The Typical Child.

Our oldest daughter, Alyssa is graduating high school this June. I’m amazed at how fast time has flown. It literally seems like just yesterday I was seeing her off to pre-school and she was crying for me to not leave her. I can’t help but remember her as a baby and how pretty she was/is. When Alyssa was born we were living in the first house we bought and thought we would live there forever. Two houses and two more kids later…things change.

These days Alyssa is driving (which surprisingly does not freak me out), off working her part time job or babysitting *and* planning for the next phase of her life: College. She’s planning on attending college in Manhattan at a fashion business college right in the heart of midtown. Exactly where she wants to be. I’m excited for her and I know she’s going to do well in college. She did really well in high school keeping up with the demands of the International Baccalaureate program (which is pretty much a super high honors program with the added bonus of earning college credits while in high school). I know I sound like I’m bragging but I can’t help it, we are very proud of her. Especially since she is the first child following Thomas.

When Alyssa was born I was so, so happy to have a typical child. Thomas was only 2 years old when Alyssa was born and his behavior was already off the hook. While Thomas was busy being his special needs self and I was attending to those needs, Alyssa would quietly meet every developmental milestone. To the innocent bystander Alyssa wasn’t doing anything “great”, but in my eyes she was. I noted every single one of those milestones and reveled in them. My mother and I swore it was as if she read a growth and development book and knew what to do next. I thanked God everyday that she was so typical.

So here we are almost 18 years later. Alyssa is still meeting milestones and doing what she’s “supposed” to do. God is still working in her life in a mighty way. We’re still attending to Thomas’ special needs but life isn’t as hectic as it used to be. Alyssa has been able to shine in her own typical way and that to me is fabulous.

I used to think…

Before I had my son I used to think kids who weren’t talking were never read to or talked to by their care givers, I used to think people who yelled at their kids were monsters and didn’t deserve their kids. I used to think having a child in a special ed class was a terrible “label” and it would follow that child where ever he/she may go and not with good consequences.
I used to think having a son who was labeled mentally retarded was the worst thing ever. So much so that I badgered a developmental pediatrician who wrote that in an evaluation report to also add an addendum that I as the child’s mother vehemently disagreed with his findings.

I used to think a lot of things. Used to. Then life hit with an impact. I had a son who was speech impaired for seemingly no reason when he was a toddler. I tried to read to him as well as you could read to a busy and disinterested toddler. I am a “yeller” or I was anyway. And I know I’m in good company because a lot if not most of my mom friends were yellers too. My son started receiving special education services when he was 3 years old. I swallowed my pride and accepted their “label”, little did I know that such a label is not a bad thing but a ticket to other services he was entitled to such as Physical therapy and occupational therapy. Today I encourage any labels “they” want to put on my son as it doesn’t change who he is to me, because with those labels now comes placement beyond the board of education. My son’s time being educated and cared for by the board of ed is coming to an end as of next year when he turns 21. New labels may be more appropriate for him as an adult.

I used to think depression was a state of mind and that one should just snap out of it or look around at all they have that is good in their life. I now know depression is a real chemical imbalance in one’s brain and there is no “snapping out” of it. You simply can not. Depression clouds all your thinking and makes you feel worthless no matter what riches you possess whether it be a terrific family or terrific wealth.

I used to think God was a mystical father figure only interested in us on Sunday mornings. I used to think Jesus was the son of God who died upon a cross; period. I now know with all my being that God is real; period. He is with us all the time and not just on Sundays. And that Jesus died for my sins and yours. I know now that His grace is sufficient. Jesus’ life and death and resurrection is the best example of love that I know. And I humble myself to follow him the best that I can.

Birthdays and Being an Adult.

I have a birthday quickly approaching in a little over 2 weeks. It’s not a momentous or milestone birthday, I’ll be 46. And for the record I’m okay with that. I say that now. I don’t know how I’ll feel staring at the big 5-0. I don’t feel 46 years old, although I’m not sure what 46 years old is supposed to feel like. I don’t know what any age is supposed to feel like I can only reflect on what I felt like at certain ages through the years.

Sometimes I’m amused when I’m making dinner thinking of how “adult” I am. Like here I am married, raising kids, running a household; how adult it all is. And when did that happen? Being an “adult”. Legally I know when I turned 18 I was an adult. The only thing I really remember being at 18 is feeling free. I was about to graduate high school, had a great boyfriend, a part time job and I was driving and had my own car. Life was sweet. No “adult” responsibilities in sight. So I can hardly say I personally was an adult at age 18. Nor did I act very adult, IMO anyway.

