Meet

Hannah Shroads

June 14, 2012

So, WOW it’s been a looong time since I’ve updated her page. I occasionally have people mention that they keep checking her story and haven’t seen any updates, so I figured I should probably get on that. I’m warning you, this will be a long one. It turns out, a lot happens in 8 years.

Hannah turns 13 next Saturday. THIRTEEN!!! What?! Where did the time go?!

My last update was the week after we lost our daughter, Gwen, and so to kind of pick up where that left off, David returned to his tour in Iraq and we managed to deal with the fall out of losing a child. I missed him terribly, but was also, in a way, thankful for the time apart so that I could sort out how I felt and deal with our loss on my own. I think I do better that way. Hannah started sending up red flags to the pediatrician that she wasn’t doing so well. She sort of stagnated in her growth. Her head wasn’t growing and she wasn’t gaining weight hardly at all. The pediatrician started her on a high calorie Pediasure-like formula and she still didn’t gain anything after two weeks. In fact, she lost 2 lbs. So we started discussing feeding tubes. Hannah had a g-tube inserted in October 2004, and quickly started to pack on weight. I think in the first 6 months after its insertion she gained 20 lbs. I was so happy to see my girl finally thriving, but I’ll tell you my back wasn’t so thankful. 😛

David returned from Iraq at the end of January 2005 and we went about our lives as normally as possible. We discussed the idea of trying for another baby, but he was gun-shy about it. I felt such a gaping hole in my life, it was really hard to keep hearing him say no. We finally decided to start trying the following year. Two weeks later I discovered that I was pregnant, despite the birth control I was on. Isn’t that the way it goes though? I gave birth to our fourth, and final daughter, Leah Gwendolyn, on March 29, 2006. I can honestly say I’ve never cried during any of my children’s births. I’m not sure why, I just didn’t feel quite that emotional. But everything was so different with Leah and I was bawling as much as she was when she was born. She was also the first of my kids who actually came out screaming indignantly. Surprisingly, Hannah was a bit different with Leah than she was with Summer and Gwen. She seemed more open to having another baby in our house and seemed to enjoy looking at her and listening to her.

Leah is an amazing little girl and loves her big sisters unconditionally. She loves helping me care for Hannah; running to get diapers and wipes and cans of Pediasure. No matter what I need or when, she’ll drop whatever she’s doing and run to help.

In 2010, we made the decision to relocate to North Carolina. We LOVE the weather down here and David makes quite a bit more as a Paramedic than he did in Pennsylvania, and is now in fire school for the combo EMS/Fire Department he currently works for. He loves being a fireman, he’s like a kid in a candy store.

In November 2010, we were brought to the startling revelation that we were probably in over our heads when it came to caring for Hannah. She had grown to be over 4.5 feet tall and was around 73 lbs by then. We lived in a rental house with a very short 3 steps out to the driveway. While taking her out one morning, her wheelchair wheel twisted wrong and we fell headfirst down the steps. She hit head-first, wheelchair and all, and I fell on top of her. I remember the absolute terror I felt that she didn’t make a noise. She wasn’t screaming or crying, nothing. Just silence. Her bus driver had run to us to get her upright again and there was blood everywhere. I kept screaming “Is she alright?! Is she okay?!” while trying to get up off the ground. I couldn’t figure out why my legs didn’t want to work right (I was badly bruised and sore by the time the adrenaline wore down, but nothing broken). He kept saying, “I don’t know, baby. She’s not making any noise and there’s a lot of blood.” I ran into the house to get a towel and call 911, and by the time I came out she was definitely making her displeasure known. We pressed the towel to her forehead where the blood seemed to be pouring from and waited for the ambulance, which luckily was only coming from about a mile down the street. I nearly threw her into the ambulance and jumped in after her, when I remember that Summer and Leah were upstairs sleeping and David was at work (or else I wouldn’t have been trying to get her down those three stupid stupid steps on my own). I woke them up and we went to the hospital. I kept reminding myself to stay out of the paramedics’ way while they looked her over in the ambulance and did their jobs. (Thanks David, for the ‘what NOT to do when you have to ride along in the ambulance’ tips over the course of our marriage.) They asked me if she seemd to be behaving normally, and that’s when I finally was able to see through the haze of panic I can’t even begin to describe. I realized that yeah, she actually was behaving totally normally, if not quite peeved over being fussed at. She had a huge open wound on her forehead and her knees were beginning to purple with a bruise but she seemed fine otherwise. We spent awhile in the hospital getting her a CT scan and getting her head sewn up, all of which she took like a champ. A grumbling, unhappy champ, but she never cried once. Not even when they were numbing her head for the stitches. She just hated being restrained so they could work on her.

I had called my mother to come get the younger two so they could go home and eat, and I remember when she walked in, the first thing I said was “I can’t do this anymore.” before breaking down sobbing. Anyone who knows me, knows how difficult it was for me to admit that. It admitted so much. I had spent the last 11 years under near constant physical, emotional, and mental stress. It was nearly a year and a half ago that we had this accident, and I still wake up with my heart pounding in my throat, hearing the crash of the wheelchair and feeling that panic and mind-numbing fear. I still feel immense guilt because I should have just asked for help. I should have asked the bus driver to lift the bottom of her chair up and help me carry her down. But no, I was too independent and too stubborn. I still feel guilt because, had she turned her head just a little more forward, she’d have hit the pavement on her face and it probably would have killed her. I have to mention, within a week of our accident, her bus driver sent men over to build us a wheelchair ramp that we could easily take down when we moved (and we did the next year). I cried as I thanked him. He was just as shaken up as I was and was adamant that since we were getting no help from anyone else, he would step in and help us as much as he could.

