This past week at small group (bible study) we had a talk on peace and how can you have peace at the same time as having a special needs child. I admitted that when Thomas is home I do not have peace. He is very high maintenance and requires constant attention.

Thomas graduated from his school last week; on Thursday. Tommy and I, Alyssa and Lelly and my parents were able to make the trip with us. We hit such horrible traffic I thought for sure we would miss Thomas’ turn. But God is good and we arrived just before they called his name. We are so proud of him and the joy in the pictures is true and heartfelt. We then went for lunch and we took Thomas home with us for the next 2 days.

My husband had to work all day Friday so it was me going solo with my son. I kept him busy for the morning and early afternoon by doing what he wanted to do; go to the thrift store! Of course I wanted to go to so we had a great time with Thomas picking out two sport jackets that fit him like a glove. We then hit TJ maxx for a little bit; by the time I was done there Thomas was ready for lunch.

We came home and that’s when my peace went out the window. Thomas started obsessing about me putting his name in the new to him sport jackets. I did that for him. He then moved on to packing them in his suit case and me doing his laundry. He then follows me around perseverating about his dinner visit to the group home later in the day. I needed the next three hours to pass quickly. Tommy stopped home for a minute then went back to work. Alyssa and Lelly were in and out all afternoon. Thomas doesn’t watch television, will not sit and draw or color, will not play video games, will talk about anything that comes to mind in a continuous fashion and will not entertain himself in the least. My love for this young man of mine is immeasurable but God help me to keep him busy when he’s home.

After Thomas visited the group home for dinner he told me he wanted to go back to  his school the very next morning. I told him the plan was to have him stay until after dinner, but nope Thomas wouldn’t hear of it and insisted he return in the morning.

I wasn’t sad to see him go. I was relieved and at the same time I felt guilty that I don’t have more patience. How did I handle him being home all the time when he lived here? Well for one Thomas had school during the week, a recreation program for Saturday mornings and I could count on Tommy to be home most Sundays. Thomas was also a different person on different meds. He didn’t talk up a storm, and when there wasn’t any school due to vacations or time off Thomas went on various trips run by a local developmental disabilities group. I had a network of support that no longer exists since that life no longer exists.

Thomas is back at his school and I’m sure he was relieved to go back. There are staff members and activities to keep him occupied. I don’t think Thomas knows what to do with himself without his support system that he has at school. He’ll have a different support system and life when he moves into the group home.

I have peace knowing Thomas is taken care of so well and his needs are being met. I have peace.

 

 

 

In His Presence. We live in His presence, God is with us even when we don’t feel like He is there, even when we wonder why He’s “allowing” something evil to happen. He’s is always with us, and He will meet you where you are.

When I met the Lord for he first time I was so, so angry with God. Thomas was in and out of the psychiatric hospital and I was very angry with God because I wasn’t privy to His plan that involved my son, me, my whole family. I was sitting at a traffic light listening to a cd of a band called “Casting Crowns”. The song playing was called “Praise you in this storm”. Out of nowhere I had this crystal clear vision of Jesus standing behind me. He was cupping his hand and catching my tears with the other hand on my shoulder. There He was. He met me there right where I was full of anger and confusion. After that I wasn’t angry anymore, The Lord took my anger away and I was ok with the fact that God had a plan and I didn’t know what that plan was. He was in charge and that was fine.

Before I met The Lord and realized His presence was all around me I would grow frustrated that I couldn’t feel Him.. I wanted proof that He was there. After that encounter I felt different. I felt touched by Him.

This past October we experienced the passing of my father in law, my dad had emergency surgery and was diagnosed with liver and colon cancer and my mom was starting to battle bladder cancer. It was a very trying and emotional time for our family. What strikes me the most about that period of time is the love I felt from God. I felt completely encircled by His love. Especially during my father in law’s funeral. The Lord’s presence was almost palpable to me and I’ve never felt that way before. It made me even more certain that God is always with us and that my father in law wasn’t “gone” but that he merely crossed over to heaven and was with Jesus. I miss him don’t get me wrong I miss him terribly but I know we will see each other again.

We are always in God’s presence even when that presence feels absent. The Lord will never leave you or forsake you. That is His promise and it’s a promise that I hold close to my heart.

 

 

July begins birthday season for my family. Thomas kicks off the first one on the 5th, Tommy the 9th, Alyssa the 12 and Samantha who had to have her own month; August 1st. It’s a little hectic but better now that everyone; meaning the kids, are older.Thomas turns 21 and Alyssa 19. They are 2 years and a week apart in age. Lelly and I have our own birthday month of April, I’m the 3rd and she’s the 29th.

