special needs

God’s light and wounds.

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I’ve been feeling down the past few days.  It’s not major but not minor either. But on the upside, Daniella and I had an interesting conversation last night.  She asked me what do Nancy and I talk about, but…I don’t have to tell her if I don’t want to.  I thought that was very sweet and insightful for a 12 year old.  I explained that we talk about almost everything and yes sometimes we talk about her and her siblings, but not always.  That Nancy listens and may explain why I might feel a certain way or pick up on things that I don’t feel are important.  I have a caring daughter.  I’m glad she feels comfortable enough to ask me such questions and in a mature manner.  

I’ve been praying in hope that a The Lord will relieve this down-ness. One of my wonderful choir friends said something to me last Thursday that is sticking with me still.  She said that God uses your weaknesses and wounds through which His Light spills out of you.  You are then able to bless others when you expose the humble, hurting parts of yourself.  I found this really profound.  This blog is/has been an outlet and source of healing for me. I’ve received such feedback to keep writing, something I never expected, I had no idea anyone would even read what I write.

I can only hope God’s Light spills out of the parts of me that are wounded and that that light is shining and touching someone else.

I really heart my choir family. My friend received her words from a book “Dear Jesus” by Sarah Young.

The Mall

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I was in the mall with our youngest, Samantha and I noticed a young man holding the arm of another young man. I looked again and noticed it was an outing of special needs young adults. Sometimes seeing this makes me sad. Not because the people are special needs, but because my special needs young adult goes on these outings without me.

Before everything fell apart when we changed medications (due to low white blood cell counts caused by one med), I had a picture and plan of what our lives would be like. It all seemed to be fitting into place. Thomas was in a great school, we both adored the staff, he was a part of great recreation programs and Thomas was on the waiting list for group homes once a space became available after he turned 18.

Don’t get me wrong I’m incredibly grateful for the school Thomas attends now and I know we couldn’t continue to live the way we did any longer. I know all this logically. However logic and emotion usually don’t reside together, not in my mind anyway. It’s not all the time that I get sad, just here and there. I guess I feel sorry for myself and that sounds terrible, to me anyway. I don’t like pity parties. When I see these young adults I remember “the plan” and how it’s no longer viable. Then I remember that I was never in charge anyway. God is and He has his own plan. One I am not necessarily privy to. I have to trust in Him.

As much as I mourn the change of my plan, I do enjoy the quiet environment of my home these days. It’s not always “quiet”, there are 3 girls living here, one a teen and one a pre-teen. But it’s not chaotic either. And I’m not emotionally exhausted trying to keep everyone peaceful and myself safe. It’s kind of a sucky trade off to see my son turn into someone I would fear, but God will use this for his glory. I know he will.

There are some things I miss so much about when Thomas was stable on that particular medication. I will never forget one time, about 3 years ago, right before we had to stop the one medication. Thomas and I were in Manhattan to see his psychiatrist. Saks Fifth Avenue was a few blocks from the doctor’s office and my husband had just informed me I could purchase my dream handbag. There was a boutique in Saks. Thomas and I get there and he helped me pick out some bags to try on. The whole time asking me, “You gonna buy it Mom?”. Meanwhile I was overwhelmed and hyperventilating as I never in a million years saw myself buying this designer handbag. I went outside to call my husband and ask him if I could but it there at Saks without him present. It took a while to get him on the cell phone so Thomas and I walked to a find a pretzel vendor. Just as we found a pretzel guy, Tommy called back and said to get the bag, to open a Saks account as I didn’t have our major credit card with me. I told Thomas I was getting the bag and he practically ran back to Saks! I had to keep up with him, lol! Thomas was walking so fast saying “Excuse me, my Mom’s getting that bag!”. We arrive back at Saks and the salesman was so great to Thomas. He didn’t patronize him. Thomas pointed to the bag and confidently said, “That one, my mom’s buying it!”. Unfortunately I was unable to open a Saks account as I didn’t have my major credit card with me. Arrgghhhh!!!! I tried to explain that if I had the credit card I wouldn’t need to open the Saks account. They wouldn’t budge so I had to explain to Thomas that I didn’t have the right card but I will get the bag another time. I’m not sure who was more disappointed him or me.

About 2 weeks later I made my way to The Mall at Short Hills in NJ. Tommy couldn’t come as Samantha was sick. You know Thomas came with me, I had to have him come along to purchase “The Bag”. The whole experience wouldn’t have been the same without him

A short visit

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I’m sitting here right where I’m supposed to be wondering what the heck just happened.  Our son came home for a weekend visit.  We had a great time a couple of weeks ago at his school picnic.  He was wonderful with me.  But this weekend, no.   It started this afternoon after church with a bit of defiant behavior nothing huge or big until you look back.  this afternoon Thomas absolutely did not want me along for the trip to Home Depot with Tommy.  I was going that was it, that’s the way it is.  Tommy managed to coax Thomas to getting in the car.  Thomas stated loud and clear that he wasn’t speaking to me. Fine.

