I was very honored when Jessi asked that I guest blog on Life with Jack. Personally, I have turned to Jessi’s eloquent and poignant blogs during our seventeen-month-ride with our 27 weeker, Shaw.
Our stories of heartache, trepidation, fear and joy are similar in their own right. Our son suffered a brain bleed at birth, leaving him with 22 spinal taps, hydrocephalous, a VAD and VP shunt in his brain. (I am amazed at how casually I type this, while my mother-friends gasp in horror when I tell our story). As most preemies, Shaw has chronic lung disease, resulting in multiple hospital stays last RSV season. Among other things, Shaw is developmentally delayed, has PVL which will most likely to result in CP, he had meningitis, MRSA, PDA, (funny how I can’t even remember now all the acronyms).
Shaw also has subglotic stenosis, disorder of a narrow airway. Due to Shaw’s time off and on the ventilator (as recently as March of this year), scar tissue continues to build in his airway, resulting in numerous surgeries and additional hospitalizations. Our next surgery is scheduled for September.
For more on our journey visit our blog.
|Baby Shaw in the NICU|
We have another son, Nash, that was 41 weeks gestation and 10lbs. He was 15 months old when Shaw was born. At times I thought how unfortunate for our first son, our baby at the time, to have to endure seeing his parents leave every day and sob every night during Shaw’s 122 days in the NICU. Months later, I am realizing what a gift he is to us, as he provided such comic relief and a beautiful excuse to leave the hospital and ‘pretend’ to be normal. While Shaw is our angel, Nash is our sunshine.
Once Shaw came home from the hospital, it was evident it would be some time before I could return to work. With at least five appointments each week, coupled with the medical equipment, who would volunteer (much less, who would I trust?!) to keep our special baby? And then, when we aren’t at appointments, the onus is on me to emulate at home what we are learning in the therapies. Imagine feeling that the entire development of your child depends on you – how much time you allocate, how much effort you put in, how much research you do and knowledge you know. (Now, I’m not that narcissistic to believe I am solely responsible, but sometimes the pressure you put on yourself as a Mom can make you feel that way).
As Shaw’s needs increased, so did our financial concern. It didn’t take long for me to learn, once our Medicaid expired, that my family falls in a not-so-unique category where resources are limited for the development of preemies. Regardless of the hours I spent in line applying for SSI and Medicaid, we continue to be denied, based on my husband’s income. Fortunately, we have private insurance, which covers most of our hospital bills. However, therapies (physical, occupational and speech) are all capped at 30 sessions (total) annually. Anything above the thirty therapies would require to be paid out of pocket. This didn’t include any alternative therapies we wanted to try (Anat Baniel Method, play therapy, hippatherapy, aquatherapy, etc).
My husband and I have researched alternative solutions. We’ve contacted local political constituents, Council for Children’s Rights, Easter Seals, preemie blogs, specific disorder support groups, Early Intervention and more. We continue to apply for grants, talk to other preemie families, doctors, specialists and social workers to no avail.
Our frustration and battle for the best care for Shaw continues. However, after spending so many hours only to discover nothing is available, we wanted to do something about it, for families following in our footsteps. My husband and I launched a foundation called Bee Mighty.
Bee Mighty provides financial assistance to the parents of micro preemies battling significant medical challenges with limited financial resources, enhancing the child’s development and quality of life. Bee Mighty was established so that families can focus on each other and concentrate on the development of their child without the added stress of financial ruin.
There are numerous ways to get involved and learn more about Bee Mighty and how to make a difference in the development of a micro preemie or receive financial support. If you feel compelled, please donate. Our 501c3 provides tax deductions for all who participate. We also are selling t-shirts and will be hosting a fundraising event next Spring, in North Carolina called, “Paddle for Preemies”.
If you cannot donate at this time, please take the time to like Bee Mighty on Facebook or recommend it to your friends. Awareness is half the battle and all funds go directly to the development of a child.
As our battle continues, so do the infinite blessings Shaw and Nash bring to our lives. I kiss my boys every day and tell them how lucky I am to be their mother. As with Bee Mighty, our boys continue to inspire us.
|Thank you, Candace!|