The Serpent

In Genesis Chapter 3, the Serpent questions Eve saying, "Did God actually say, 'You shall not eat of any tree in the garden'?" He goes on to tell her that it is ok and talks Eve into getting the fruit. When God asks her what she has done, she says, " The Serpent deceived me, and I ate."

If Eve wouldn't have listened to the Serpent, we would not know good from evil. In a perfect world this would be nice. We wouldn't be anxious or overwhelmed; we wouldn't have hate, competition, worry. After looking back at 2023 I am glad Eve listened to the Serpent and we know good from evil. Does it suck that we know good from evil? YES, but we grow closer to God because of evil things and GOOD things.

2023 brought us Evey. It also brought us into a new world of congenital heart disease, trisomy 21, long hospital stays, many appointments, lots of medicine, making sure our children don't become glass children. It has been overwhelming. It has brought more tears than anything. It has brought loneliness and depression. It has brought arguments, questioning God, jealousy of friends' babies who were born before and after Evey hitting milestones that Evey has not yet hit and feelings of giving up. It was the Serpent deceiving me.

2023 brought us Evey. It also brought a new sister for the kids to love on. It brought us patience as we wait for milestones to happen. It brought us friends and family that took care of us and our needs when we needed them. It has been amazing to feel and see the love. It brought us a new perspective on life and what God can do. It was God's GOODNESS.

While I am just now seeing and hoping to continue to see God's goodness, I have also fell in the pit of depression since going back to work. The month of November and December were my hardest months. While the joy of Evey not being on supplemental oxygen was wonderful, having to advocate for her needs as well as my students' needs has been exhausting.

Being a special education teacher and having a child with a disability has been a new world for me. While I know how to teach and advocate for my students, advocating for my daughter has taught me a lot. Being on the other side has shown me why parents are so zealous when it comes to making sure their child gets what they need in the IEP. In school, we were taught that parents know their child the best and that we should ALWAYS get their input when building the IEP. They are part of them team and can help us write goals. Parents put in a lot of work for their child to get a good education so that their child can become independent. They just want educators or whoever to put in the same hard work. It makes me mad when I see story after story of parents saying that the school is not listening to them and how they aren't doing anything to help their child. Now I know how it feels!

God has been faithful to us. He has provided medicaid for Evey and we have been able to get a nurse, physical therapy, feeding therapy and occupational therapy for her. Early intervention is key when it comes to making sure Evey hits her milestones. Our hope is that Evey grows into a strong, independent lady who can take care of herself. We want her team to see the potential in her as well.

We had gotten a nurse who told us that she thought that Evey needed a full time nurse and not split her with another nurse. Since we were new to the whole nurse thing, we went along with her. First mistake. In November, I noticed some changes in Evey's bottle feeding. She was crying every time I would show her the bottle. I talked to the nurse about it and she said, some babies are just g-tube fed. Evey then began spitting up more often, so I asked the nurse to begin venting her before and after feeds. She told me she did, but the syringe used to vent her was always dry. When you vent, the milk in her stomach and extension usually comes up and since she is half Goforth, I knew she would be gassy. The dry syringe was a red flag, so I started looking on the camera during feedings and I saw that she in fact did not vent her. So I told her again that it was very important to vent her. I ended up paying for a subscription to start recording her at the end of November.

At the end of November, Evey began occupational therapy to get help with taking a bottle along with her feeding therapy. The OT was wonderful and showed me a new way of feeding her. During Thanksgiving break she was doing great with the change. I talked to her feeding team on December 6th and we all agreed to put in a feeding protocol for the nurses to follow. I typed up a thorough feeding plan and had Duke sign off on it. This was my first step in making sure Evey got what she needed. I needed everyone to be on the same page.

After going through the plan with the nurse, the next day was better and she followed the plan, but the next few days she didn't. I understood why Evey was not taking the bottle, nothing was being done consistently. The occupational therapist came and talked with the nurse about how she fed Evey and the nurse got defensive. She was basically called out. The nurse came early the next day and asked if I trusted her because she felt that the occupational therapist was told by me that she was not feeding her properly. I was IRATE! How could the nurse blame me for what she did? I had had enough of her lies and her deception. I told her that I had seen everything on the camera and that I had seen her not vent Evey and not try to feed her. I told her that I made the protocol so that she would HAVE to follow the orders. I told her that I know the abilities that Evey has and that I wanted her to progress. She ended up leaving me and Evey, so I had to call in absent to work for two days. She said I would never find a nurse that would meet 100% of my expectations. Now I know how it feels to fight for a child with a disability.

The rest of that day was AWFUL. I ended up getting sick because my blood sugar was extremely low and I cried for half of the day. It was so bad that I called Joshua to come home and the physical therapist had to help me calm Evey so that I could get some rest. After talking with the physical therapist, she told me more red flags and told me that this was a blessing. She said Evey needs people on her team that sees her potential and won't baby her.

For the rest of December I was in a total FUNK. Do I have too high expectations? Will we find the right nurse? Will Evey become the strong independent woman we want her to be? Am I making sure the kids aren't forgotten because I am a depressed stressed out angry monster? I couldn't find joy in anything, even Christmas. The Serpent deceived me and I ate.

It wasn't until Tuesday night that I prayed to God to get me out of this funk. I wanted to see Evey drink out of her straw cup, I wanted to see the good! Wednesday morning, I woke up refreshed, I was determined to see Evey drink from her straw cup. I made the milk, sat her down in my lap, smiled and said "You can do this!" She smiled her sweet smile and curled her lips around the straw and she drank! She only took a couple of sips, but she did it! She hasn't cried since we switched her from the bottle to the straw cup and I am thankful for that! She still has a lot to learn, but I am thankful we have found something that is positive for her. God has shown me the good!

Joshua reminded me that doing life with Evey will be a roller coaster. We will have our twists and turns and our highs and our lows. We just need to remind ourselves that God will always show us the Good.

I am raising my glass and toasting that 2024 will be a year we will see more goodness and less evil, have more hope and less fear, and lean more on God and each other instead of falling for the deception of the serpent.

Prayers are appreciated as we get closer to finding out the date of Evey's open heart surgery and that she will continue to grow and develop in her own time, prayers for a nurse that is caring and sees the potential for Evey and prayers for Laney, Jonah and Ty to stay healthy and be understanding of the stress that Open Heart Surgery will bring to our family.