Home Depot went well we decided on and bought a new upstairs hallway light fixture. While Tommy was installing said light fixture my son felt the need to verbally insult me to the point where Tommy asked him to go downstairs. No problem. We have dinner and all seems calmer. That’s cool. Around 7pm while Samantha and I were cruising the American Girl website discussing the finer points of American Girl Dolls and which one would make the better Christmas gift, Thomas walks over and starts verbally berating me. After about 20 minutes Tommy got him to sit with him on the couch and watch tv. Thomas still isn’t done and announces that we shouldn’t call him at school and he isn’t calling us. Fine. Then Thomas decides he wants to go back to school NOW. Tommy tells me to pack his stuff. I did as I’m told and they are on their way to Yonkers.

I don’t know why I’m writing this out. My head still doesn’t understand why this child feels he can say things that are not very nice to me. Why I am his target. I’ve heard all the professional explanations and logically I know it’s not my “fault”. I know if he were a typical child he would say things that aren’t “nice”. I get that as I have a typical 15 yr old. However she doesn’t look for me to aim insults at or call me names that aren’t true.

We are not used to this behavior. We don’t live this way anymore. Praise God I have a level headed husband. The moment Thomas said he wanted to go back Tommy was on his feet. Tommy is my greatest defender. Every day I thank God for putting him in my life.

Standing still ?

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I know I wrote “Moving Forward” recently.  I really believed I was going someplace.  Where?  I have no idea.  This past  weekend it hit me hard that I’m not going anywhere and I felt the depression sneaking back in.  I don’t think I’ve ever been so frustrated (aside from trying to get help for my son).  Now I’m fighting for me and I worry am I strong enough?  Determined enough?  

I feels as though I have tackled and defeated the demons that plagued me concerning Thomas.  But the ones plaguing me still need to be conquered.  The fear and uncertainty of who I am or want to be other than a wife and mother Is rocking my world.  In no way do I wish to abandon my present roles.  I want to fully embrace them while creating and nurturing a separate role that is mine alone.  Make sense?

Thank God I was able to locate a new to me thrift store in Manhattan and score a pair of True Religions. At least in my thrift life all is right.

Moving forward

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I really wasn’t sure I would be posting with this title.  Moving forward seemed so far away when I started this blog.  I didn’t even know if I would be able to write out my story. Part of me worried that in looking back would I be also able to move forward?  I did write it out and I’m proud of myself.  So now that I can even be happy I need to do something with my life.  

I’d love for my business to take off.  I have shopped for friends and it is wonderful! I truly felt as if I was doing what I was supposed to be doing and everything fell into place. Part of me debated returning to school but I wonder if I’m really all that driven. It’s also not something I’ve always wanted to do. When my kids were all younger I loved going to thrift stores and yard sales but at young ages they weren’t all that cooperative. Now that everyone is in school and older with different needs than toddlers, I enjoy the freedom of this time in my life. What I don’t enjoy is the uncertainty and frustration in launching my business.

I’ve been a stay at home Mom for the better part of the past 16 years. This was a decision my husband and I made and it worked…most of the time. It wasn’t until the depression hit did I feel worthless or “less than”. I still battle those feelings. My husband’s schedule; the one we built so I can stay at home does not allow for me to work unless the kids are in school. I haven’t seen any job postings for “part time 10am to 2pm.” Another reason I wanted to start my own business, so I could work on my schedule and time.

It’s difficult to explain the feeling, the thrill of finding a treasure at the thrift. Even if it’s not my treasure, when I find something whatever it is that a client wants I have to suppress a squeal many times :). Also the process of searching, looking for that “something” is an exciting feeling. I guess it could be called the thrill of the hunt? Whatever, I love it and I love the inner peace I feel when thrifting. I am in my own space/world and very rarely do I let anyone in. I’ll take other people thrifting but only the precious few enter my space. A good friend said he couldn’t wait to read about my “zen” while shopping. Well there you have it 😉

These days

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Image

These days I’m feeling better and dare I say happy at times? I told Nancy this and she was thrilled for me which I thought was really sweet.

The picture I posted is me at a recent festival/fair I attended to promote my business. I am a personal shopper specializing…wait for it…specializing in the thrift! Yes I am :). I have a website http://www.nayaudo.com where I have some of my current inventory. I mainly take requests of a designer or style of clothing one is searching for. If I find it at the thrift my cost is low so your (the customer) price is low as well. I’m more than happy to look for just about anything for anyone. Clothes and shoes though let’s not get carried away.

