Unconditional fear and love 

Wow y’all, I’ve been wanting to write for awhile but it’s all been so overwhelming I haven’t known what to say or how to begin. I’ll start with thank you, thank you, thank you, thank you to SO many of you who have gone out of their ways to help, support, and love the girls and myself during this insanely hard time. Rather it was monetary donations through our gofundme, snacks or dinner, care packages, my cross that hasn’t left my side, or just words of encouragement I couldn’t have gotten through this month without Jesus and many of you and for that I am so incredibly grateful. 

We started the month off losing my great grandma Pat, I know so many knew and loved my grandma. What many don’t know is how huge of a role she played in the girls and I’s lives. My childhood was less than ideal at times, I lacked consistency, often bouncing from home to home but my grandma was always there when I needed her rather it be a hot meal, a ride, a place to stay, money to make it through. Literally anything. She contributed to me learning to cook, keep a house, and be a mother. She is a huge part of who I am today, she loved me when I wasn’t very loveable. She always encouraged me, she was one of the only people that encouraged  me to continue fighting for Haven, and was so excited for her surgery and the new life it could mean for Haven. It’s been unbearable not being able to call her while being here, I cry for her frequently but i wouldn’t wish her back for anything. She is pain free now and the most perfect guardian angel. I have taken comfort this week in knowing she was my ace in the hole in Heaven and always will be. 

Haven, oh Haven. This week is what nightmares are made of. Handing my deadweight baby off to a team of surgeons for 7 hours was awful. It was the longest 7 hours of my life, we all said a prayer together before they took her and I didn’t stop until i saw her, honestly I still havent. A dear friend gave me a stone cross that fits in my hand and I’ve held it close all week. When Dr. Smith came out of surgery and met us in the conference room I couldn’t believe what she told me. Haven’s Chiari was one of the worst she has ever seen. There was zero flow in her brain, her pressure was extremely high, she had to remove quite a large membrane that had formed and attatched to her brain, when she opened Haven’s dura part of the brain literally popped through the opening which left her no choice but to remove part of her cerebrallar tonsils (lower part of the brain), she has told me over and over how badly Haven needed this and how painful her life before likely was. All of these factors in addition to Haven’s autism issues has made recovery so much harder than we thought it would be. It has been a constant struggle to get food, water, pain meds, anything in her. The nurses last week made the problem so much worse by forcefully holding Haven down and shoving meds down her throat and hiding them in literally everything she ate or drank. We broke her trust and made food traumatic for her, which is already an issue with autistic kiddos. It really just set us up for failure for the rest of the week. I thought being home in her own environment I would have more success with getting her the things she needs. Things went down hill fast though, she wouldn’t drink anything and ate very very little, I was able to sneak one dose of pain meds in her and that was it. When she woke Sunday morning she was pouring sweat, lethargic, and vomiting foam. She had gone without pain meds for over 24 hours. I drove her down here by myself and she heaved the entire way. It was the scariest and longest drive of my life. She kept going in and out of sleep and throwing up and began to choke and I contemplated calling an ambulance but kept going. When we arrived they stuck her on IV fluids, morphine, and antinausea meds. She perked up fast but has yo-yo’d up and down since. Our neurosurgeon thinks the dehydration and pain mixed with the pressure change in her brain has been her problem. That and obviously lack of nutrition and pain meds. They started her on a 48 hour IV steroid last night and are hopeful this will help. Our hopes are every day we are another day post op, her pain level will continue to go down a little, and we will be able to get fluids, meds, and food in her and build her up so that I can safely take her home.

This has easily been the hardest week of my life. I miss Mia so much my heart hurts. I have been so incredibly lonely, it’s hard being this far away from any family and friends. It’s hard having no adult interaction and being surrounded by such sick kiddos for so long. Erin has saved the day, my sanity, and my belly a couple times thankfully. My mom and Grandma were able to come down Sunday night and stay. Oh how I needed that, we laughed until we cried, just cried, and loved. I am a Grandma and momma’s girl and not being able to have them close is so hard. Being here alone it’s nearly impossible to get a cup of coffee, eat, or shower. Haven panics if I leave her side so I have to wait until she’s sleeping. Lack of sleep, food, coffee, and love has made for a lot ugly cry moments but God will see me through. This too shall pass… 

A fellow Chiari and Matilda Jane momma saved the day for me last night and strengthened my weak heart a bit. I came to the hospital Sunday with nothing and covered in puke, I didn’t think we would be here so long and after a couple of days i needed the basic necessities. This mom didn’t know me outside of Facebook. She more than willingly offered to drive over an hour and being me far more then the basics. Multiple nice clothing items, toiletries, snacks, magazines, MASCARA AND PANTIES. A stranger thought enough of my baby and me to do so much. This morning I was able to shower, put clean clothes, and mascara on. I feel like a new person. I felt love and God as I snuggled into the blanket she sent and ate the homemade brownie she made. I honestly still cannot fathom there are people this good but I am so incredibly thankful there are. 

For those that continue to ask the best way to help honestly our need is monetarily, I’ve been off work two weeks unpaid already and will have at least two more weeks off, or meals when we get home as caring for Haven currently is so demanding. And above all the prayers. 

xoxo Taylor


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