A work in progress
They started appearing first just one, then a couple, then a few more. They show up now multiple times a week. Medical bills and lots of them.
We hadn't really put much thought into Medicaid and the rules regarding it prior to Everly's diagnosis honestly. We've never needed it nor applied for it so it wasn't something we had ever researched. As far as we knew, persons with low income or disabled were eligible. Boy, were we wrong!
Rewind to February 25, 2014 again, the day we were told of her diagnosis of Trisomy 18. It was a Tuesday afternoon. My mom was rocking Everly and I was pumping when Dr. Mendoza walked into our NICU room. She had her glasses in her hands and she had a sorrowful look in her eyes. I knew right away what she had to say. We had been waiting for the results of the FISH test which would either confirm or deny what the doctors suspected. She didn't beat around the bush and came right out with it.
"The test results are in and your daughter has Full Trisomy 18. I'm so sorry."
The blow hit hard.
She began to speak and I can honestly tell you that I have NO idea what she said.
None.
At some point, it hit me and then I began to sob. My mom sat solemnly holding the sweet baby that Dr. Mendoza spoke of, who had this awful genetic condition that would take her away from the family who already adored and loved her.
Not too long after, Jimmy appeared in the glass doors, bags of supplies from the store in hand. He knew when he looked at me through the glass what I was going to tell him.
The next few hours were a blur. I vaguely remember falling asleep with her in my arms, tubes and connections tethered to her tiny body. When I woke, I still remember the smothering sense of panic I felt when I realize it was NOT in fact a dream. My daughter had Trisomy 18 and everything that goes along with the diagnosis. I couldn't breathe. I couldn't speak. My heart ached in such a way that is indescribable. Whispering because I couldn't get a full breath, I called Pastor Jerry from our church. I didn't know what I needed except to hear about God's hand with what we were living. I was so relieved he answered even though it was late that night. Probably the most important phone call I had ever made. The overwhelming feeling of being distraught. Truly distraught. It is something only God can truly help with honestly but I will forever be grateful to the pastor for taking my call at that moment in time. I have never felt such horror and shock. It is like nothing I can even describe really.
I love my bath!
He offered to come to the hospital then but I was so physically and mentally drained, I knew that I would most need pastoring in the morning. He and his wife, Jeanna, arrived at the hospital Wednesday morning and spent hours with us, listening to me cry out why and not understanding how this could happen to us. We read scriptures and talked about God's plan and that we won't always know the answers here on earth. They prayed over us and over Everly. They left me with scriptures to study, to help with the grief I now felt.
For days starting that Wednesday we had a constant stream of official visitors...geneticists, social workers, counselors, child life specialists, and an assortment of doctors, you name it and they appeared. It was completely a blur. I don't recall much from the rest of that week and weekend. We told the boys Wednesday night. Using advice gleaned from the child life specialist, we broke the news as "gently" as we could. Garren knew what the diagnosis was immediately before we even told him. Kendan began to cry. It was a night of pain and of broken hearts, shattered dreams.
Daddy about to insert her NG tube (see it to the right) while she's sleeping.I spent the night composing the email that would inform our friends and family of the news. I posted the announcement that Thursday morning. My birthday. February 27. One I'd rather have skipped. We were still in such shock by the news and the gravity of the situation that we really had not had time to digest it for ourselves but wanted to share because we had been rather distant that week from everyone. It's odd but by telling people it made it so much more real that the distraught feeling came on stronger than ever again. It was as if it was a literal black hole that we could not escape.
Distraught.
Foggy.
Exhausted.
Drained.
Angry.
Removed.
Words to describe our state of mind that week and the weekend. Life would never be the same for us, for her, for the boys, for our family. From what we were told, her death would be imminent. How could that be? She looked so perfect, so peaceful? After 10 months of highs and lows, of emotional doctors visits, of thinking things are okay, I felt like I couldn't bear anymore. I wanted to be by myself, not have to face the world, people. I wanted no one to touch my daughter. She was mine and I needed her as much as she needed me. Her time was limited and I needed every second with her, touching her, smelling her. I had a difficult (absolute understatement) time sharing her with even Jimmy and my parents and to be honest, I still do. She was mine and I needed to be with her. I carried her for 38 weeks, knew everything about her, I didn't want to play nice. Most certainly didn't want to share her. What if today was her last day? Indeed, it was a very difficult period of time.
So, how does Medicaid/Social Security have anything to do with what I just wrote about? Simply this: our daughter was denied coverage for Social Security which would have given her Medicaid because we did not apply for it by the end of her birth month. That's right. We were supposed to have had the wherewithal at that time of grief to apply for something we didn't know we'd need all before the end of February. Do the math with me. Birth on February 20, diagnosis on February 25 and there's only 28 days in the month. The shortest month of the year. So, let me get this straight? We should have been already thinking about needing Medicaid to help cover medical bills for a baby we were told would not survive? Never mind the fact that we didn't even know that by qualifying for Social Security, she would have automatically qualified for Medicaid. Never mind the fact that with ALL the hospital staff that visited with us, we were never informed of this oh so small but important detail.
Is this a joke?
So, we're dealing with a life-altering, devastating diagnosis with our newborn daughter and now we have to contend with SSI and Medicaid bureaucracy, too?
Nope. Not a joke. This is our reality.
That is where we stand today. Denied for Medicaid based on income and denied for Social Security because we loved our daughter more than we loved the need for money. Oh, that's right, we didn't even know we were supposed to apply for SSI at that time. Oh, and in case you were wondering, just because one might be 100% disabled, it does not mean they qualify for Medicaid like I naively thought. Regardless, we are all just appalled that there is no special consideration given the circumstances surrounding our daughter's birth. We know that for a fact because Jimmy and my mom went in to appeal our denial and explain the situation. Still the answer was an emphatic no.
And, unfortunately, we don't qualify for a write-off from the hospital for her NICU bills either. Zip. Nada.
We do have private insurance which covers a portion of each bill. However, as is with most insurances, we are still responsible for our part. And still responsible for the co-pays at each specialist visit. Unfortunately, this is the cold hard truth of the situation. There are bills, lots of them that continue to pack our mailbox, waiting for our attention.
C-Section
Hospice
Medicines
Machines
Specialists
Supplies
Testing
Therapy
The whole kit and caboodle!
We are continuing to focus on the here and now with Everly while in the background worrying about the financial stuff. It's challenging. It is a strain and with my unexpected loss of income as well, it is difficult. I pray that God will sustain us and will provide for us as we care for His baby girl for as long as we are blessed to have her.
A very special shout out to my mom, Kathy, for her countless hours of research in an attempt to help us with this situation. She worked all day and then would come home and research various waivers, laws, policies, etc. She would work all day, come visit Everly across town and then go home and still research on our behalf. She even took off from work to accompany Jimmy to the SSI office as well. Thank you, mom, for all of your hard work and effort!
Patricia and Michael came to visit...brought lunch and dinner! Nice to meet you both!We continue to look forward to comments, emails, mail and packages we get. They are such day brighteners for us all! We thank you for taking time to respond and reach out to us. Some days are better than others. Some days when we learn of our other Trisomy baby friends not doing well or their premature death, it strikes a very sensitive chord in us. We feel sadness for those families and pray for their peace. So, having those bits of sunshine is a blessing!
Everly's address:
Everly Hopkins
3905 Tampa Rd. #2696
Oldsmar, FL 34677
Thank you all for your continued support for our family and especially our precious sweet pea, Everly! We love and appreciate each of you. Please keep praying for her good health and continued growth!
With love and appreciation,
Crystal
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