So getting back to me being happy. I don’t feel odd or euphoric I just feel like “me” and it’s been so long since I’ve felt this way. I’m not 100% and still on the quiet side and I can get lost in my thoughts and insecurities. But I’ve learned to open up a bit especially to Tommy. I take medication too, something I neverever in a million years thought I would do. Part of me felt like a hypocrite as I was terrified of meds, meanwhile my son takes meds. I’m over that now and honestly if I need meds for years or however long my doctor feels necessary I’m ok with that. Depression is effin serious man.

I had thoughts and said things when I was depressed that I couldn’t imagine thinking or saying when I’m just “me”.
Depression is real, it’s more than feeling blue and you can do something or treat yourself to snap out of it. It’s dark and scary and can be dangerous and not a place I want to revisit.

As scary as depression is asking for help can be almost equally as scary. It was for me anyway. As I waited for the elevator to see my psychiatrist the first time I wanted to throw up. I was so, so nervous. But once I was in his office and completely honest about what I was thinking and how I felt, I wasn’t afraid anymore, actually it was good to get it out to someone I knew wouldn’t judge me and wasn’t afraid of what I was saying. I have a wonderful doctor and I’m sure I’m fortunate to have found him without much searching. He is in Manhattan so I have a small commute but it is so worth it, plus there’s a Goodwill across the street. ;).

Keeping the faith

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I have to say when I was at my lowest during my depression is when I would feel so far from God.  I wasn’t angry with him but it was difficult to pray and worship, but…once I started it was wonderful and I would remember how much I wanted to praise Him and thank The Lord for literally holding me up because I know I wasn’t standing on my feet due to my own strength.   I listen to contemporary Christian music when I’m home and especially in the car.  Those songs were gentle reminders of the grace our Lord has gifted to us as well as reminding me I wasn’t as useless and a loser as I thought I was.  That God The Father does love me.  

There was one particular time I was on my way to visit Thomas at the hospital. I was by myself for the 2 hour ride and found a Christian radio station that broadcasted sermons about a half hour long each. I believe this was either just before or just as I was starting to see Nancy and Dr. L. The Pastor on the radio was talking about suicide. That some religions believe you will go to hell if you commit suicide. This Pastor didn’t believe that instead he talked about how your body is a gift from God and how could you destroy that gift? He kept enforcing our body was this “gift” and you don’t destroy something from God. I can honestly say this Pastor saved my life. I was such a mess at that time and kept it all to myself, I didn’t have the words and everything seemed overwhelming. I believed friends and family were afraid of me that they didn’t know what to say to me. My dearest friend Jackie called me when it seemed I was feeling so alone. Every. Time. That was The Lord directing her. No doubt about it.

Every day my husband would text me, morning and afternoon to make sure I was “ok”. When I was with my husband was the only time I felt “safe”. He still texts me every morning.

One of the women I used to attend Bible study with called me just about every week to say hello and ask how I was. Many times I could barely answer her to say “I’m fine” or I would start crying. I’ve told her she helped save my life with those short, weekly phone calls. She was absolutely being guided by the Holy Spirit and I’ll never be able to thank her enough.

Cheryl the pastor’s wife told me she had me in her prayers when I never even knew it.

The Lord was with me, holding me up when I needed him to. He sent radio Pastors and friends long distance and close by to let me know I was not alone. He gave me a thoughtful husband. All the little things add up and can only equal the work of Him.

What to do with myself?

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When September, 2012 came around I decided we/I needed a break from running around.  I didn’t encourage any extracurricular activities and thankfully it went unnoticed by the girls, until around November.  The thought of running here and there like I did last year was too much to even think about never mind actually do. The year before the girls had taken gymnastics and even Thomas has a class which was run by “On Your Mark” an agency that serves the developmentally disabled. I thought it was the coolest that he was in that class and so did the girls but after a few hospitalizations Thomas refused to go and no amount of pleading or cajoling would change his mind.

If Tommy was home I would take the girls and stay to watch them in the waiting room of the gym. Most times there was all this small talk and chit chat from the other parents waiting. I couldn’t talk much or participate my depression was that bad. I would look down or away at anyone who looked my way. To be honest I found most of them annoying. I mean how does one make small talk when the only thing rattling around in your brain is how useless you are? It’s a terrible state to be in. There were many times I sat there holding back tears due to the horrible things I thought about myself.

