Follow by Email

Tuesday, January 20, 2015

What's Really Important

There is a news story that has blown up and the whole thing makes me disgusted. A 5 year old child in the UK is being charged for not attending a Birthday party, with the threat of small claims court if they don't pay up. The boy's family had accepted the invitation, but then realized his Grandparents would be visiting and his parents kept him home. The mother of the Birthday boy sent home an invoice for approximately $24.00 to the family who bailed on the party. Is this because the Birthday boy didn't get a gift from that child? Does this Mother not have more important things to worry about? Being the Mother of three, Teale being special needs, I know much about how life can be extremely unpredictable. I've thrown several parties over the years where someone I surely thought and hoped would be there, suddenly bailed. It is life, stuff happens, people forget, sickness occurs, plans get changed.
I may be overly sensitive to the pettiness of this because our life can be so challenging. Also, I only just found out last night that a classmate of my daughter Teale, died over the weekend. A 16 year old boy passing suddenly can rock your heart like nothing else. It makes me wonder if the family of the Birthday boy has never struggled in life? How could anyone not see how incredibly selfish they are being? Does the family regret it now that the story has gone viral and their actions are being questioned by thousands of people? I haven't seen anyone stick up for the Mother who sent home the invoice, although, I'm sure there are some.
As my heart hurts for the family who lost their son at my daughters school, I can't help but wonder why we can't just be kinder to each other? We never know what each other is truly facing in life. I never saw Andrew as a particularly "sick" child. I knew he had diabetes, but his family seemed to be on top of it and as an outsider, he lived with it well. There is no known cause of death yet, but rumors are that he had the flu and complications from diabetes occurred.
Andrew was a boy who was quick with a smile and a hug. It's hard to believe, all of it..... I don't think anyone who has a child in their life, doesn't get the pain that our family and people touched by Andrew feel. The loss of a child is overwhelming, always. It is a universal feeling that a parent should not have to bury their child.
We all have "stuff" in our lives, I don't think "my stuff" is bigger than yours, but it is different. Living the challenges with Teale has changed us, as people and as a family. We know life is precious and very unpredictable. We've almost lost Teale a few times, starting with her unresponsive birth and each time I saw our mortality very clearly.
May we all embrace each other with love and kindness today, because in the end, the only thing important in life is each other. God Bless you Andrew, thank you for the smiles and hugs. You are missed.

