Put yourself first…

What I wish for every graduate, every year is the chance to spread his/her wings and find a passion and become the best they can… so many will not. They won’t give it a sincere chance. They will settle; fall back on what feels comfortable.  Some will be held back by the people who love them the most. It is scary to let your kids go. I have told my daughter she can go to any college she wants as long as it is in a 50 mile radius of home. There are plenty of great opportunities right here around us. My son attends one of the best engineering schools in the world. It happens to be 25 miles away from home. But my daughter has chosen to go 30 hours from home. Gulp. My husband moved 18 hours from home when he graduated from college.  He never returned home. He met me, and we built a life in the town I grew up in. I did not intend to live here my whole life- it just happened. We don’t have any regrets. We envision our kids moving far from home someday. I’m excited about my kids meeting new friends.  I’m thankful they aren’t involved in any love affairs at the moment. So many people settle on a bad or mediocre relationship because it is scary to be alone.  Some people will use finances as an excuse not to pursue their dreams. Others will have children at a young age, and priorities will and should change, but obtaining your goals and dreams will be harder. My best advice is to use this time after high school as an opportunity to be all about yourself. As selfish as it sounds, put yourself first! Go and do what you want to do. Live your dreams; follow your passion; learn to love yourself. Give yourself a chance.

Be the best you can be to yourself and then, and only then, will you be able to give it your all. You will be at your best, and a great job, great friendships, a great relationship will likely follow. Dream big and put yourself first!

Cautiously optimistic. ..

Friday night was an important event for the Senior girls at our high school. Dave and Molly had to be there, and I wanted/needed to be there too. Part of the afternoon was getting ready for the extravaganza -the Senior girls get their hair, nails and make-up done, and they wear fancy formals.  I was torn about leaving Jake. My dad offered to come stay with him, but I knew it would be a long, uncomfortable night for my dad in the hospital. After midnight, I finally resigned that I would make a final decision later that morning, and I could run home and help Molly get ready,  but miss the event if needed. I slept in the hospital again in Jake’s room. He didn’t feel well. The chemo had made his mouth, throat and esophagus sore. The pain killers made him hallucinate.  I woke up hearing voices. A doctor and my dad had just come into the room. The doctor was especially happy. We are starting to see neutrophils in Jake’s blood! It was the greatest news possible. My dad had decided that he would stay all night even if I came  back. I headed for home after the head oncologist stopped by for a visit. He was unusually happy as well. Previously, we barely saw him. He’s been Jake’s doctor since 2012, but it was just this transplant stay where he really opened up. He was always watching Jake’s progress through the meningitis and leukemia,  but he didn’t visit.  If he did, he didn’t say much. This time was different. He was letting bits and pieces out that were probably best kept to himself until now. This being his first NK cell deficiency transplant, he was nervous.  He didn’t know what to expect when Molly’s stem cells entered Jake’s body. He waited anxiously for an autoimmune response, a reaction, illness or rejection. Jake had normal side effects. His body quietly, without incident, accepted his sister’s cells. The stem cells found their way to their new home, got settled in, and started multiplying. That’s why everyone was so happy. New neutrophils ( white blood cells )   were showing up in Jake’s blood! I felt good about leaving him with my dad for the night. We had an awesome night with our daughter.  Today, on Mother’s Day, his cell count went from .3 to 1.7. With cautious optimism, they expect those numbers to grow exponentially.  This coming weekend, they may start making plans for discharge…

Learning Fair…

When Jake was in elementary school, there were quite a few projects the students had to complete at home for the Learning Fair in May. When I taught there, my students completed projects in class- accordion poetry books, salt clay topography maps of the USA… As creative and crafty as I was, I resented Jake’s projects.  He had no interest in doing them, and I felt like they should have been done in school.  No matter how grand mine was, it would not compare to what Collins’ dad would make. That dad was the BOMB! The Learning Fair was a competition among parents.  It started in the first grade when I built a replica of the courthouse. The following year, Molly asked for some paint and glitter glue. She had a hand full of plastic ocean animals from the upstairs bathtub. What are you doing?  “I am making an ocean diorama for the Learning Fair,”  Now wait a minute… She didn’t ask for my help; she didn’t want my help. Are the other mom’s and dad’s helping? She shrugged. She didn’t care. She absolutely did not want my help on her diorama.  I bit my tongue. I grimaced as I pictured it being displayed among the grand designs of the other parents. At least everyone, especially her teacher, would know that Molly had done it all by herself, right? To my surprise, Molly’s project blended in just fine. I stood there and beamed with pride. Not only did it look just fine, it looked like a first grader did it. Most of them looked like they were done by a first grader. I resigned myself to never being able to out-do Collins’ dad- he’s a great guy, and I looked forward to his achievements.  He and his son hopefully had a great time making them. I continued to help Jake on his “artsy crafts” when he asked. It was not his cup of tea, and I understood his frustration. Molly never asked me for any help on any project- her fierce independence. They might not have been the best, but they were hers. She is working on her Valedictorian speech. I will not see it or hear it until she delivers it during graduation…