Thomas turning 21… how is it I can remember every little thing about the past 21 years of his life yet forget to buy dental floss when I go shopping? I remember everything about my pregnancy with him. I wouldn’t drink coffee the smell made me nauseous, I couldn’t eat chicken no matter how it was prepared and I craved red meat. I remember being excited to wear maternity clothes.

I loved being pregnant. I loved being pregnant all 4 times but your first is something special. It’s all so new and scary and exciting all at once. I can’t believe it’s been 22 years since my first pregnancy and almost 11 since my last.

So summer birthday season sets off all sorts of nostalgia for me. I remember coming home from the hospital with Thomas a day early because all my night shift co workers kept visiting me at night! So I wasn’t getting any sleep…haha little did I know what the meaning of “no sleep” really was; I learned that real fast.

I’m in awe that Alyssa will be 19 this year. I really enjoy watching her grow into the young lady/adult that she is. She still amazes me. Just as much as she amazed me when she was born and then growing up. She “wrote the book” on making many milestones when she was a young child and continues to do so even now.

My last, Samantha. The youngest our last birthday of the summer. August 1st. I was due with her on July 31st and my sister said, ” Nope, this one wants her own month” and she was right. Samantha arrived at 11:37 pm August 1st, 11 years ago.  I think Samantha really likes having her own birthday month. We can’t group her in with the July birthdays her’s is too far away. The only drawback is trying to plan birthday parties for her. Everyone is on vacation at that time it seems.

Samantha is definitely her own person; nothing like Alyssa or Lelly. She’s a fun girl, loves group sports and being on a team and not that high maintenance as far as clothes or hair go.  She’s more independent at her age than Alyssa and Lelly were. I don’t mean to compare the girls but I can’t help it when the two older are so alike and the youngest one is so different. Same parents, same environment. Samantha definitely marches to the beat of her own drummer.

So in a couple of weeks birthday season will be in full swing! Here’s to everyone having the happiest of birthdays!

Father’s Day it’s the day we pay homage to all those wonderful Dads, grandpa’s, great grandpas, uncles, friends who are fellow dads and friends who are close enough to be your dad. It’s a great day.

Tomorrow we will be going upstate to go out to breakfast with Thomas, so the 6 of us can be together at least part of the day for Father’s Day for Tommy. We will also be remembering my father in law who passed away this past October.

It’s the first Father’s Day he won’t be with us. I miss Chick. As I was watching Samantha’s softball game yesterday I was thinking what a kick he would have gotten out of watching her play. He adored his grandchildren and was the quintessential proud “poppy” as my kids called him. He was an amazing father in law. He literally treated me like a daughter letting me in to areas of his life that are usually off limits to inlaws. I miss not being able to tell him about my new job and I miss the reaction of joy he would have had. I know he’s with The Lord watching us from above and  I know he’s not missing the smallest moments of our lives. It just hurts to not have him here physically.

My husband is wonderful. He’s loving, kind, generous and extremely thoughtful not to mention handsome. I have grown as a person thanks to my husband. I know I’m a better person as a result of knowing and loving him. Tommy is very selfless, a quality I really admire in him. I feel like I grew up with him since I’ve know I’m since we were 15 years old. Tommy is also very funny, he has an awesome sense of humor that easily rubs off on you. I love to laugh with him.

I hope my own dad has a wonderful Father’s Day. He hasn’t had an easy time since this past October. Emergency surgery, a colostomy, liver and colon cancer and now chemo. I admire my dad and his fighting attitude towards the cancer. These days he moves a bit slow but he still cracks jokes and is as sarcastic as always. He’s great to talk to and is quick to share your joy when you have good news to share. I love my dad and I’m oh so grateful that he’s here to celebrate another Father’s Day with us.

Happy Father’s Day to all the wonderful dad’s out there near and far.

 

Trusting God. It’s something I’ve struggled with until recently. If I have to pinpoint a time where I finally put all my trust in Him it would have to be when both my parents were battling cancer at the same time. My mom; bladder cancer and my dad; liver and colon cancer.

My dad was in serious condition this past October, 2016. He required emergency surgery which resulted in him having a permanent colostomy. I remember trying so hard to be strong but all I could do is cry when I wasn’t with him, I so did not want to cry in front of him. Even now remembering that time brings tears to my eyes.

I remember emailing my prayer warrior friends to pray for both my parents and I seriously couldn’t believe the situation. Both parents have cancer??  My prayer warriors quickly passed along my prayer request to other members of the church and I asked my church prayer team to pray for them. I find it amazing and comforting that my parents had people from all walks of life and around the country praying for them.

