As I sit here by Noah’s bedside, I am simply amazed by the beauty of giving. “Thank you” seems to be the socially acceptable way of conveying gratitude but what do you do when those two words simply fall short? We are beautifully overwhelmed by the generosity of so many and truly look forward to the day when we can do for others.

I will soon return to work and the support raised since yesterday will go towards hiring a nurse or a support person for Noah.

Because we have received so many emails, text messages and phone calls regarding government help, I would like to share with you our struggle. As if battling CHD isn’t enough, we have also been in a battle for support.

Sean and I are both teachers and we have been doing our due diligence to take care of our finances. We have five children and therefore; we have term life insurance. We also have two full-time jobs and two part-time jobs. Because of these reasons, and others, we have been told that we do not qualify for government support.

We were recently approved for Cal-optima … with a share of cost of $14,000 a MONTH! A government representative laughed as she said that the organization basically made a joke of our application.

We were also approved for CCS however; the therapy they are offering is covered by our insurance.

We were recently denied SSI regardless of diagnosis or need.

We were also denied in-home health support.

We are in contact with the Regional Center and are hopeful that they will assist with in-home therapy once I return to work.

What we do have is faith that the Lord purposed us for a time such as this and we will overcome. We also have an incredible nurse that by happenstance, is working hard to help us appeal our case for skilled nursing. In addition, we have an amazing team of friends whom continue to work hard at helping us get our story out so that Noah’s needs will be met regardless of government assistance.

I have been asked many times by strangers, friends and family why I haven’t made the decision to simply quit my job and accept government support for which we would then be approved. I imagine this question is never meant to be offensive but it always hurts to hear. What kind of message would I be sending my children if I quit my dream job so that we can live off of government support? Sean and I come from hardworking families and it means a lot that our children know what hard work and sacrifice looks like as well. I also want my children to see their mom doing what she loves while also contributing to our family financially (just like I had the privilege of seeing)

Quitting with the mindset that the government will support us, is not an appealing answer to our situation. I want to include that although I absolutely understand why people ask the question, and while I don’t entirely mind the question, I hope others do appreciate the answer.

Many people have shared that we qualify for government support based on Noah’s diagnosis. We have not found this to be true but would certainly appreciate guidance on the matter.

I realize this blog might seem a bit heavy but it mattered to me that I share our battle behind the scene because so many of you have generously mentioned possibilities.

Please do not shy away from helping us learn more. If there is support out there that I don’t know about, please share. As it stands, I love teaching and look forward to returning to the classroom but not before Noah has sufficient support at home. We are appealing the skilled nursing denial with our health insurance agency and will be sure to let you know what comes of our case. As of now, each donation made on Noah’s behalf has allowed me to remain home with my son. We have at least two doctor appointments throughout the week and will soon have four or five once we begin feeding therapy and physical therapy. The gift of time, given so graciously, leaves me speechless.

Niccole Connally