Luke's Tuberous Sclerosis Page
Amanda's Story |
 Amanda was my fourth child in six years. When I found out I was pregnant I wasn't all that excited. I had tried to be a very diligent mother with all the girls, not using medicine during pregnancy, nursing them for as long as they would, taking the vitamins, drinking the water, etc.... By the time Amanda was in the womb I was so tired of being pregnant and nursing, eating right, doing all the right things. I accepted that she was a gift from God and part of His plan, so I didn't not want her. But I wasn't exactly ready... as with all my girls, right before they were born I had that icky sinking feeling in my gut as I wondered, "What if there's something wrong with it?" I usually thought of Down's Syndrome; I would panic for awhile until God brought me to the willingness to take whatever I was given and make the best of it. I especially remember that with Amanda's pregnancy ( I only remember because I was keeping a journal at the time--I have a terrible memory!). Amanda was, as were all my girls, induced two weeks after the due date. She came out a whopping 9 lbs. 13 oz. She was beautiful, with the same dark hair and eyes as her other sisters. Ten fingers, ten toes. Good apgar. Relief. The nurses brought her to me through the night to nurse, but she was always sleeping and not too interested. Somewhere in the middle of the night a nurse told me that they had to keep her under the heat lamps because she was losing body heat. She assured me that it was probably because she was so large... but at 8:00 in the morning a nurse came in to tell me that my baby was very sick and that the doctor would explain more when he came. Dr. Mann came in about 9:00 and told me that Amanda had a major heart defect and would need to be sent to a larger hospital for surgery. The helicopter couldn't come due to fog so an ambulance came from two hours away. As we waited I sat in the nursery on a stool near Amanda, who was struggling for breath, and sang Jesus Loves Me over and over. That verse " Jesus loves me, loves me still though I'm very weak and ill; from His shining throne on high comes to watch me where I lie" became very precious to me. Anyway, Amanda was whisked off and we followed. Went by the house to hug mom and grandma and the girls, and went to Columbia to the University Hospital. The next day she had a catherization to show where the problem was, and the following day she had her first major heart surgery. I went every other day to see her. Our church supplied us with food, babysitting, rides to the hospital, cards, money, and prayers. We were so loved. Amanda was being prayed for across the country. We received a card from a church in Texas that prayed for Amanda one Wednesday night. Everyone there signed the card. That was precious. Her surgery went well. I continued to pump breast milk to feed her when she was strong enough to eat. Five weeks later she had to have a second heart procedure done. Two weeks after that we finally got to go home. That hospital stay was excruciating. She almost died so many times. Our prayers changed from telling God what to do to just praising Him for being there and for having everything under control. We didn't know what to ask for. Would it be better for her if she lived or if she died? We brought her home, still a blue baby--not quite whole. In the intensive care about the second week she was there I noticed white spots all over her torso. I thought they might be marks from where the electrodes had been stuck to her body. But no one knew what they were. At home she seemed to thrive pretty well, though she struggled with ear infections. At times she would turn blue, stop breathing, usually during a feeding. We thought it was her reflux problem. Never thought of seizures. The more I think about it the more I realize what a miracle it is that she is alive. They were short lived, few and far between, so we didn't worry too much. Her heart was always our first thought. When Amanda was 19 months of age she went to St. Louis Children's Hospital for her heart repair surgery. I dreaded that time in the PICU because of our experiences in the NICU, but I worried for nothing. We were out of the hospital a week from the day she went in. She was pink for the first time, with red lips and fingernails. She could move and go without stopping to rest. It was beautiful. Then the seizures started. I tell you, that was when I faltered. Up to this point, her problem was temporary. Heart gets fixed and things are back to normal. I was really hanging on that hope. Then we went to the neurologist and he told us she had tuberous sclerosis, involving seizures and developmental delays. I was really stunned. This was not temporary--this was forever! This was a whole new direction. I grieved. I was so tired, and not ready for another battle. But things have been good. Through it all God has always provided the strength to go on. He has provided different oases between the hard times. Amanda has always progressed, though slowly, and that gives us hope. Amanda is now six years old, but mentally she is more a two or three year old. But sometimes, with what she's been through, I think part of her is at least 30. There have been a lot of blessings because of Amanda. I owe her a lot for my own spiritual development. I am a bit undisciplined when it comes to daily prayer and Bible Study. Having her forced me to my knees. Because of Amanda we were introduced to a whole new world of doctors, nurses, and other sick kids with parents. It's a world of compassion and caring that I'm glad we didn't miss out on. I come from sturdy stock, and never thought much about those who dealt with sickness on a daily basis. We have more compassion than we used to. We don't ignore the person in the wheelchair anymore--we make eye contact and say hi. My girls are patient with Amanda and love her no matter what mean thing she might do to them. She has been good for them. My husband and I are closer because of Amanda. We are bonded to her, which binds us to each other. We know we might have her with us for the rest of her life, and that means adjusting our expectations. I would love to say that I'm quite mature because of all we've been through, but I'm still a weak vessel. When Amanda is good, I'm good. When she's having a bad time, so am I. My goal is to not be ruled by the circumstances, but to be calm and trusting in the midst of each storm. So I have a long way to go. I get concerned for my other girls sometimes, now 11, 10 and 8 1/2. We haven't had the chance to get out much together with Amanda to do family things. Amanda still doesn't know how to behave well enough in social settings to get out much. One of us always ends up chasing her around. Fortunately we have a church that accepts Amanda and doesn't mind the occasional disruption. Amanda goes to a state school here in Hannibal five days a week from 9 am to 3 pm. It's a great school with a loving, well trained staff. She loves to go. That was a hard decision--placing her in state school instead of public, but for us it was a good decision. She has really blossomed. Her language improves daily. All in all, we have hope. There is always hope. I know Amanda is not a mistake or a boo boo. She's not better off dead. She has a place and a purpose in this life. Her life has already made such an impact in the lives of so many people. We love her very much. If you wish to reply to this, please do so to Amanda's mom, you can e-mail her at majones@nemonet.com This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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