Thursday, January 31, 2013
At eleven years old Teale, who is scattered in her mental skills from about 2 years old to age appropriate, depending on the skill, got her first period. It was shocking and yet expected, the signs that it was coming were there. For some reason, God only knows, girls with cerebral palsy often develop faster than typical girls, so we had actually been on alert since she was about 8 years old. We had discussed it with her pediatrician many times and we had some plans on how we would deal with Teale all worked out. We had even seen an endocrinologist and our pediatrician had talked to an OBGYN. It was Summer when she started. Summer, the only time of year she can swim in her pool from The Dream Factory. Summer in Upstate NY is short, we are lucky to get warmth for swimming all of July and August and maybe a few weeks in June and or September. At 11 Teale would swim for hours and hours. It brought her joy and peace, it calmed her soul and also our souls, her family. There is a saying in our home, "when Teale is happy, all seems good in the world." Swimming makes much good! So on the day of her first period luck would have it that we had a graduation party to attend at a neighbor's house, who also had a pool. Sometimes I just shake my head at the things we have to get through. Teale LOVES a good party, she loves swimming and on that day we had hope for fun with neighbors and friends. It is not always easy to take Teale to parties, she can get overwhelmed or think a younger child is staring at her and have a meltdown. Often, Teale is correct, little kids do find her intriguing, but as she gets more and more upset about them looking at her, she becomes even more exciting to look at! It's a horrible catch 22 in our life! This party had promise though, Teale would swim, it was with many neighbors who knew and understood her struggles, kids her age would be around who cared about her, plus Mark and I would be able to enjoy the company of other adults! Our life is so often isolating and back then it was much more so, that a party with other adults was a rare treat. The days twist though put a huge cramp in things. How would we explain to Teale that she could not go swimming? How would we keep her from telling EVERYONE she was bleeding? She was not scared like we had feared, but her openness was somewhat mortifying to her older brother and we worried about her telling his friends also. That was just the beginning of our worries though. We had the worry of how would we deal with this every month without warning, where would Teale be when it happened to her and who would help her? Teale only uses one hand, so her ability to deal alone was impossible, she needed help. She was also talking about it constantly and the embarrassment that this could cause all of us in public was concerning. She hated the feeling of the pads and would rip them off, leaving them just about anywhere. She fought with us about going to the bathroom to check the pad or to replace the one we found hidden under the couch. We worried about clothes, furniture, bedding, the whole situation was a complete nightmare. I was constantly doing laundry and soaking clothes in sinks. I was quite frankly overwhelmed and mad at God, after all, why Teale? It was becoming more and more apparent as she grew that her life would not miraculously change. She would not suddenly be mature enough to be a wife and a mother. My concerns also included the possibility of her being taken advantage of. Her development was just down right terrifying. An 11 year old with the mental capacity of about a 5 year old in most situations. After just days of dealing with this, I knew we needed help. I plead to our pediatrician that this was putting me over the top and I wanted to get Teale on birth control ASAP to control the timing and the length of her cycles. Keeping her out of the pool was all but impossible, keeping my house and belongings safe was also. I felt like God was just messing with us because at the time I just couldn't take much more. Luckily our pediatrician listened to my desperation and we saw an OBGYN. Ironically at the same office I went to and had gone to for all my pregnancies and births. I don't blame my OBGYN office for Teale's botched birth, I blame triage at the hospital she was born at. So, I have continued to go to the same OBGYN and honestly, they treat me very well, maybe because they do have some guilt? Anyway, the appointment was set up and since I had no clue what to expect, I insisted Mark join us. For all I knew there would have to be a physical exam? Luckily that was not the case and still is not to this day. Apparently Teale will not need an exam until she is 21 years old. Well, long story short, Teale was put on BCP and we had many issues with breakthrough bleeding, so some months she bleed at least 14 days of the month. The laundry, the frustration lessened, but it was still very difficult. If you have ever been on BCP, this can happen until your body adjusts, but Teale's never adjusted, so the nightmare continued. Then the OBGYN finally decided to switch pills and after a few months Teale had nothing, no periods! We were thrilled, but concerned if this was healthy? Anxiously, I shared the news with her doctor, fearful she would say we had to find a different prescription. But she was as thrilled as