During this time I had a serious session with God. I handed the whole situation over to Him. God is the one in charge anyway as well as being the Great Physician. I felt a great relief when I handed my parents over to Him. I stopped crying because God has this.

My mom had her surgery and all went well considering how serious the operation was. She recovered in the time frame they said she would and when Mom went to a rehab facility before heading home; after a couple of days the staff didn’t know what to do with her. She was doing so well.

Today my mom is cancer free, the bladder cancer had not spread to any other areas of her body. I thank God for that. My dad is and will be for the unforseeable future receiving chemotherapy every other week. His legs are week from a previous battle with Guillian Barre syndrome so he walks quite slow with a walker and his voice is quite hoarse from a side effect of the chemo. He’s also lost some weight which is to be expected as the chemo changes the way he tastes good.  He’s himself though, same attitude, same sarcasm and wise guy remarks. And he’s fighting the cancer today with the same fighting attitude he had back in October. His last PET scan showed the chemo was working and he has another PET scan in a few weeks in July.

I still have concerns about my parents but handing over the cancer to The Lord released me from trying to control things by worrying. I no longer cry when I think of my dad. I know he’s fighting the best he can and that the Lord is also fighting along with him. My church is still praying for my dad as are my friends from all over the country.

My parents are both fighters and both saved Christians. They believe in Jesus as their savior and Lord. I have nothing to fear for them. I have complet faith in the Lords plan for them, whatever that plan may be. Thy will be di

It’s today. Thomas’ very last IEP (Individualized Education Plan) meeting.  I’ve been attending these meetings since Thomas has been receiving special education services beginning at the age of 3 years.

I remember when Thomas was 3 and  touring special needs preschools with my mom and Alyssa in tow. I didn’t want to be there and was holding back tears. Things weren’t supposed to be this way. My child wasn’t supposed to need special education, I was angry at that time.

I think I remember just about every IEP meeting we’ve had. On one occasion a dear friend Diane came all the way from Long Island to attend one with me. I was fortunate in that I never really had to fight for services for Thomas. He was obviously speech impaired so there was the speech therapy and he always needed physical therapy and occupational therapy to work on deficits in other areas. It was an occupational therapist who taught Thomas how to tie his shoes. I was so happy when he mastered that.

I’ve attended most of Thomas’ IEP meetings by myself. On a few occasions I did have an advocate accompany me. That was the best because an advocate wants to get things done and knows what to ask for. Plus an advocate isn’t emotionally invested in your child; you are emotionally invested and it’s easy to lose one’s temper as I have on more than one occasion. It didn’t matter to anyone that I lost my temper on they always kept calm. It was very frustrating to get people to see your child the way you see them, as not just a number but a real person. My advocate at the time told me to request independent neuropsychological testing. How was I supposed to know that you could ask for that?  It’s a shame that most things you can request the district pay for are well kept secrets. I encourage anyone who has a child with an IEP to try and get an adovacate to accompany them to the meetings.

So the meeting happened and now it’s over. It was certainly anticlimactic in my opinion. I don’t know what I expected, there isn’t anymore drama or arguing. He’s graduating on the 22nd and is eligible for the summer session. After that it’s over. The board of education will no longer be responsible for educating my son.

In the meantime we’re still waiting for the State to move on getting Thomas into his group home. Thomas had been very patient in his wait. He’s ready to move into the group home and move on to the next thing in his life. He surprises me sometimes; my Thomas.

So I’ve decided to make the most of my time off by getting to the gym on the mornings I have nothing going on. I’ve been driving Samantha to school instead of her taking the school bus; again because I’m home. After I get her squared away I hit the gym. I really do enjoy going. Most times I’m by myself, until Lelly is finished with finals and regent exams. Then I’m sure she’ll want to go with me. We like different things though. I really enjoy doing “sets” on the machines and working specific body parts. Lelly likes taking classes like the cycling class or Zumba. I’m not a Zumba person so she’s on her own there.

I remember flat out refusing to go to the gym. Tommy would suggest it over and over and I would tell him flat out no. I was intimidated and I was certain there were only “fit” or perfect body people there. I was almost giddy when I started at this gym and saw all different body types and ages working out. It makes one feel more comfortable to see you’re not the only imperfect one.

I haven’t lost much weight but my clothes fit me better and I just feel healthier over all. On the wardrobe end I’m up to 2 pairs of gym sneakers, last month I had none. I see a trend happening here…I mean I can’t wear navy blue with everything can I ? Oh no, no. I am even able to use one of my handbags as a gym bag. It’s a nylon bag that is just the right size, waterproof and shoulder carry.  Perfect.

