Changes & Blessings, part 8

I scooped up the box from the front porch & put it in an inconspicuous place in our garage. We would wait until a good moment to open it. A moment with the family all nearby, a moment when Teale was in a good place to accept the gift in all the love it was meant. It would be a couple evenings later before the evening was free of clutter. I called everyone together, explaining to Beau and Gwenn they will want to see Teale's reaction to this gift. I gave them a little background information and then we helped Teale to open the giant box. As she dove into the pink packing peanuts I video taped her reaction. My new iPhone in hand, I taped as she giggled her way through the packaging peanuts. I knew I wanted to capture the moments not only for myself, but mostly for Michelle and Meaghan. I planned on posting it to my Facebook page to share the story, to share the love, to show the generosity of Michelle and her family. I knew Michelle was not looking for praise from others in her generosity, I knew it was sincere and could be kept silent. But my heart told me by sharing we would touch others, by sharing the whole amazing story, someone, somewhere would also "pass it forward" and change a persons life in some way. The opening of the doll was entertaining and also touching. There were moments of joy and moments of confusion. The tape captures some of Teale's struggles and much of her humor and joy too.  When you see her OCD behavior shine through because the packaging peanuts are all over and the mess is too much for her. Her laughter as her Dad doesn't understand how to remove the hairnet from the doll. At one point Teale asks if my friend died, in such a joyous moment it is such a strange question. I have often wondered about that question, was it just because like she couldn't grasp why someone did this for her? I believe she has a depth of spirituality we do not understand and although the question is shocking to us, my bet is that there is a deeper meaning to it that we don't understand. Maybe Teale sees angels who help her and bring her joy and she thinks the angels brought the doll? Anyway, the video says far more than my words could ever say. My favorite moment was when she leans back in complete disbelief and joy as she discovers the doll. Teale shows happiness like no one else I have ever known. The doll has bonded us with a family who I am proud to know. It taught us and many others that giving is indeed far better than receiving....Now, go pay it forward...

P.S. The video would not upload at this time. I will work on it and hope to share it soon...

Changes & Blessings, part 7

I decided to just explain to my high school acquaintance that Teale didn't have one of the dolls she so coveted. That we just couldn't afford them and so a gift from American Girl Doll, although a very sweet gesture, just didn't make sense. She wasn't giving up that easily, Michelle said her daughter and her really wanted to do this. Michelle's daughter, Meaghan, had received many gift cards from her Birthday and with their living so close to NYC they often visited the AG store. They wanted to send Teale a doll! My heart jumped at the thought, all I could imagine was Teale's excitement when she opened that package. I was overwhelmed by the generosity, touched by the kindness and quit frankly confused on how to handle this. It just seemed so greedy, so wrong to accept such a large gift from someone I barely knew. At the same time, my heart was filled, I just couldn't believe the kindness in the world. I thought about how I could share this story, how from sharing it, it would touch more lives. The social media had brought us together, we had a second chance at friendship. Michelle was known to be a sweetheart in high school, but I really never had hung with her. She dated a boy for most of high school and I believe that had much baring on who she hung out with. I actually left high school shortly after Christmas break my senior year. I had fulfilled most of my credits to graduate and was just sick of the everyday routine. My guidance counsellor set me up with the local community college to fulfill my final credit and I took that class at night. As luck would have it I also landed a live in Nanny job for that semester, so suddenly my high school career was done. I would still walk at my high school ceremony, graduating with my class, but I never returned to classes at my high school. I was just ready to move on and the opportunity I ended up in as a Nanny are still some of my favorite memories of my lifetime. The family and I really hit it off and I loved living with them. But my decision to leave high school early meant I missed out on the most fun semester of a persons high school career. I have very little regrets, but every once in a while I wonder what I missed. I only bring this up because I may have missed opportunities to become close to people like Michelle had I stayed in high school that last semester. Her reaching out to me and my daughter was a second chance for both of us, something Facebook really deserves a lot of credit for in my life. I have made many connections, found out many people who have children with special needs or not have followed my family, learning along the way. People often reach out to me privately about their families struggles too. The networking of special needs families tends to be tight anyway in a community but because I am so open about our life here and on Facebook, I have connected with many. People often reach out to us in good and bad times, but Michelle's offer was unique. Not because of the dollar amount attached to it, but because of the sincerity it was given in. Michelle knew she could not solve all the struggles Teale and my family went through, but she wanted to give some joy to all of us. I graciously accepted her offer and the package arrived later that week. Many strange "God whispers" happened that week before the package came though. One time I caught Teale on the computer looking at The American Girls websight, she had up a picture of the exact doll Michelle had picked to send Teale. My heart jumped with excitement! Teale said to me once again "Maybe for my Birthday?" as she gazed longingly at the doll on the computer screen. Michelle and I had started texting each other regularly, so I sent her a picture of Teale looking at the doll on the computer. Her response was "It was meant to be." Another day I took the girls to our local library, a regular easy field trip with the two of them. There is a place where a display is set up and changed regularly for the kids. Often it is tied into the seasons of the year or book characters. As luck would have it, it had recently been changed to American Girl dolls! Teale stood staring at the display behind glass, my heart beating a bit faster as I imagined the package on it's way. Again I sent a picture to Michelle, again her response was "Meant to be." Michelle also texting me regulary, sends me updates on where the doll is in the process of shipping. It is an exciting week, as we await the surprise package. I decide to not tell my family to make the packages arrival even more exciting. One day Gwenn comes to me saying there is a big box on the front porch...