Tuesday, January 6, 2015

2012 -2014

December 2012...I barely remember the "goings on" of that year. I know Christmas caught up to us and we let go of a tradition I greatly miss. We didn't condense life into a short letter, we didn't get a picture of our three kids together and we didn't stay up late into the night hand addressing envelopes and sending them near and far. I remember Teale being sent to the hospital emergency room for what looked like a shingles outbreak. She woke with a scab, oozing on her eye lid. Luckily my relationship with my pediatrician is quite close and I texted him a picture of it right away. His response was a bit shocking and we were off to the hospital. If it was shingles, she could lose vision and Teale already being legally blind, could not afford that. We spent the entire day at the hospital, she and I. Mark had to work, so a dear friend came and helped me pass the time with Teale. I was reminded several times that day how loved our family is. Prayers & help was offered over and over again. I received texts, calls, Facebook messages, e-mails, etc. offering us anything we needed while we waited out Teale's extensive examinations. It was a long day filled with much fear, as doctor after doctor looked at her. Eventually the news was good, it was not shingles but some type of a herpes breakout that just needed an ointment and an antibiotic. A day lost so close to Christmas put me behind even further. Than there was Gwenn, who needed oral surgery to split a double tooth. She had a double baby tooth and the dentist was hopeful the permanent tooth would be normal, but it wasn't. This required a team of dentists to split the tooth and do a root canal. Poor Gwennie was only 9 years old and in a chair with her mouth open for at least five hours. It was a complicated procedure, but she was a champ. Both Mark and I by her side. Another day lost plus the next day she was still worn and stayed home from school. I also had my Mother in law to care for in December of 2012. It would be her last December living with us. Her Parkinson's and Parkinson's Dementia had progressed quite a bit that year and by June I would know she had become too much work for our complicated family. She was very dependent on me, basically doing nothing without my prodding. Our home being a raised ranch, with the main kitchen upstairs and my Mother in law downstairs, it was a constant back and forth to check on her. She didn't get any food or drink for herself anymore. If it was up to her, she would just stay in PJ's 24/7 and sleep or watch TV. Honestly, I'm not sure she would have eaten or had any water if I hadn't been there. Taking in MIL on top of our crazy family was a challenge, but that's how much I love my husband! He needed his Mom safe and practically only trusted me to ensure that, so we moved her in and when the kids were at school, she was my job. I know we expected her to be much more independent when we moved her in, but we quickly discovered she had been "faking" much and really needed way more care than we had realized. The days always went by quickly in December, but since the birth of Teale, they seemed to be even shorter. Teale's Birthday being December 9th has always been tough. We go from Thanksgiving to Teale's Birthday, to Christmas, to New Years, to Gwenn's Birthday on January 13th, barely breathing until we are through them all. I can't even think about Christmas until after Teale's Birthday, so that December I was especially behind. We had thrown Teale a big Birthday party that took up much of the time I had after Thanksgiving. That, along with just the everyday care of a household and three busy kids, plus a needy MIL. Well, you get the idea, Mark wrote a letter, but somehow we never took a Christmas picture of the kids, so a tradition we had started with the birth of Beau, died.
2013 would turn out to be just as bad, if not worse. We threw another huge party for Teale, making 15 gluten free gingerbread houses for her friends to decorate. A few of the kids had Celiac disease, something I also have. I was thankful for my sister who helped me take on this huge project. As we were finishing up the construction of them on Saturday, December 7th for Teale's party on December 8th, Mark's sister called. Their Mom had fallen in the night, badly breaking her arm and was also being diagnosed with pneumonia. She was admitted into a hospital approximately an hour away from our home. At that time we did not know this would be our last week with her. After getting through the party, our efforts turned to Mark's Mom. Within a few days we would learn she was not going to recover. At the same time, I had become quite sick myself, a sinus infection going to my chest. Mark insisted I see our doctor and I was checked for pneumonia too. Needless to say, I could not make the hour drive to see my MIL. (mother in law) My being sick throws the entire balance off in our family. I usually just trudge through, but this was knocking me badly. Mark took time off to care for me and the kids, he also went to see his Mom at the hospital. The diagnosis for me was "just" bronchitis, antibiotics should cure me fast enough, but no, there would be a glitch. I actually started feeling worse on the antibiotic. I started having severe GI issues too, a common side effect of antibiotics for many, so I just kept taking the huge pill, three times a day. After a couple days it finally hit me, maybe it had gluten in it? I am Celiac and can not have gluten, whenever I pick up a prescription, I ask the pharmacy to check it for gluten, but because I was so sick, Mark had picked it up. Sure enough, a few phone calls later I found out I had been taking an antibiotic that contained gluten. When I accidentally get "gluten ~ ised" I can have many different symptoms, achy muscles, headaches or migraines, diarrhea, vomiting, it messes with my entire system because Celiac is an autoimmune disease. Anyway, a couple days of ingesting gluten did just that, it made me feel better in my chest, but I had flu like symptoms without a fever. By Tuesday, Mark's Moms recovery seemed dismal. We learned the Parkinson's had taken over her throat muscles and she was not able to swallow correctly. She lived for food, after all there was little else enjoyable in her life at that point. Her ability to carry on conversation had been gone for quite some time, reading was confusing, doing her beloved crossword puzzles had ceased, even just walking was difficult. Ellie senior was almost 86 years old, her mind and her body were shutting down. The doctors told the family that even if she did recover, it would be a constant cycle with her now, pneumonia, that is. Because she was swallowing incorrectly, the pneumonia would come back, not might, would and she would suffer this repeatedly. By Wednesday we knew we were going to lose Mom. It was a fast decline from, at first, just seeming to be a badly broken arm. By Friday at 11:30AM, she was gone. Mark and I there at her side, as she slipped away. I can only speak for myself on this, (and a little for my husband, as we talk extensively) it was an honor and a privilege to be there. She had become family in those years living with us. Yes, I had been married to Mark over 24 years when his Mom passed, but it wasn't until those years living with us, did I finally embrace her and visa versa. No one was good enough for her kids, so I had not had a chance in hell, but something changed between us in those twilight years of her life. We grew to truly love each other, it was a God thing, He had created the circumstances that helped Mom and I to heal before she passed. I have no regrets of that time in our life, Mom being here in our care was and always will be one of the best things I have ever done. My kids and I all learned much from that experience and my husband was, and is, eternally grateful for that time. Gods plan had been perfect...
The memorial service for Mom would be the following Saturday, December 21st. Mark had barely been to work the week of my illness, his Mom's decline and now with her death, he would have the week off. Christmas plans were being shoved further aside, so we could give Mom a proper memorial service. We also hoped to spend time with the family that came into town for the service. All went off beautifully, not without drama, but it all worked out in the end. So, once again in 2013, the Christmas letter and picture never happened.
2014 has slipped by too. Teale had been in one of her most horrific bi-polar cycles most of November and the earlier part of December. Her behavior was so "off" we were barely surviving her. Explosions were odd and harsh, her quick changes in temperament made us question everything from sickness to seizures. We were in touch with her team of doctors and we saw each of them, plus her neurologist, just not sure what was going on. She had strange staring spells before the rages, she was self injurious very often at home, biting her arm so much, there were scabs and bruises on top of each other. It was just heartbreaking to watch. Teale is much bigger than me, in both height and weight and because she has no filter when ragging, I am in extreme danger. Mark felt the need to protect me during much of this awful time while I worked with the medical team to get "our Teale" back. By the time we finally came to the conclusion that Teale was manic due to her medicine levels being too low, we were well into December. The increase kicked in just in time for Christmas break, but the weeks leading up to that were really awful! As of December 19th, I had not shopped for Christmas at all. Somehow though, it always works out. I had decorated, put up the tree and hung the ornaments, plus put out all my other decorations on my own. Mark and Beau carried the boxes to me from the crawlspace, but otherwise, the family really did not help. We were sadly broke and were not even sure how to pay for Christmas gifts, when a couple miracles happened, unexpected money appeared. So on that Friday before break, I shopped late into the night and by Sunday night I was in the best shape, ahead of Christmas, I had been in in many years. I wrapped on Monday and Tuesday, evaluating the gifts and filled any gaps. I was going to get to bed at a decent hour on Christmas Eve after our celebration with my family. It sure felt good to be so ready! I was able to enjoy a few days and not be so stressed out, except for the fact, I had not done Christmas cards, again! That hung heavy over me, but not heavy enough to force myself to do them. This year I still plan on catching up, yes, it is past Christmas and even past New Years, but my desire to get back into that tradition has not faded, so, although they will no longer be Christmas cards, I do plan on getting out cards to loved ones near and far...