I was and said it was fine! So for years now it has worked, but there are health risks with being on BCP for a long time. Teale has some issues with blood pressure and her weight is high and difficult to maintain with all the medications she is on. This is working, but the concern over how long can we stay status quote and not cause harm is there. This past week I attended her annual OBGYN appointment and I asked the question, can we have Teale sterilized? Heartbreaking, I stood there thinking that I sounded like a monster. I felt transported back to the 1950's when all special needs people were sterilized. I wondered what the doctor and what her "green" intern by her side thought of me. I ached deep inside my core, even though I knew Teale could not handle a pregnancy, a birth or take care of a baby, it hurt beyond my expectations. These are the things Mom's like me have to think about, these are the things that are so unfair about her life. She and I should not have to worry about the outside world, about her being taken advantage of and then our suffering the consequences of that. But quite frankly, I am a realist, I believe in addressing problems proactively, not reactively. I don't want to ever have to make the choice of Teale's life or an innocent baby. I have time, I will not jump on doing anything immediately. I need time to process my pain and this decision correctly. It may take me many years to figure this out. In the meantime, I now know my choices and can ask questions. I also can process my pain, my pain for Teale that she may never fully appreciate the joy of being a mother. My pain for myself that my daughter will never have the chance to hold her own bundle of joy, as I held her. Time is what I need, time to work through these feelings and make the right decision for all.
Wednesday, January 30, 2013
Pain. It creeps into my life at the strangest times. A doctor telling me Teale's weight is too high or a teacher sharing a progress report, which seems to show no progress at all. Things I think I'm "over" can surprise me and I find I am back at the birth, reliving it, aching deep inside my core. I often wonder when I will get at peace with this? When will it not hurt anymore? I recently realized the answer is never. I will never not wish things were different. I will never not wish the doctors had pulled her from me at the first sign of stress. I will never not be mad at myself for not advocating harder in that triage room for Teale's safety. Her life was changed by incompetence, by human error and mostly by pride, a resident trying so hard to prove herself correct, she forgot a baby's life was at stake. She is the one I think about the most in those dark moments when my heart aches so much I think it just might explode. I think about that young, full of knowledge, but not common sense resident who told me I was not in labor because their machines were not picking up my contractions. I wonder where she is now, I even dream about seeing her again and telling her the hell she caused my daughter and my family. I imagine her still practicing medicine, still living her dreams while ours were shattered. I wonder what she remembers. I wonder if she learned from our catastrophe or even thinks about us? When Teale was first born I was apologized to by a few doctors, but not by her. The morning after, with just me in the room, a confused, overwhelmed Mom, the triage doctor, who oversaw that resident, sat in a chair and told me how sorry he was. His face still clear in my memory as I stoically told him his words were not enough. I was medicated, I was in shock and had barely processed the events of the night before, but I knew it was bad. His apology confirmed it, it was human error. I wish that moment never happened because I believe that is possibly the single biggest burden I carry, confirmation. Confirmation that Teale could have been healthier, happier and lived a normal life had they gotten her out of me faster. But it's too late, the past is the past, I need to focus on today, I need to let it go and move forward. Many, many times I have thought those words. I have tried to get at peace by prayer, by talking, by writing, by therapy and even by medications. Friends and family will tell us what a great job we have done, what a Blessing Teale's life is. I have worked hard to let go and move forward. I am human, a am the Mom of a severely challenged child who is growing into a severely challenged adult. I am getting older with her and quite frankly, sometimes I am just worn. The worry for her future is astronomical. Who will love her and care for her like me, after I'm gone? I once heard a horrible saying that only a Mom like I can relate to "Parents of special needs children are the only group of parents that actually hope their children go before them." It's heartbreaking and a truth I have intense difficulty admitting. I fear I could lose her and I fear she will outlive me. I think about our future together. Will I be seventy years old and still trying to care for my sweet Teale? I'm sure this post will bring judgement from others who could never imagine saying and sharing what I have. I also hope it brings peace to someone who finally does not feel alone in their pain. Pain, it can be physical or emotional, with me it is unseen by most, but everyday I struggle to let it go...