Changes & Blessings, part 6

I go to sleep worried, this is my normal, but when it comes to seizures, nights are the most worrisome. I say a prayer, asking God to protect Teale and to wake me quickly if she does have a seizure. With exhaustion setting in after several nights of worry, I pray I wake if Teale needs me. My fears of my sleeping through a seizure are huge. Mark is unlikely to wake, he has never in the past until I have and then alerted him. It's a lot of pressure to live with every night, but I am a faith filled person, so I often look at life as "God's will." He will wake me if Teale needs me. The morning comes and Teale seems much better, maybe "they" were right, it was too high a Lamictal level in her bloodstream. I start to feel more relaxed, we are back to "our normal." Hopeful once again that Teale is safe, that her body will stop fighting itself, my fears are dropping with the passing of time. She continues to cherish the new American Girl catalogs, saying to me, "That was so nice of Leah!" my friend's daughter who gave up the catalogues for Teale. Teale owns some dolls similar to the American Girl dolls, but the cost of them prevents us from buying the "real" thing. Raising a child with multiply disabilities has many hidden costs people would not know or understand from the outside.  We have changed our lifestyle many times for Teale. Giving up things often we thought we would do as a family. We have also done things differently for her sake and the sake of peace. We even changed careers at a pivotal time in our lives. We sent Mark back to college and I quit working altogether to be home for our complicated family. Life with a child who is mentally ill is often about keeping harmony. If something costs more, but for the sake of the family it is worth it, we will do it. These are not extravagant things I am talking about. We do not live on credit. But little things all add up. Our taking two cars to our son's soccer games, in case one of us has to leave with Teale, is a good small example. Teale's need to drive to calm also equals wasted gas. Like I said it's the little things that add up. Anyway, the catalogues to Teale are like a constant wish list. She goes through them asking in Teale language "Maybe for my Birthday?" We always say "Maybe?" Pretty much knowing unless we suddenly come into unfound money, maybe is really a very far off hope. So when I get contacted by an old high school acquaintance asking if she could send Teale a gift from the American Girl store, I am thrown as to how to handle it. She had seen my post on Facebook requesting a catalogue and happened to be visiting the store with her daughter. She said it felt like God talking to her to contact me. We were not close in high school, but she had followed much of my journey on Facebook and through this blog. Teale doesn't own a doll and although the clothes can be purchased for a modest cost, the dolls can not and they are what Teale yearns for. I hesitate as to how to say a gracious no thank you. At some point on this journey with Teale, I had learned when people want to help, you are giving them a gift as well as yourself a gift by accepting. There were times I was too independent, trying to stay too strong in my pain to let others in. Then there was this epiphany. I'm not sure how or when it happened, but I finally realized we were going to need a village to raise this child. I was not gaining anything by being stubborn and strong. I realized maybe this was God's gift in this life. He could not prevent her brain injury and the suffering we all experienced, but He could give us the gift of love along the way.

Welcome Back

Although it has been months & I need to finish my story, I woke today thinking about writing. This I have not given much thought to in months. So, I thought I would explain...

