Caring for baby Mikey & his parents

The expectation of experiencing joy when you find out you have conceived a child is natural. Bringing a baby into the world, the creation of a life, should be a jubilant occasion for the parents responsible.

And when we were informed we were pregnant, we experienced that bliss which comes along with news that two people, who share a remarkable kind of love, would become a family.

That was the hope. However, from optimistic elation came unbearable pain and heartache. We were told during gestation that our child would have a neurological condition with a broad spectrum of possible outcomes ranging from Mikey being unaffected, to seizures and early onset learning disabilities. Madison and I maintained our hope. Our son would eventually enter this world on July 3rd, 2016, at 28 weeks gestation, almost 3 months premature. For 6 months, Madison and I virtually lived in the neonatal intensive care unit at Tufts hospital, hanging on to the hope that our baby would battle against the odds of having several neurological issues and difficulties stemming from prematurity.

The last thing a parent wants to hear is that there baby is failing to strive, and will not have a fair quality of life. We were told our son wouldn't have a fulfilling life, and eventually he would succumb to his neurological condition, and pass away from these difficulties. After meeting with an ethics committee, it was deemed ethical to withdraw further treatment and take him home enrolled in hospice care.

After a six month roller coaster, our son was discharged from the NICU on January 9th, 2017. Although it's not what we expected, Madison and I have not given up hope. Our baby isn't going to strive. He won't grow into his teens, or reach adult hood. We won't get to hear him say "mama," or "dada," or watch him take his first steps. Yet, we still haven't given up hope. In fact, the hope we have held on to so tightly throughout this process has turned into faith. Faith that God has, and has had a plan for our precious baby boy, and there is a reason far greater than our understanding that is at play. Our son has touched so many lives, and our lives have been touched by so many people on this journey. Through every high and low, God gave us the most amazing people whom supported and loved us when we thought we would crumble. We have been blessed with the most amazing family, and friends, and medical professionals in the world, and we will forever be grateful.

But we must humbly ask for your support once more. This journey has been taxing; mentally and financially. The bills have piled up, and they create for us another stressor in the midst of a really trying time. Our baby is finally home, and we both wish to take advantage of every moment we are given. Madison has been out of work, and has stayed by the babies side since the day Mikey was born. Many of you know I am a disabled U.S. Army veteran and I have a fixed income that I am struggling to stretch out in order to support our circumstances. Medical bills have been acquired because testing for our son was needed that insurance was unwilling to cover. We will eventually be faced with the cost of memorial services for our son when that day comes. We don't know how much time we will get to spend with our little trooper, but we don't want to take a single moment for granted. We want to be able to experience this blessing in its entirety without the burden of struggling to make ends meet. We are working every avenue to explore benefits and assistance to relieve some of the pressure, and so in addition we reach out to you. Anything will help, and every donation will be met with our utmost gratitude. We have learned to ask for help, no matter how badly we have to fight embarrassment or shame. In this moment, we humble ourselves, and recognize that we can't do this alone.

We welcome you to be a part of our story. Every doner represents and reinforces the hope we have been bestowed by loving and caring people in all directions. Thank you all, we love you, and God bless.

Donations (0)

  • Meaghen Blasingame 
    • $40 
    • 31 mos
  • Michele Monteiro 
    • $100 
    • 31 mos
  • Anonymous 
    • $20 
    • 32 mos
  • Alex Jackson 
    • $25 
    • 32 mos
  • Teresa Farley 
    • $25 
    • 32 mos

Organizer 

Mike Johnson 
Organizer
Fairhaven, MA
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