When Thomas lived at home I would bring him to church, I would bring all the kids to church. They were young enough to attend what was called “Kidz church” and it was held in the gym. The staff knew Thomas was special needs and would keep the older 3 together and it was really helpful to me. Samantha would go to a program for 3-4 yr olds. This went on for a couple of years until Thomas was too old to attend that program and he would sit with Tommy and Alyssa and I during the traditional service. He would talk; a lot. And he didn’t use a “church voice.” So most Sunday’s at church were interesting with him in attendance. No one ever commented or said anything to us. My church is pretty accommodating of people with special needs.

After Thomas started attending residential school I continued to attend church with the girls. Thomas, being away at school did not attend church anymore. When him and I were together I would ask him if he believed in Jesus and he would always say yes and smile. I would tell him that Jesus loves him and that he died for him and Thomas wouldn’t say anything but he would smile.

During one home visit Thomas told me he sings about God. I froze and said, “What? What do you mean?” Thomas said that the staff at school puts on music about God and he sings to it. I almost fell over; in a good way. I called the school and asked to speak to a staff member during the evening time. I asked them if they play worship music, that Thomas told me they did. The person on the other end of the phone was very nervous and answered, “Yes, we put music on for the kids…”. I quickly said I know it’s Christian music and it’s ok! That we are Christian and I was glad they were playing worship music with Thomas! God found a way to make His presence known even when I couldn’t be there to take Thomas to church. They were having “church” right there; His presence was right there.

When Thomas first moved to his group home here I took him to church with me. It was a scenario I often daydreamed of when he was away at residential. That when he came to live here we would attend church together every Sunday and we would bond and it would be great. Well it didn’t quite work out that way. Thomas talked during the message even louder than when he was younger. He would also complain loudly that he needed a tissue for his nose. One Sunday when I didn’t have a tissue a woman sitting behind us gently tapped my shoulder; holding a tissue. I wanted to hug her. After a few weeks of this I stopped bringing Thomas to church. I was only getting aggravated. He wasn’t disappointed that I stopped bringing him and even said he didn’t want to go when I asked him.

The other night after dinner, Alyssa and Sam and Samantha and I were playing a game. Thomas was walking around and started singing. It was sweet, he wasn’t saying any particular words just singing to his own tune. Then he put both arms up in the air and we all stopped and said, “What are you doing?” Thomas answered, “Jesus, it’s Jesus!” He was worshipping by himself in my house. How great is that? Thomas then said that one of the staff at his house worships with him. I love this. God finds a way, when you think there isn’t a way he uses people who don’t even realize they’re being used to let His love shine through. Thomas is reminded regularly that he is a child of God, that God is to be worshipped and that we sing praise to him. I know who the staff member is who is guiding my son to God. God makes a way.

Just about every Sunday we have our son Thomas over for dinner. Sometimes when I pick him up around mid afternoon we’ll go shopping or if he needs it get him a haircut. This past Sunday he needed a haircut so that’s what we did. The young man who cut his hair was probably not much older than Thomas. He was very polite, patient and just all around good. I was impressed. Some days it’s not easy to give Thomas a haircut and we only get him buzzed, Thomas doesn’t want anything on top like a flip on top. Marc, the name of the barber not only buzzed him, he also shaved Thomas. And then he gave us his card so we could make an appointment next time if we wanted. The shop is on Morningstar Road across from the McDonalds if anyone local is interested.

It’s no secret that Thomas lives in a group home with 7 other male residents about 10 minutes from our house. There are times I wish he still lived at home, like now. Thomas has been going through a med reduction. The nurse Peggy at the group home was convinced that he was on too much medication and a few months ago the psychiatrist started reducing and changing the times of Thomas’ medications. I was quite wary at first, he was on those meds for a reason. But Peggy persisted and gave solid rationales and I said ok. Well my son is doing great! He’s so pleasant to be around and his vocabulary has increased. Thomas is using words in the proper context that he never used before. An example is him asking me if I “enjoyed my dinner.” Thomas never used the word “enjoy” before in his life. Little things like that make you so happy. And him being so pleasant to be around…well you wish things were different. Like that he was living with us. There’s no way we would give up his group home placement; I just wish things could have been so much more typical when it comes to him.