Two months after the accident, we came to the decision that, since we didn’t qualify for in-home help, we would have to look at residential placement. It was something I always refused to consider. Not me. I can do this myself, I’m not dumping my child into one of THOSE places. But I was finally brought face to face with the fact that she simply was not safe in my sole care anymore. My body was failing me; I was pulling muscles nearly every time I lifted her, and those don’t heal on their own, not when you’re continually doing the exact same thing several times a day that helped injure you to begin with. I had gone to the doctor in a panic when I felt sore spots in my breasts, and was told that it was the muscles underneath that were strained, and unless I stopped “doing whatever you’re doing” it would only get worse. Financially we were running out of options. We had never been able to get a wheelchair van, so we still had to transport her in a car seat which meant more lifting, and we had the biggest seat we could get. When she grew out of that one, we had no options left.

We “looked” at a few places online to see what was available in our area, and kept coming back to one privately run company that has several branches in various parts of the state. We had nothing like this in PA, except one group home that had a waiting list that went on for years. RHA Howell’s has been a complete and utter blessing for us. We are so so lucky to have randomly picked an area to live that has this amazing group of homes for children like Hannah. We visited two different homes of theirs that took kids with the medical needs Hannah has, one in our town and one about 20 minutes away. I felt like the bigger one in our town was my target place. It’s got it’s own school on the grounds, an indoor pool, round the clock nursing, anything and everything she could ever need. I cried the entire time we visited. I have such a hard time admitting that I’m not the best person to care for my child. I have an incredibly hard time relinquishing control. I’ve been her advocate, her sole caregiver, for 12 years, and I wasn’t sure that I could actually let go if she was admitted. We filled out the application in April 2011, and were told that, while they would do a pre-admission interview, it could be anywhere from 6 months to 2 years before a spot would open up for her, as they have a waiting list and can only admit a patient when someone else leaves or passes away. They told us they do go on a case by case basis, not first on the list, but who, in their view, needs it the most. Not even a month had passed when we got a call that one of the patients in the wing best suited for Hannah had passed away and they wanted us to contact Medicare and get everything ready for her admission, and would we be ready by the next week? I was floored. I immediately wanted to say, “No! No I’m not ready! Pick someone else for now, and call me back in 6 months!” But I was aware that if we didn’t jump now, we might really have to wait that 6 months and what if something else happened to her in my care? How much longer could I put it off before I HAD to face reality? So, on May 11, 2011, we drove Hannah to the center and went through with signing everything they threw at us, which was a huge packet. We saw her room, we met a ton of people, nurses, teachers, aides. We took her to the day room where all the other kids were doing activities or watching cartoons and we had to leave her there. I hung on to her for a few panicked minutes, not sure I could let go. I cried, I sobbed on the way out to the parking lot, my sweet Summer and Leah sobbing with me. Poor David wasn’t sure what to do with us. He knew it was the right decision. I couldn’t have done it without him reminding me that it was right, and that not only were we doing the right thing by her, but we were doing the right thing for the other two girls too. We had become a family of hermits. We either never left the house or we went without everyone because it just got to be so hard to do anything.

It’s been over a year now since Hannah was placed at Howell’s and I’m still plagued with doubt occasionally. Did I sacrifice her to make sure my other two could have a better life? Did I sacrifice them for so long so that I could keep Hannah at home? I still occasionally feel as though I’ve abandoned her. She lives not even 10 minutes away and we see her 3 or 4 times a week at least, and are able to bring her home for overnights whenever we want to. That first night she was there I called twice. We visited every other day for the first month until my husband got his new job and we had to figure out a different schedule. I called on the days we didn’t visit. I have since calmed down enough to realize that we really did make the right choice. She settled in so well the nurses were surprised.

I can’t deny the hand of God in all of this. How we found a place so close, how quickly a spot opened up, how the decision-makers saw our situation and realized that we needed a solution NOW. It’s still hard, some days I choke up when we’re saying “See you in a couple days! Love you!” Some days I have to leave quickly before I throw her over my shoulder and make a run for the door, and I feel guilty for those days. I hope she doesn’t think I’m putting in time and just waiting for the visit to be over so I can escape. It’s also brought out a change in her. She looks excited to see us. She smiles and laughs and claps her hands and yelps during our visits. When we bring her home, she snuggles right in and enjoys herself, and she doesn’t seem to be upset when we have to take her back up. It has also opened up a TON of opportunities for us at home. Summer and Leah can propose a last minute trip to the beach or out to dinner and we can say “Sure! Let’s go!”, instead of “Weeeellll, how about tomorrow? My back hurts too badly to lift Hannah today.” or “Not today guys, it’s just so much work to pack everything up and the beach isn’t really wheelchair accessible.”

Anyway, sorry for the exceptionally long-winded post. It’s been a loooooooong 8 years, so much has happened in the last 2 years alone I could go on forever. And now, PICTURES! (The one in the blue shirt with her smiling is old, but it’s my absolute favorite!) Also, tons more on our Facebook page http://www.facebook.com/sifl00.

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