Bloom and grow…

When Molly was a little girl she would zig when I wanted her to zag. I tried to fix healthy meals, and one night when she was 3, I put dinner on the table. Would somebody get me a damn Happy Meal? We have her on video crying over eating carrots. This went on so long, when we asked her why she was crying, she wailed, I don’t know… I told Dave that I refused to spend my life fighting with her. I started choosing my battles. I got pretty good at it- I learned to give her choices- I would pick out 2 or 3 outcomes acceptable to me, and then I would say, “Molly would you like this or that?” It gave her a sense of control. She is the second child, and was born with her personality.  She looked like Jake, but her personality was very different. I was not about to compare them or force her to be like her brother. Truth is- she is a mini-me, and I was going to nourish and foster that strong- willed personality.  If I didn’t like her outfit or hair, I told her she looked nice anyway. Then in public I would say, “Molly picked out her outfit today! Doesn’t she look nice?” It sounded sincere,  but assured the other party that I did not dress my kid like that. When I see those kids in public, I always compliment their sense of style.  A group of Daisy Scouts visited Build a Bear. Of course my kid immediately picked out the ugliest bear possible and a camouflaged boy outfit for it. What are you going to name him, Molly? Did you consider the rainbow unicorn? We would both laugh. I watched the other moms guide their daughters into picking out the bear and outfit they liked. Another little girl followed Molly’s cue. Her mom and she proceeded to argue, and I think the other mom finally relented. She came over to me. “You are such a good Mommy. How can you do it? How can you stay so calm?” I smiled and shrugged my shoulders, I don’t sweat the small stuff. What I was thinking is I want her to have good self-esteem, I don’t want her to be co-dependent on a controlling mother.  I used to zig when my mom made it clear she wanted me to zag.  It was a sport to me that I not only enjoyed, but was good at. Ironically, it made my mom and I closer than ever.  She realized that my style, opinion, taste could be different than hers, yet turn out ok – she often loved my style.  Molly is leaving us this fall to go to college 30 hours away from home. I will miss her fiercely, but I feel very sure that I made the right decision a long time ago to let her bloom and grow on her terms…

Facebook…

I’m an open book. You can ask me anything, and I will likely tell you way more than you wanted to hear. What was your original question?  I started posting on Facebook about Jake’s condition to dispel some ugly rumors going around. People were sending me posts circulating on FB. There is a student with meningitis, and the school is covering it up. They are covering it up because he’s the principal ‘ s kid. Yeah they think the rules don’t apply to them. I’m pulling my
kid out of school. They should shut down all the schools. I heard the public health department is part of the cover up. If they lived on the west side of town, it would be all over the news….  At first, I tried to educate the general public about meningitis. It’s not always contagious. (Jake wasn’t contagious for one second.) My husband would never put kids at risk. Then I started receiving posts of prayer and encouragement. The prayers are what kept me posting. I was hearing from people from all over the place.  I didn’t feel so alone. I heard from people from my childhood that I hadn’t seen for over 30 years. I wanted to stop rumors, but I gained so much more. I shared info with the parents’ group at my son’s college. I now have friends all over the country.
My friend made a “Meal Train” page to keep my family fed. Sometimes I will go to the high school, and people I have known for years won’t even bother to say hello. Others race over to give me a hug. I haven’t been home a lot the past 2 years, and this hospital is lonely. Facebook has allowed me to vent, share, make connections, and know we are not alone. It has given us the power of prayer. Some people avoid social media like the plague….for me, it’s been my lifeline. ..

