Kennedy's Village

On Monday August 29, 2016, we’d just returned home from California. It was our first trip with two kids so I had A LOT to unpack. As I loaded clothes full of California sand into the washing machine, the vibration from my phone sent me back to my reality. It was a text from the Sickle Cell Disease Association of America reminding me of the scheduled information session. As I closed the residue of vacation fun in the wash, I forwarded the message to my husband.

Information Session Night

The date of the session escapes me, but I do remember that up until that point I thought I had adjusted to my daughter’s diagnosis. However, the closer my car got to the meeting location the more real this all became again. I heard “rerouting” and realized I’d missed my exit. “Rerouting” the GPS said again. I couldn’t seem to bring myself to make the turn! My eyes were cloudy from tears that took me by surprise, but I managed to hear my GPS say “arrived.”

The truth is, sometimes even though you know a thing to be true it’s usually the finality of an action that makes it real.

I knew my daughter had Sickle Cell Disease, but attending the information session made it real.

The session was packed with helpful information. We were told multiple times to treat temperatures of 101 or higher under the arm as an emergency and call the on-call hematologist. With that information and more, the session ended.

Our First Fever

My husband and I basically tried to live our lives like normal. And we did…for two days. But by night two, Kennedy was warm with a fever of 101. As our two-year-old played with blocks on the floor near my feet and our warm infant was cradled in my arms, we decided my husband would stay home with our oldest and I would go to the hospital with Kennedy.

Just two days prior, at the information session, I learned when my daughter went in for a fever, we would be in the hospital for at least 48 hours for tests and observation. My husband asked me multiple times if I needed someone to go with me and multiple times I declined. In my mind I had to stop all the dang crying and face the reality of this diagnosis. I thought facing reality meant I had to suck it up and be “strong.” That was my biggest mistake to date. I was wrong and I misunderstood the definition of strength.

There is no time limit for tears and no time limit on needing support.

You cannot anchor yourself in sadness because you will drown. So yes, you do have to press forward. However, having support doesn’t make you weak. It takes more strength to admit you want help than pretending you don’t. On this particular night, I could have used my own advice. Oh, heavy day! I needed support.

After we arrived at the hospital, we went straight to the ER. The lack of greeting from the person at the registration desk was disappointing. The lady wouldn’t even look at me! She was rude and made me feel like my very presence was bothering her. I understood right from that moment that I was going to have to pull out my super advocate cape. As my theme music played in my mind, I remain professional but I was not asking anymore. This only slightly changed the woman’s attitude, but she did finally look at me. I gave her all the keywords such as Sickle Cell Disease and fever and finished the process for checking in.

The nurses we encountered in the ER were helpful. I soon realized that I’m not going to remember all that’s going on and I would need to take notes. During our time in the ER the tests were ordered, including a urine sample and different test needing blood samples. I was clueless about how difficult it would be to get the IV placed. And this was when I could have used that support I foolishly declined.

They couldn’t get the IV placed. They poked my daughter with multiple needles over 15 times. At this point, I’d had enough! Next thing I knew, my super advocate cape goes flying in the air and I placed my body over her like a human shield. “She is barely 2 months old,” I said. “You guys don’t seem to have a good plan.”

Everyone in the room came to a halt. But I didn’t feel like anyone was listening to me. They came across as though they were the experts and didn’t need my help. At that moment, all I heard were excuses: Mom, her veins are this and they roll like that and blah, blah, blah.

It felt like they were blaming my baby! All I knew was my baby was crying an unbearable wail, and they had no clue how to get this blood out of her body. Our assigned nurse came over and gently placed her hand on my shoulders — shoulders that were still shielding my daughter. With her hand gently on my shoulder, she spoke and told everyone that Kennedy and mom needed a break.

After everyone left, I sat quietly with Kennedy cradled in my arms. I took a few minutes to do some deep breathing and praying. Holding Kennedy tightly in my arms, I told the nurse they couldn’t keep “trying” over and over and that the next person that comes in here needs to be someone that has experience with infants with “rolling veins.”

The nurse agreed and came back with two people from the IV team. At this hospital, the IV team is who they call for “difficult pokes.” We knew it was important to get the blood sample and get the fluids running, so we all discussed a plan I was comfortable with and understood. Finally! Goal achieved and blood samples had been gathered.

I could tell you more about “Oh, Heavy Day.” About how that line “collapsed” the next day and we had another round of “find the vein.” How a nurse who I’m grateful just happened to stop by to check on her interns, went to get a surgeon to replace the line. I could go into detail about how things were so confusing, the helpful people and the not so helpful people who weren’t on the same page, and that same wonderful nurse who just happened to be passing our room and called Dr. Shurney who came to the hospital to help me on a Saturday morning.

That experience taught me so many things. For starters, I keep a hospital bag in my car and a journal just for #ConqueringSickleCell.

Kennedy was hospitalized every two months for a little over one year. The experiences, though difficult, required my husband and I to accept some difficult realities and make some difficult decisions.

Quickly in our little conqueror’s journey I had to get used to asking for help. I had to lean on the real definition of strength.

Every two months we were in that hospital. It is through those experiences my husband and I decided we wanted to get more involved in patient care for Sickle Cell Disease globally. Sickle Cell Disease needs a cure and we are focused on building Kennedy’s Village to help make that happen.

Continue to walk in real strength as you face your real realities