But all things happen for a reason and only God knows the why’s and why not’s to His grand plan of events. I’ll wonder if I’ll ask my Lord and Savior, Jesus Christ questions about Thomas when the day comes that we are face to face. Or will I suddenly gain appreciation and understanding of this life and see how all the pieces fit? Will I even care to ask since being in the presence of the Great I Am will surely be ever so sweet and rewarding and beautiful.

I don’t think I would change anything about Thomas even if I could. I used say I would change him not for me but for him. That Thomas’ life would be easier. But who’s to say that it would be? Who’s to say what Thomas would have been like if he were a typical person. Perhaps Thomas is just the way he’s always supposed to have been.

Thomas is made in God’s image the same as any of us. And God made Thomas; Thomas the same way he made Lelly and Alyssa and Samantha and all of us they way we are. Thomas has many gifts that I know were given to him by the Father so that his life wouldn’t be so hard. Thomas is very resilient, doesn’t mind blood draws and doctors visits and understands when you are being sarcastic. He’s well liked, sweet and all around a nice person. I remember when Thomas was around 10, a social worker at his school told me that Thomas was very well liked by his peers there. That “Thomas is a nice kid; you can just tell and the other kids see that and want to be around him.” I was so happy to hear that. You know your kid and to hear an unsolicited compliment especially when things aren’t ideal totally means the world to you.

Seeing Thomas respond so well to the med reduction makes me feel like we came out the other side. Tommy and I see the difference in him and it’s a wonderful feeling to enjoy being with him. One day at a time.

My Dad’s been gone 2 years now. In some ways it feels like he died yesterday and it other ways it seems like he’s been gone longer. I miss him, I really miss him. In ways I never thought I would miss him. I miss telling him things that he would appreciate. Like how it took me all summer to learn how to ride a motorcycle and pass my road test. He would have gotten a big kick out of that. And telling him about work and the people here. Both students and co workers. I come in contact with very interesting and often entertaining people. When I work the after-school program I often talk to the custodian who takes care of the second floor. He is a very colorful smart character. My dad would have loved to hear about him.

I would love to tell my dad that I love my job, and I’m back in school. I never thought those two things would ever happen and he knew that. I know he knows all things about my life but I would have loved to tell him in person and have him be here.

I miss my dads sense of humor. He loved to laugh, be with us and to tell stories of his life. If you were to tell him something that happened to you he could often relate and had a story to tell in return. Nothing brought a smile to his face faster than me telling him something my kids were doing. I remember one time some years ago I had my dad over for lunch when Lelly was like 4yrs old. She insisted on squeezing the mustard on her sandwich. I couldn’t convince her other wise. Of course there was a ton of mustard all over the place after she was done. My dad still brought that up years later and he still laughed.

My husband recently bought a new motorcycle and had it custom pinstriped. It came out unbelievably gorgeous. On the back of his bike he had the guy write “In memory” of his dad and mine. My dad would have loved that. Seriously.

There’s not a Saturday that I go thrifting that I miss telling him about the people I meet and talk to and my great finds of course. He loved to tell me how his mother went to the thrift shop when he was growing up and about the things she found. When I would score a great deal he would exclaim, “It was a shoppers sky!” He really made me laugh and totally understood my love of the thrift.

Two years and I still cry when I write about him. The mark of a great person.

One of Lelly’s friend’s mother, Lauren passed away early this morning. I was friendly with her, our children went to the same grammar school and we would be invited to barbecue parties back in the day. She was a very nice person. An honest person and she was a great mom to her 3 children. A great mom who didn’t get enough time with those children.

Lelly informed me that Lauren passed away while I was in Shoprite grocery shopping. I felt so so sad. It really hit close to home. Lauren had been ill for the past 3 years or so and Lelly would keep us updated on her condition because she was in and out of the hospital quite a bit.

I’m so sorry and sad that Lauren passed away. That her children have to go through the rest of their childhood and adulthood without their mom. It’s truly unfair. However I know she is with our Lord and Savior Jesus Christ. She has passed over to heaven. That’s what I find comfort in. She’s no longer in any kind of pain, she’s up and about and doing whatever she wants to do. I remember after my father died I read a quote from the late Billy Graham. “We take our last breath on earth and our first breath in heaven.” It’s an amazing image to picture. I imagine my dad and Lauren taking that first breath in heaven and being so full of life, healthy and robust and free of pain.