I love the Spring & Summer months out on my porch early in the morning. This Spring came especially early for my area. I was able to sit outside enjoying my morning coffee, watching the birds come to my feeders and soaking in the warmth of the sun. The peace I feel early in the morning is very spiritual for me. It is the solitude that I enjoy. My porch is one of my favorite places and a place that brings me much closeness to my God. Being able to get extra weeks out there was very special this year. The time renews my soul before the days work begins. My life of giving care to others is draining and my porch is where I refill my soul. So my blog stood silent, until today when I finally woke missing writing as much as I had missed my porch over the long Winter months...Welcome back to my crazy, loving, God filled life. I missed you.

Changes & Blessings, part 5

As I drop Gwenn at my friend's house, her daughter agrees to give up her AG catalogues for Teale. Leaving Gwenn in trusted hands, I know I could be hours. Emergency rooms are not very efficient & if Teale isn't seizing we will be low on the priorities. When I get to the hospital the catalogues calm her, she flips through them, excited to have new ones. Because she only uses her left hand, she braces the catalogue under her right arm, the tension shows in her arm. Her arm with cerebral palsy tends to "contract" when she is concentrating hard. It gets tight, bending at the elbow where the IV is in her arm, setting off alarms as the IV gets cut off. The alarm can't be stopped by us, so the nurse comes in to reset it. But over and over again this happens as Teale enjoys flipping through the catalogues. We try to explain why this is suddenly happening to the nurse, but whether she understands or cares I am unsure. All she knows is the alarm keeps going off and it is interrupting her work. I try to help hold the catalogues, so Teale's arm won't contract and cut off the IV, but Teale is independent and strong willed. This could go south badly if we don't come up with a solution. I brought her portable DVD player and DVD's, but she wants nothing to do with it. The nurses request a urine sample to see if she has a UTI or her electrolytes are off. This has gone well the last few times with me, so I'm hopeful I can get it done. I'll spare you the details, but let's just say Teale is a big girl, so trying to get a cup under her is tricky, but I do it. This is the last test, blood has been taken too, so now we just need results. I have been there awhile now and have yet to see a neurologist. Mark tells me he had been told there had been a stroke victim admitted and only one neurologist is on staff right now, so there is little chance we will be seen soon. After talking to a couple people about this and the fact that an EEG will not be administered today, we start to debate leaving. What's the point of sitting there when nothing is being done? The seizure like activity Mark had been seeing has long since stopped. I am frustrated and realize going home may be fine, but things could turn at home. There is nothing worse than leaving, only to have it happen again at home. Teale's doctors had wanted an EEG done because they were concerned. This is where medical care makes no sense to me. Teale's doctors know her, they know us, they should have a say in such matters. ER is it's own domain though, they do what they want, not what your doctor thinks is best. Teale's doctors are texting us, they say they have requested an EEG, but again, the man power in ER is low, so it probably won't happen. They can make a suggestion, but ER does not have to follow through on their suggestion. Mark and I say we want to talk to neurology, so we'll wait. Shortly after our "pushing" to see the neurologist, Teale starts getting agitated. She has waited too long and is "coming out" of whatever had been happening to her body. Her loopy behavior is dissipated and she is becoming our feisty child again. She indicates to Mark and I she is done and wants to go home. At this point we tell the nurse we don't think we can wait to see a neurologist, Teale is  getting anxious, so we want to be released. Ironically the neurologists show up and their opinion is that Teale had been in a Lamictal toxicity from the slight increase we had been advised to do on Friday. I argue this much, as it makes very little sense to me and sounds like a scapegoat. Her blood level had been taken shortly after she took her morning dose of Lamictal. Our protocol is to get a blood draw to check levels first thing in the AM before taking her morning medicine. This is called a trouth blood draw. The level ER took has nothing to be compared too, we don't know what her level is after taking her medicine. Basically it turns into a "whatever" situation. We can't "win" the argument and the one test we had wanted (an EEG) they do not deem neccessary. The advice is to now lower her medicine back down to her original dose. Teale is indicating she wants the IV out, so I ask for the release to be given and to get out the IV out ASAP because my strong willed daughter will pull it out. The staff leaves the room, Mark and I talk to Teale about not ripping out the IV and assure her a nurse will do is soon. But, Teale is Teale and my warnings were not strong enough, so Teale takes her release into her own hands, ripping out her IV. Shortly after we are released, released from many hours of frustration and unanswered questions. This is going to be a long "vacation week" I think as we leave the hospital.