I think the defining moment in my life was when I was 24. I graduated college as a nurse and finally for the first time had a “real” job, making real money. However I was still living at home. When I did move out I remember feeling so grown up and responsible. Paying for our own wedding and getting married was another grown up step then quickly becoming parents to Thomas with all his issues was a great kick in the old adult pants.

So I guess for me being an adult was a process of steps, I was fortunate that I didn’t have adulthood thrust upon me at an early age. When I look back it was God’s plan for me to take all those steps to finally get to the point where I was prepared to be Thomas’ mother. I was never known to keep my opinion to myself, but advocating for my baby and being bold to respected medical professionals wasn’t something I was well versed in but I had to learn quick and I did.

I look at my oldest daughter about to legally become an adult this summer. Her 18th birthday is shortly after she graduates high school. I know I won’t see her as an adult even though she’s very responsible and like me at that age she is driving her own car, has a great boyfriend and a part time job. I’ll ask her if she feels like an adult. I look forward to her answer.

A new living room

We recently purchased new living room furniture. It marks a milestone for us, meaning Tommy and me. We’re taking back our house. No longer are we tripping over toys or watching the same children’s television programs over and over and over. The living room is ours again and it feels good.

Before the new furniture we had a sectional couch which was great it was big and comfy. We bought that shortly after Samantha was born so around 8 years ago-ish. Between Samantha growing up on that couch literally and the 3 cats and 2 dogs, well it had seen better days. So in between talking about renovating this house to an open concept lay out and moving the sectional around along with re positioning the television we discussed “looking” at new furniture. Ha! So much for looking. We were hooked pretty much a half hour into “looking”. The salesman was awesome and recommended we return to buy in a few days to take advantage of a new sale that was to be going on.

We did return and looked around some more. It’s funny because I find that my husband and I have similar taste. It wasn’t always like this. I used to adore a shabby chic, antique-y style. Tommy was more modern/classic. I guess I’ve changed because Tommy still likes the classic/modern style and I do too, but more classic/traditional. I don’t think I’ll ever prefer a modern style. Besides this house was built in 1935, I don’t think it can handle “modern” without looking out of place.

So anyway the new sofa, love seat, coffee table, end tables, lamps and entertainment center/electric fireplace arrived this past Wednesday. I can’t get over it. It’s been forever that we’ve had a coffee table as odd as that sounds. With the sectional sofa we had a chaise lounge so there really wasn’t any room for a table. We’re almost giddy with the normalcy of having living room tables again. I’ve promptly bought candles to place on the coffee table. It’s been forever it seems since I’ve been able to have things on a coffee table without worrying about something being broken or unsafe.

We’re enjoying our re-claimed space. I dream of reclaiming my bathroom someday.

Blame

When I’m in a good mood I just love the Lord and want to sing! I sing along to the Christian radio I always have on in the car and I want everyone else to sing with me. To know that He is God and He is in charge, it’s all going to be alright after all Jesus died for us… Then the mood shifts. And I start to question Him. Why have I gained all this weight? If God loved me I wouldn’t be struggling so much with this. Why am I in such a bad mood? Why is my daughter having such a difficult time at school?  Why is my son the way he is? I know some of these examples seem silly but this is what runs through my head. 

This time the mood was different than the others.  I at once felt guilty to be so quick to blame God. It literally stopped me in my tracks and it got me thinking about my faith. I’m so quick to praise when life is going good, I need to be just as quick to praise when I’m in “a mood” and things aren’t looking so rosy. I remember when Thomas was home for Christmas. Thomas was very high maintenance during that visit and I was having a hard time with him. Was I praising God? Nope, I was annoyed that my son is the way he is. I realized that I wasn’t in prayer and worshiping the Lord and I felt odd about it. Fake.  I did however pray for patience with Thomas. And I do feel He heard my prayer. I still listened to my Christian music in the car and sang alone and went to church the Sunday after Christmas. But I should have been in prayer a few days earlier when I was having a difficult time.  Instead I was annoyed and anxious.

This mood of mine was an eye opener. More praise, prayer and worship in tougher times, not only when all is right with my world.
 