Chuck Taylor’s

Tomorrow night my daughter will get all dressed up in a sparkly, sequined $500.00 dress for the last time in her high school career. We’ll get her nails done, her hair done, buy flowers…this is the 2nd time in two weeks for this kind of hoopla. I am glad for this chapter to be over. I didn’t enjoy it when I was in high school, and I’m still proud to say that my wedding dress was on the sale rack and cost $250.00. Spending money frivolously is not my cup of tea. My daughter spared me from the frilly dresses and pageants when she was little because she wanted to dress like a boy. She won’t admit it, but she idolized her older brother. Before the age of 3, she wanted to wear his clothes. At first it was cute, but they were too big and not always appropriate.  Molly, get dressed- we have to go… “Ummm, my name’s Mason, and I am dressed,”….Ummm, no, you can’t wear that outfit to (_________). Wherever- fill in the blank. Grandma was going with us and she was going to flip out. Being the 2nd child, and much like her mother, there was a protest and a fight I  couldn’t win. You could threaten, yell, cry, beg, bargain, but she wouldn’t budge. I started buying her clothes only with her approval. I tried to get anything unisex possible.  She would want to see exactly where it came from. I would have to prove it was the boys’ department.  She would have to see it being modeled by a boy in the catalog before she approved. Then she wanted her hair cut. Short. I cant do it, my beautician told me. I took her to JC Penney ‘ s and, she got it cut off. I found a pair of red Ked’s tennis shoes that she agreed to wear. I especially liked them with her Old Navy flag boxers and flag shirt. Everyday I told her she looked nice and that I loved her. My mom cringed, said I would spank her, but kept her mouth shut (for the most part). One of my junior high students passed her one day and stopped in his tracks, “Dude! Look at those Chuck Taylor’s!  Awesome!” He was referring to her little red shoes. We were both proud. Eventually her phase passed, and she wore skirts almost everyday in high school. I chose to bite my tongue, and I chose to not fight with my daughter every morning about her wardrobe. She has her own sense of style and hopefully good self esteem. The other day she asked if she could buy some red Chuck Taylor’s for college. Absolutely!

Don’t give up…

So my daughter was transfered to a larger hospital in a bigger city with the capability to test if her seizures were true or pseudo. I certainly did not hope for epilepsy, but I wanted answers. Luckily it was just a 24 hour test. She had two “seizures”. The doctors determined she did not have epilepsy. There was no obvious cause, and she was evaluated by the psychologist. No concerns psychologically. Nothing. She was released with no answers. The “spells ” as we now called them continued. She was reported to the DMV and had to stop driver’s education and continued to have headaches. I took her to the local clinic. The nurse practitioner listened empathetically- we considered hormones, migraines,  stress. She thought they were tension headaches.  She reviewed the notes from the big hospital. Oh honey, there’s nothing I can do… the notes ended with the suggestion my daughter see a psychiatrist!  They failed to mention this.  “Well kiddo, we’re going to see a psychiatrist.” And we did. After a session with Molly, I was called in. I see absolutely no concerns whatsoever. What brought you here? We ended up having a lovely conversation about his own daughter’s experience with headaches. He suggested Mt. DEW. Her life was interrupted daily with headaches and spells. I took her to a pediatric neurologist in a different hospital. There is nothing I can recommend other than over-the-counter pain relievers. I tried magnesium lotion, caffeine, massage, and was considering other options when in a moment of complete desperation and exasperation, chiropractor popped into my head. I called one within walking distance of the high school. Within the first few visits, she had relief from the headaches. It made me nervous so I decided to undergo treatments as well. It took a little while, but her spells stopped and my back pain was gone. We later determined the probable cause of her problem. Earlier that summer, she was in an accident that resulted in double whiplash.  I took her to a doctor, and she was prescribed a muscle relaxant.  A couple of months later, she was catching for her softball team and zigged when the ball zagged. Mom, I felt and heard my neck pop. I didn’t put much thought into it- she was always twisting or pulling something. I think we had her examined, but nothing showed up on the x-ray, and again muscle relaxants were prescribed. We still had some left over. Her headaches started within a month, but I did not make the connection or mention it to any doctor. Despite my own herniated disk many years before that made me literally want to die, I did not consider or take seriously her neck injuries.  Like many other people,  if it doesn’t show up on an x-ray or blood test; there is no fever or other obvious sign, is the patient just making it up? Is it an addict just looking for pain killers? Is she just seeking attention?  My experience with my daughter gave me insight and wisdom for my experience with Jake. How frustrating to know something was wrong, but not find any answers. When answers weren’t obvious- we certainly wouldn’t recommend alternative choices like a chiropractor -let’s let the psychiatrist determine if she’s crazy. Listen to your body, listen to your instincts, be polite, but don’t give up!  Don’t ever give up…