Changes & Blessings, part 4

And I did, I listened most of the night, I woke several times and I slept very little. She made it through without a glitch. I thanked God and our doctors as she walked out of her room the next morning. The "emergency medication" has worked well. We give her a form of valium before she goes to sleep on nights that her seizure threshold is being espially challenged. We now know some of the signs of her being in danger and the valium prevents the seizures when Teale is most venerable. We joke that the other person who needs a valium on these scary nights is me. But of course I need to stay alert and on my game, so I will not even have a glass of wine to settle my nerves on such nights. Mark doesn't or at least never has awoken when Teale is in a seizure in the middle of the night. It has always been my Mother instinct that has suddenly been startled awake to hear the awful sounds. That is one of the many things that I think about when I have been away from home overnight. I always ask Mark to keep the monitor close & to turn the volume up. I have been away from home alone very few times, but the needed breaks are often a catch 22, as the stress of being away is there too. I worry much too much. The day after the seizure was Saturday and all went relatively well. Teale was a bit grumpy and moody, as is often the case the day after a night we have given the valium. She seems unsettled, tired but won't rest. We get through the day and night falls again. I am anxious to get to bed, fatigue from worry and lack of sleep is hitting me hard as the evening comes. We decide to give the valium again as the medication levels have not had enough time to increase. We know this means the next day Teale again will be crabby, moody, tired, but we also know a seizure can be life threatening for a child like Teale. I sleep a bit better, mostly out of exhaustion, my body does what it needs. The monitor still a bit louder than usual, but I am less worried about another seizure coming. Teale wakes early on Sunday, anxious to get out of the house, Mark and she often hit the local grocery store on the weekends together. Mark likes grocery shopping and for the most part so does Teale. He is not gone long when I get a disturbing text "She fell over on someone. We are now upstairs sitting and having breakfast." I call Mark for details and my heart sinks as he describes Teale's strange unsteady behavior. The description sounds neurological to me and I decide to call her pediatricians office. While I gather information and talk to the doctors another text comes in from Mark. Teale has vomited at the store, another neurological sign. Mark now believes Teale is in small multiply seizures and we are quickly directed to get to the emergency room at the hospital. I begin to work out what to do with my daughter Gwenn who is just nine years old. My Mother in law also lives with us and needs care too. A whole day away would mean she would not eat or drink anything on her own. Her ability to take care of herself has declined badly, so I get in touch with Mark's brother asking for help. I need to get to the hospital also. Mark should not have to be alone, ER with Teale is a tough place to be. Teale has vomited on her clothes, she has nothing to keep her occupied while they wait and her behavior in such situations can be extremely challenging. I have already asked for prayers on my Facebook page and friends offer to take Gwenn. Beau is out but I reach him saying I may need help. My kids and I have a deal, no matter where they are, if Teale is in trouble, they want to know. One time Teale had a seizure at church, we had to call an ambulance and Beau was in Sunday school at the time. He just knew in his heart the ambulance was for Teale and he was upset that Mark and I had not pulled him from Sunday school to let him know. So as I spoke calmly to Beau, hoping this was nothing, I knew his fear was probably high also. Uncertainty, it is our life, but in these times it is heightened. Soon after Mark gets to emergency, Teale vomits again, this time all over her treasured American Girl Doll catalogue. She goes into a rage, it is covered with vomit and Mark has to throw out the catalogue. The rage itself is not her normal kind of rage, causing Mark more alarm. Mark asks me to try and locate another catalogue, so  I throw the request on my Facebook page, knowing my dear friends will find me one if at all humanly possible. If there is one thing I have learned through the use of social media is how much people care about my family. It is an amazing thing and it reaches far and wide. I am often overwhelmed by the support and love we receive, both publicly and privately. I have had many relationships forged because I am so open and honest about our struggles. People may not be as willing or as able to share their challenges, but they have told me that they appreciate my sharing our life. It is not always pretty, there are things I have shared that others may find appalling. But it is almost like my calling in this life with Teale. I feel like her life, our lives with her, teach much. It was not very many years ago that you would not have seen a kid like Teale in the community. You would not have know the families pains, joys and challenges raising a child with multiple issues. So sharing our journey both in this blog and on Facebook has been somewhat therapeutic for me. It connects me to people like me and it teaches people who otherwise would not understand. The offers come in on my Facebook page and privately texted to my cell also, many are trying to find me an American Girl catalogue to take to Teale at the hospital. Moments like these that may not mean all that much in an everyday life, but I see the amazing love of those who want to help my daughter. ~to be continued

Something to think about...