Every now and then I’m so happy with my profession and the choice I made to return to nursing. As busy as I was today I’m still glad I made the choice to be a nurse.

One of my coworkers was out today. So that left 2 of us to do the work of 3. I have to say it wasn’t that bad. There was a lot of time management that went into getting everything done that had to be done and I wish I had worn sneakers today but at least I didn’t chose to wear heels. I wore low heel boots but sneakers would have definitely been the better choice.

On any regular day I have 6 students who require G tube feeds. Today I took on 3 more to cover the nurse who was out. I thought I would be run ragged but I wasn’t. I allowed extra time to get everyone fed and/or give them a water flush. I remember when I worked in the hospital; day shift. It was horrible, I know now it was just not my scene. I could never get out on time, 10 am meds took freaking forever to get done even when I started early. I know now I should have just left after I put a year in, but I honestly didn’t know where else to go. I thought the hospital was my only place to work. No one ever talked about other nursing jobs. It was weird now that I look back.

Anyway fast forward to today. I was hella busy but it was ok. Even when I assessed one of my students towards the end of the day because his para didn’t like that he was coughing. Cynthia is an excellent para and she wouldn’t have brought the child in to see me unless she had a reason. Sure enough he had a wheeze and congestion and needed a nebulizer treatment.

After that student settled down I get a phone call that another one of my students opened the seal of his G tube. The next thing I know 2 staff are wheeling him in holding the entire G tube that the student managed to pull out. I did what I had to do and put it back. I called his mother who was not surprised that her son pulled it out. This is one of this student’s known moves and he’s quite good at it.

I’m proud of myself for my nursing skills. I’m so so glad I have the confidence to carry out my nursing skills. I had no confidence when I worked at the hospital. I’m doing the same nursing procedures, probably more than when I worked at the hospital. The difference is that here at my school I love what I do. I feel appreciated and usually respected. Not every day is a good day and that’s ok because I know that the one, two or few bad days that inevitably occur don’t define me or my job. Today was a good day, busy but good.

My mom very recently lost her beloved dog, Daisy. Daisy was a rescue dog, her and my dad adopted her as a puppy. She was a boxer/ridgeback mix. A big dog who liked to bark but in essence she was the sweetest thing who only wanted you to pet and pay attention to her. Such a good dog! My mom went out to pick up my nephew from work and William discovered Daisy had passed on. My mom is devastated. While there’s that part of her who is glad Daisy didn’t suffer, she never had the chance to say goodbye as was the case of her previous dogs. The time came for “that” decision for her and my dad, they brought the dog to the vet and said goodbye and even stayed with the dog while the injection was given.

We had to make that horrid decision for our poodle Spike a few years ago. Spike was the best dog, he didn’t really bark, loved to be pet and have attention lavished on him. We loved Spike, we had him since he was a puppy, like 12 weeks old. Daniella was 1year old when I decided we had to get a puppy. Don’t ask about my reasoning at that time. Spike house trained so easy, he was awesome. He used to have these bursts of energy where he would run around the house like a crazy dog, then you’d pick him up and he would just melt in your arms. It was so so cute.

Spike was diagnosed with diabetes and I had to give him daily insulin shots, he was so good and would just stand there until I was done. One night he started acting odd, then he began having seizures. I called the emergency vet and they said to bring him in of course. So off Tommy and I went with Spike. They said his blood sugar kept dropping. I matter how much IV glucose they gave him but they couldn’t tell us why. They said we could keep him overnight and do all sorts of tests and then reevaluate in the morning. Tommy and I said no, no more. Something was obviously very wrong if his blood sugar kept dropping like that. We made the decision no pet owner wants to make and said good bye to him. I’m glad we had that chance to say goodbye. We still talk about what a great dog he was.

We do have 2 dogs again, I insisted we adopt a few months after Spike died. So we adopted another rescue named Lola. She’s a hound mix and a little nuts. She barks incessantly and will bark at the UPS truck, the guys doesn’t even have to stop she goes crazy if he even drives by. God help anyone who brings in a package and Lola saw it being delivered to the front stoop. She will literally attack the box, biting the box and try to tear it up. Crazy hound. These pets do a number on you and you don’t realize how much you love them and how they’re a part of your family until something happens.

