and want to do for you. Blessings, lorna
I have never been more proud of a family as I am with your family, Kevin and Theresa! I am honored to be a part of it and Scott and I love you more than ever!
Thanks, Mary…we really need to get together someday soon!