Tomorrow will be a gym day. I’m looking forward to it.

 

 

 

 

 

 

I wish I knew beforehand how much I would worry about my children. I understand now that one never stops worrying about their child even when they are adults as per many conversations with my mother and my in laws.

When they are babies and young children you worry more about yourself as a parent. Am I doing the right thing? Am I making the right decision? Is this the best school for him/her? The list goes on. Samantha has made me worry more than the girls out together. Oh crap she’s being bullied at school, oh crap her reaction to that situation could have really been better. I’ve had more conversations with that child of how I didn’t raise her to act in xyz manner.

I’ve noticed I worry about my high schooler, Lelly. Is she happy? Is she making the right choice of program at school? Have I given her the best advice? OMG she was chosen to be an exchange student for the next school year…am I happy ? Yes; am I worried? Of course I am. She’ll be in Europe, hardly a hop, skip and jump away. I can quiet that worry with the fact that this won’t happen for a matter of months. So there is time…It helps tremendously that Lelly talks to me. She’ll tell me what’s going on in her school life and areas that aren’t apparent and in my face.

Alyssa, my college student; I don’t think I worry too much about her. More like concerned and interested in her life. Thank God she is very open with me about her life and various situations ranging from college classes, transferring colleges, friends, her job, her GPA, etc…Alyssa likes to talk and I enjoy listening.

Thomas, oh my Thomas. The child that has caused me to question my parenting  on a daily basis when he was younger. It didn’t help that I had an extremely unsupportive pediatrician. There were too many times I was blown off with my many concerns. It was crazy I know now looking back. And it wasn’t me with the problem, it was her. She was ill equipped to provide care to a kid as complex as Thomas and failed to realize and admit it. I’m glad I had the courage to rebuke her and sought help on my own for him. There was a lot of prayer going on at that time. Prayer for direction and the Lord never failed me.

Like my parents and their parents before them I know now I’ll never stop worrying about my children no matter how old they get. I suppose my way will most likely be better than their way but I have to understand that it is their life. At this stage I watch in silent observation as my oldest daughter makes life decisions. What classes she’s taking in college, what kind of job(s) she’s doing to make extra money.  I watch how she handles herself and I’m proud of her. I also have the option of voicing my opinion. An option I decline at this time.

Nothing anyone can tell you or any book you read can properly prepare you for what it is like to be a parent. You can read books about parenting techniques and apply those techniques as you see fit but I don’t think those books can help with the worrying aspect. A very wise woman once told me, “You’re only as happy as your most miserable child”.  How true.

 

I had to to go to the unemployment office yesterday to attend a mandatory session before they will pay me benefits. It was pretty boring and a bit informational.  I noticed the population was very diverse just about every stage of working life represented. The whole thing took about 90 minutes. I was surprised to learn all the offerings of the labor office. Like help with your resume, use of their computers and fax machines, and job postings. There was even healthcare organization represented with hopes of filling vacancies they had. I was pretty impressed.

My son graduates from his school at the end of this month. Thomas turns 21 this July and the board of education was/is responsible for educating him until the age of 21. I can’t believe it. What’s funny is that I remember just about every little thing of Thomas’ life. Every eval, every school, every teacher. Who was helpful who was not. Who Thomas liked who he did not. Every IEP meeting I attended calm and not so calm and who supported me and who did not.  Who came all the way from Long Island to be with me (Diane…) for an IEP meeting. I don’t know if I remember everything about then Girls the way I do Thomas. I’m sure it’s because he was my first and we had a not so typical path almost from the get go. When I think back it’s all just so crystal clear. Everything. The good and the not so good. The happy and the not so happy. I can list the meds he trailed and failed and what worked for him the best. I can tell you Thomas was always great about getting his blood drawn, even as a very young child. He is and will always be an amazing guy; my Thomas.

I don’t know if I’m ready for this next chapter in my son’s life. True adulthood. Thomas will eventually be living in a group home. We are still waiting on the state to approve the one that is here where we live. I never thought this would take as long as it has. When he does live at the group home Thomas will attend a day program which hopefully will be some sort of vocational program. I can’t tell you how much we are looking forward to him moving to the group home. To have our son be so close to us geographically will be such a blessing. We can’t wait to have him over for dinner or go to the mall during the week one evening knowing he’s living 10 minutes away from us. Things so simple won’t have to be exclusively planned out.

So there are my musings for a Thursday morning. I hope everyone’s day goes as smooth as possible.