Coming Together

I had my meeting with the Pastors at church concerning the new small  group/bible study for Moms of special needs children. The meeting went well, I had to tell Thomas’ story to one pastor who wasn’t aware that I even have a special needs child. I gave him the extreme abridged version of the past 19 years of my life. With each breath I took I noticed the pastor’s eyes getting bigger and bigger. Thomas’ story is a lot to digest in one sitting. They asked me why I wanted to do this group. I answered that it’s something I’ve wanted to do for a while but I haven’t been in a place where I could do this. Now I am in that place and it feels good. If I can help anyone with my experience with Thomas I’ll experience the truth of the statement that “God doesn’t waste a hurt”. For years I’ve wondered when he’ll use what I’ve been through. Now seems to be the time and I’m so grateful to Him.

I reached out to a few moms tonight and have two solid “yes” answers. Tomorrow I approach  more moms. I swear it’s the Holy Spirit giving me the gift of being bold. I’m hoping one Mom’s childcare situation gets sorted out so she can attend.

I’m excited to see how God is working and will continue to work as I pray for direction; for Him to guide my steps.

 

 

Signing papers

I received a packet of papers from Thomas’ school via the US mail today. There were various consents forms I have to sign every year giving my permission for Thomas to receive various medications and treatments as needed. It struck me today that I’ll always have to sign for him. Tommy and I are his official legal guardians. (Side note: no one bat an eye when we took that baby home from the hospital without any sort of training or guidebook, but good gravy we were finger printed and background checked to be his guardians after the age of 18…) Tommy or I will always have to give consent for Thomas for one thing or another, or…will have to advocate against a situation or two hopefully not in the near future.

Alyssa is looking at colleges. She’s 17 years old and by the time she goes away to the college of her choice she’ll be a legal adult. The cord will be cut and it will be final. I’ll have no legal leg to stand on if I disagree with her decisions. It’s such an odd comparison between Thomas and Alyssa. When they were small the chasm between them was not that wide. I mean we knew Thomas had issues and that there was something wrong with him we just didn’t know what and had little to no help in finding out what that was at that time in our life.  To go from remembering them both as young preschooler and toddler to now acknowledging the adulthood of both of them. One on one end of adulthood and the other on another end of adulthood is a little hard to digest some days.

It started this afternoon when the mail arrived and I realized what Thomas’ school had sent me. I filled out the blanks and signed where I was supposed to sign. I called the nurses to question a medication change but all in all it was pretty uneventful except for the tug on my emotions that this is something Tommy or I will always have to do. Approve or disapprove decisions for Thomas.

Not soon after dinner Alyssa was talking to me about colleges and dorming (she is determined to dorm and that’s ok). I enjoyed our conversation. She’s worried about the financial aspects of certain colleges and we discussed that and other fears she has surrounding getting accepted to certain schools. I wanted to tell her to keep praying on it but I was interrupted by Samantha.  I will tell her tonight to keep praying to God about the colleges. To give it to Him. He will make a way when there is no other.

I have an interesting spectrum and definitions of adulthood here in my little family.

My son and the Beach

Thomas has been in the residential school now for just over 3 years. I was thinking back to when he was living at home. He was only able to live at home for about 3 and a half years between the first residential school (from ages 8-12) and the second (ages 12-16). It was nice having him home for that time. His meds were stable, Thomas himself was stable. We were able to do things like a “normal’ family. Even go on vacation and/or to the beach.

At the beach Thomas loved to look for shells, he did not like the water at all. In fact at one outing to a beach in NJ with my best friend and her daughters I actually lost Thomas. He took off without me looking for sea shells and when I looked around for him he was no where to be found. I felt the panic rising up. My best friend helped me look but all we saw was a sea of beach goers and not a sign of Thomas. I knew he didn’t go in the water but where the hell was he?  Every story I ever heard of people hurting those with special needs ran through my head. And I felt sick. I wanted to throw up. I couldn’t imagine how I was going to tell my husband that I lost our son. I figured I couldn’t go home and I would camp out at the beach until I found him. Eventually I grabbed hold of a life guard and explained the situation. They radioed down the beach and it just so happened another lifeguard had happened upon Thomas thinking he was lost. The lifeguards radioed to each other I was told to walk down the beach to a certain station and they had Thomas. As I was walking/running down the beach I saw Thomas walking with a very attractive and fit female lifeguard. His face lit up when he saw me, it was all I could do not to cry. I took custody of him and as we started waking back to where our things were, I teased him saying he wanted to hang out with the “pretty lifeguard” he smiled and then said, “Mooooom! You left me!” I laughed and told him I didn’t leave him; he left us by looking for shells. It really didn’t matter at that point, I was just glad to have him back.