I’m no Barbara. …

When I was a little girl, I was drawn to an older lady named Barbara. Barbara is still living, and I was lucky to see her recently.  She always had a smile, always happy to see me, always interested in what I was doing, and just so genuinely nice. We would trick-or-treat at her beautiful old farmhouse. “Come in! Let me see you! Isn’t that darling!” She just always made me feel so good! At 90 something, she still does. Why can’t we all be so nice to one another? Why is it so hard for some of us to be genuinely happy for others? Me included. I want nothing more than to be like Barbara. I would have to make a concerted effort though. I don’t always have nice thoughts. I have come a long way, but I’m no Barbara. I definitely have my moments when I have to vent to get over something.  I have a few people who know this, but love me anyway. They know how to listen, support me, soothe me and let me get over it. Thank goodness for them. I can actually move on and forgive someone who’s been a jerk to me. I don’t want to go through life holding grudges and  harboring
hate. Some people thrive on the drama; it consumes their entire being. They are miserable

. They would never be able to say to someone else anything good. Are they insecure, in pain, jealous, hurt? We won’t know because they don’t even know why they can’t be happy for someone else. They find temporary joy in the failings or misery of others. They would stab you in the back at any given moment. Oh how the world needs more Barbara’s! I have realized that my life changed 100% for the better when I learned to say, “I’m sorry”. My world is 100% better when I smile and say  “hello”. My kids will be 100% more confident when I can say, “good job!” to the kid who did better than my own. We don’t achieve happiness or greatness or peace of mind when we tear others down. We can get those things by being genuinely happy for other people’s accomplishments and good fortune. I have to work a little harder than Barbara to show happiness towards my fellow man, but dang, do I feel good when I do…

Seizures

Jake wasn’t the first kid we followed in an ambulance. The year before Jake got sick, our daughter had a trying year as well. I was called to come get Molly from school. She had the “worst headache of her life “. I called her PCP- take her to the ER. For us the ER costs a minimum of $150.00. It seemed a little dramatic for a headache.  She didn’t seem too bad, but they did a cat scan. There is no sign of a tumor. Ok- whoa- that hadn’t even crossed my mind. I think they said to try over-the-counter pain relievers. I hoped it would pass.  She continued to have headaches and within a month was having seizure- like spells. I took her to her PCP. Could it be hormonal? Stress?  Anxiety? No answers. I started to consider a neurologist. I posted something on Facebook and got some ideas. Before she could have her first appointment,  she was sleeping in my bed, started vomiting and had a seizure that lasted longer than any of the other ones.  It was 11 pm. We called an ambulance…

Fairhaven…

Today a representative stopped by to make sure I had found temporary housing. Jake is required to live near the hospital for 4 weeks after discharge. Jake will be in the hospital for six weeks. It won’t be our first or shortest hospital stay. We’ve slept on recliners many restless nights. If Jake is able to sleep, we are snoring and disturb him. We were elated to hear there was housing available for us for free. A 50.00/ night hotel room would be 1500.00 a month… unfortunately the free housing had waiting lists. It would be a bed, but the bathroom, kitchen and living room were shared. I started to use my detective skills. I called insurance and was told we DID NOT have coverage for lodging.  I started calling apartment complexes that offered furnished apartments.  I scoured Craigslist.  I spent 4 restless days calling, emailing and texting to try to find temporary housing. I narrowed it down to 4, and my dad was going to accompany me. You can’t just meet someone off Craigslist.  I received a phone call from Susie. Her husband was concerned that she was meeting someone from Craigslist too. She wanted to hear my voice. Turns out, she is familiar with our high school and knows Tanner, my Elvis singer from my mom’s funeral. So we giggled about our fears and met. I chose not to look at the other apartments.  This one was closest to the hospital and by a beautiful downtown canal.  I wanted something nice for Jake to come home. I called my insurance company one more time. This time I was transfered to the medical department,  and yes, we have a $5000.00 allowance for housing and transportation. The Fairhaven lady stopped by and seemed interested in my plight and resourcefulness.  I told her that we need an endowment or at least a relationship with some of the nearby apartment managers. There were other apartments other than Susie ‘ s that needed sublet. These apartments are less expensive than the hotels. I don’t know if it will make a difference, but maybe someone could help someone in the future. People come here from all over the world. They need a place to lay their head at night…