I’ve been coloring my hair since I was 16. I wanted to be blonde in the worst way! My original hair color was a light brown/dark blonde and I hated it. I’m still not a fan of it on me. So my mom said she would color my hair when I turned 16 and I could not wait. I loved being light blonde back then, loved it! Then came the perms and big hair was so, so in…the higher the hair the better. I personally never used Aqua Net hair spray to achieve maximum hair height. I used “Stiff stuff” which was a super duper hold hair spray. It was awesome.

My friends all had big hair as well I mean it was the 80’s so yeah. After a while I went a little darker blonde, like in my early to mid 20’s. When life became a little more serious, college, graduating, taking my nursing boards, landing my first job in a hospital, then getting married… I spent less time on my hair color back then. Life was busy.

Then I discovered other colors I could dye my hair, wow! I went red, light red, dark red, mahogany red. I really enjoyed my red phase. Actually I went in and out of a red phase for quite some years. I tried every drug store brand/color. Except brunette, I colored my hair a fairly dark shade of brown and it was too much, like it aged me. Needless to say I didn’t like it so I went lighter again. I never really did highlights. Here and there I would play around with a kit from L’Oréal that you could do moderate highlights and that was cool. And then I was blonde again. Tommy says he could go out for a gallon of milk and when he returned home my hair would be a different color. Haha.

Then I discovered that I like my hair varying lengths. I’ve had every length. Long, medium, a bob, short then grew it out long again to long; swore I wouldn’t cut it short again because growing it out again just sucks. Then cut it short again that’s where we are now.

Within the past 2 years or so I’ve discovered other non traditional colors, like pink. Last year I was very pink like a dark fuscia almost and then my stylist asked if she could cut it any way she wanted, so I said yes! And I ended up with this super short pixie cut. That was fun for a while but I wasn’t crazy about how super short it was. Now I guess what I have is a long pixie cut, the sides are very short and shaved underneath and the top is longer. Sometimes I think about growing it out again but the reality of it snaps me right back into it place. I went to have my hair “done” yesterday and we continued with dark pink roots, I’ll probably keep this for a little while…or change it next time. You never know!

I work at a school for students with special needs. The needs vary with each student. Most of the students I see are medically fragile. They have gastrostomy tubes ( that’s how they get their nutrition), seizure disorders, in wheelchairs, and have multiple physical and developmental disorders and they require nursing care. And I give such care with joy. Yes, joy. It’s my pleasure to be trusted with the care of these students. Yesterday one of the students I care for who is non verbal and multiply disabled smiled at me. It was amazing. I’ve been taking care of this student since I began working here over two years ago. He always turns his head to me when I come in to hook up his gastrostomy feed and I always say hello to him by name or “hey buddy.” His mom recently thanked me for taking “good care” of her son. It meant so much and I really appreciated her words.

Then today happens… administration every so often allows parents to attend school safety meetings. We usually discuss school policies or fire drill procedures, who responds to what and where. Today the meeting leader discussed calling 911 in the event of a student having a seizure. Now you have to understand we have students who have short seizures every day. Is it pleasant? No. Is it scary? Sometimes. Do we have rules to follow? Absolutely. And no one argues with the rules. However along with the rules comes the judgment of the nurse who is caring for that student. The nurse is the one who determines when to call 911. So while during the safety meeting there was a discussion of a hypothetical situation of a student having a seizure, that anyone has the ability to call 911 just hand the phone over the nurse. As a rule we call 911 if a student is seizing for five minutes. This is for any student who has a known seizure disorder. The meeting leader mentioned that some students could be seizing off and on for longer than five minutes. That they recover from one seizure, are conscious and then go into another seizure. This can go on for over 5 minutes. One parent who attended the safety meeting pointed her finger at me (the only nurse attending the meeting) and declared loudly that if her child had a seizure at school she had BETTER be called right away, even before we called 911. She was so nasty, her words and attitude were totally unnecessary. I sat there in disbelief as to why this person would feel the need to be so rude and attack someone who comes in contact with her child. Turns out I was told she came into the meeting with a chip on her shoulder, wanting to stir things up. I don’t take what she said personally, I could have been any nurse sitting there.