With Thomas the way he is now I don’t see us going to the beach without extra help meaning one person just for him to watch him and keep him occupied. That is if we could even get him to the beach. Towards the end of Thomas living at home vacations with him were not fun. After changing meds because of a sharp decrease in his white blood cells, Thomas was not as stable as he was in the past. His behavior had changed and he became very stubborn. Even refusing to get out of the car when we arrived at the beach. When we did manage to get him out of the car he refused to even look for sea shells and he refused to leave the beach chair with umbrella bought especially for him.

I miss walking on the beach with Thomas. Trying to bribe him with a dollar or two or five to get his feet wet. The answer was always, “No” but with a smile. He has a great smile.

Waiting and the panic.

After my interview last week the Dr who interviewed me said she would let me know if I got the job “by the beginning of next week” meaning starting today. I’ve checked my email at least a dozen times already and nada. Nothing. I keep telling myself if it is meant to be it will be but I can’t help feeling antsy and just wanting to know already. I’m not a good wait-er.

In other news we went to the San Gennero feast in Little Italy yesterday afternoon. It was nice, crowded like you’d never believe but still nice. We had an incident where our 16yr old said she wanted to look at a jewelry display, so the rest of us waited across the way for her to be finished. Five minutes pass, then 10. After 15 Tommy is getting annoyed and so am I. How long does it take to look at jewelry? We don’t see her at the jewelry stands. Now we’re calling and texting her and not getting any answers. OMG. Now I’m starting to get scared, like sick to your stomach scared. All I could think of was that she was kidnapped. With the amount of people at this feast; we’re talking literally wall to wall (or street to street) anything is possible. Tommy takes off down the street a bit to look for her. Nope. Then he goes down the other way. I’m trying not to panic. Finally he finds her. My goodness I was so, so relieved. I didn’t realize how scared I was until I felt the intense relief of knowing that she was ok. After being elated that she is safe, I got mad at her. Mad for making me a nervous freaking wreck I told her I thought she was kidnapped. Scary shit man. Just when you think they are old enough that you don’t have to worry when you go out, that someone won’t “get lost” what happens? They go and get “lost”.

I’m happy to say the rest of the afternoon went off without incident. We had a nice time in the city and even stopped to visit the 9/11 Memorial. It was incredible and so very moving. To see all those names choked you up. And the Freedom Tower is unreal. It’s beautiful. So tall and looming going straight to the sky.

In the city with my Alyssa

With yesterday being the last full day of school for Samantha, Alyssa and I decided to take advantage and we headed to Manhattan to thrift shop.  The thrift scene around here has dried up with me personally not finding the former awesome finds I’d become accustomed to.  Just a bunch of department store clothing.  Not thrilling, IMO anyway. 

So we took the ferry across to the city and promptly caught the uptown 1 train.   On the subway we were then serenaded by 2 older gentlemen, one was a former member of The Drifters we were told.  After the singing we transferred to the number 2 express train which got us uptown in no time! Alyssa being a typical 15yr old talked my ear off the whole time.  I’m not complaining I enjoyed it, I loved hearing her unfiltered point of view regarding just about everything important in her life.   We got off at 96th St. and Broadway to hit the Salvation Army there. Yes we went that far uptown :).   I love this store, you seriously never know what you’re going to find.  Sometimes you hit it big other times…not so big.  Like I’ve walked out of there empty handed with a heavy heart but that’s the thrill of the thrift, the hunt!

This time both Alyssa and I both scored.  She found the coolest pair of “genie pants” (think more attractive MC Hammer pants) that are apparently very in style right now.  The pants looked brands new and were from TopShop which can be quite spendy in price.  Alyssa also found the cutest sundress perfect for summer.  But then again she is 15 and what wouldn’t look cute on her?  I scored with True Religion denim that fit perfectly (squeal!), a zip around Kate Spade wallet and awesome cotton/linen J Crew pants.  I heart J Crew when I score it at the thrift. 

 

 

After about an hour or so we called it quits to get home early as Alyssa was getting together with friends and I wanted to have lunch before picking up Samantha. We caught the express train downtown and were all set to transfer to the 1 to the ferry terminal when the conductor made an announcement that the service to the ferry via the 1 train was interrupted and gave instructions to catch another train. Alyssa and I exited on Fulton street and oh my goodness we had NO idea where to go which way was the ferry?? After a couple of false starts I spied 2 building security guards on a corner and asked them how to get to the ferry. They were nice enough to give us directions and off we went! I’d say we walked about 10 blocks, far enough IMO.

I’d say our day was a fun thrifting success and more importantly I had a great time with my daughter.