I am the mother of a special needs child. I get it. I do. I’ve lost my shit on plenty of people who would not see the light. IEP meetings, advocating for my son to be treated appropriately by know-nothing doctors. But school? Nope. Never once had I ever talked down to anyone that came in contact with my son at school. His PT/OT and speech staff were amazing people who only wanted the best for my son. Wanted him to reach the goals they set for him. The nurses who worked at every school he attended whether it be a regular day program or residential school were nothing but caring and professional and I treated them as such. This woman and her crappy attitude really irks me.

I should probably be grammatically correct and title this “My Children” but I see them as older than children so I call them “kids.” I have 4 children as many of you know. One boy and three girls. Thomas is our oldest at 23 years then Alyssa 21 years, Lelly 18 years and Samantha bringing up the rear at 13 years. The first 3 were relatively close in age. Two years between Thomas and Alyssa. That spacing was difficult. We had no idea what we were facing in the future with Thomas and by the time I had Alyssa he was in full hitting and throwing mode. So I spent a lot of Alyssa’s babyhood protecting her from Thomas. Then we decided to have Lelly.

I was 8+ months pregnant with Lelly when we moved back here from NJ. Fun times I tell you. I’m not sorry we did things the way we did, it all worked out, thanks be to God. Thomas was turning 5 at that time. Still hitting, throwing anything he could and having intense long tantrums. We all survived. I remember those years as being extremely hard, like life was just hard. Trying to figure out Thomas, getting the run around from the many doctors and specialists we saw, the disbelief from the pediatrician…it was all too much. I never thought of myself at a mother that children would want to be around.

This past week Alyssa and Lelly were reminiscing about their early school years. Alyssa talked about how she cried on her first days of school because she didn’t want to be somewhere without me. I was so touched I never knew that. I never saw myself as the mom my kids would miss when they were away from me. Lelly also shared how she would go to the school nurse and say she didn’t feel well so I would come pick her up from school. Because she wanted to be with me. Alyssa recently traveled to San Francisco with her boyfriend, Sam. She said “I’m still like that mom! When Sam and I landed right away I felt like I missed you.” I tell you I am floored and honored that my girls feel that way about me. It’s like I was given a gift from them. A gift that has no measure.

I always thought I was the ultra stressed out mom because of what we went through with Thomas. I seriously never knew I was the mom I had wanted to be but thought it was impossible for me to be. The mom who’s kids wanted to be around, the mom who’s daughter cried over being separated, the mom who’s child lied to the nurse so she could go home and be with her. I love my gift.

I’ve belonged to online support groups since Thomas received his first diagnosis. I found other parents who’s child had the same diagnosis and I was hooked. The support, friendship and knowledge gained from that group was invaluable and amazing. So amazing it’s difficult to describe what these women meant to me then and mean to me now. I found a very dear friend, Diane who lived in Long Island. I was so excited to see her screen name contain “NY” when we first met online. We did manage to meet in person, in Manhattan one very, very snowy day. It was incredible, without seeing a picture of each other we somehow recognized each other at Grand Central and just hugged. So sweet. She even met me at the hospital we used for Thomas in Long Island. I had to bring him in through the ER one New Year’s Eve and Diane met me there. Such a great friend ❤️.

I also was fortunate enough to meet other women from that group. A bunch of us went to a conference in Los Angeles. We came from all over the US and Canada! We made arrangements to share a hotel room without knowing each other outside of our online friendships. We talked on the phone but that was it. Let me tell you it was awesome! I met one of my closest friends ever that weekend. Her name is Jackie and she lives in Wisconsin. We text and Facebook a lot and when we have the time we’ll catch up on the phone. I always say we were meant to be friends, our sons were merely the catalyst and our way of finding each other. We’ve been to each other’s houses (well I haven’t been to her new condo… but one day).

When I was pregnant with Samantha I joined a message board website for pregnant women. I found the most wonderful, caring, warm friends on a web board for women who were due to deliver in August 2006. I’ve the years we’ve seen each other through so many tough life situations. I feel very close with these women most of whom I’ve never met in person. When someone has an issue they are dealing with; the group will give real life honest advice. And it comes from the heart. If it weren’t for Samantha I would never have met these women who are an important part of my life. And if it weren’t for Thomas I wouldn’t have met my first ever “online” group of friends and I probably wouldn’t have been as open to my next group of friends on the web. I heart my now in real life friends 💕.