In the meantime when Alyssa and Daniella were asking me why wouldn’t I talk to anyone. I told them flat out I didn’t like the other parents and I was happy to be alone. Towards the end of the school year I did get friendly with another mother who happens to live around the corner. She is one of those people who I’d call “low maintenance”. She had no drama and pretty much kept to herself as well. Perfect.

I was seeing Dr. L and trialing different meds. Some would work for awhile and then stop working. He would up the dosage, I’d gain weight and get pissed but then the increase would kick in and I could deal with the weight gain. It was a roller coaster and not a fun one at that.

I couldn’t stay home because I would be alone with my thoughts and that wasn’t safe. I couldn’t go to the mall everyday and shop, my husband would’ve had a cow and rightfully so, getting a job was out of the question as I was barely holding it together as it was. This is where the thrift shopping comes in. I could shop or just go through racks on a mad hunt for designer items. I’m guessing I have a very serious face while thrifting. Alyssa came with me a few times and said, “oh my gosh Mom! You should see your face!” That made me laugh and it makes me smile to this day. Not many people talk to me when I’m at the thrift store.

I also became a snobby thrifter. I refused to buy anything I could “afford”. I only wanted things I would never pay retail for as the retail cost of those items are crazed. An example is denim. I would (and still do) only buy premium denim such as Citizens of Humanity, Seven For All Mankind, Madewell, etc… On my birthday I scored a Chanel top. The prices were so low it was awesome.

So there you have it my answer to getting out of the house when you are suffering from depression: Thrift store :).

After the Sail school

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So as you can imagine our house was fairly quiet after Thomas was admitted to the residential school.  Honestly I don’t remember much about the month of July with the exception of celebrating 3 birthdays.  Tommy, Thomas and Alyssa all have July birthdays.  For Thomas’ birthday we took him out to dinner at this Irish Pub down the road from his school. Daniella made him a cake and the waitress was so thoughtful, she put it in the kitchen for us until after dinner. When we were ready we sang “Happy Birthday” and the waitress brought out the cake with plates and a cake server. I thought that was really sweet. Leaving Thomas was really hard. He was only at the school for just over a week but there was no way we wouldn’t celebrate.

In the middle of July, Tommy wanted to get away so we stayed overnight in Wildwood, NJ. It was nice, we went to the beach and stayed at a motel right on the beach. We all had some sunburn so the next day we hit the outlets in NJ on the way home. Tommy and I were both not right but it was good to get away for a little bit.

In August we went to Myrtle Beach, SC. We stayed at a friend’s condo. We had gone there the year before after Thomas was discharged from the hospital. Going without Thomas was difficult, everything we did reminded us of the year before when he was with us. In a weird way I’m glad we went because it forced us to get over doing things as a family without Thomas.

After Myrtle Beach I don’t remember much of the summer. To this day I’m surprised at what I don’t remember. What I do remember is feeling like a failure as a mother. That after all the running around to see all these doctors and specialists, all the evaluations and medications, hospitalizations…residential school was the end result for this child I love so much. I felt like that for months. I addressed this mostly with my therapist, I mean how do you explain this to friends and family?

The Sail School

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So after finding out there was another boy vying for this one open space, Tommy and I were frustrated. We came home and I called Cheryl, the Pastors wife and she prayed for us. About a week or so later Admissions Woman called and made an appointment to bring Thomas up to the school. To say we were hopeful is an understatement.

We arrive and we were met by Admissions Woman and another staff member. For the life of me I can’t remember her name or title. They did a mini assessment of Thomas, asked a few questions and then they asked Tommy to take Thomas out of the room so they could talk to me. It was then I was informed that the other boy had filled the available opening. My face froze, I didn’t know what to say. All I thought of was now I have to explain this to my husband. That he took a day off work for nothing. I couldnt speak, couldn’t even ask them why they had us come there knowing there were no open spots? I thanked them for their time and headed to my husband and son, both waiting in the car. I told Tommy and he was angry. I didn’t blame him. This was in May, 2012.

Fast forward to June, 2012. Admissions woman calls me and says there will be an anticipated opening the end of June. Praise God and endless thanks to our church family for all their prayers. This is perfect timing because Thomas was just admitted to the hospital for aggression towards me. I was given an estimated date of admission to the school. Thomas was discharged from the hospital and we had 2 weeks to get through before the admission to the Sail school. We tried to prepare Thomas the best we could he already knew what is was like to live at a school away from home. My heart hurt even though I knew we couldn’t go on living like this. Thomas went to bed and I stayed with him until he went to sleep, staring at this young man, my child, my first. I cried.

Once again I had to mark my son’s clothes and socks with his initials. I don’t remember much except I did it. The day of admission arrived and I went alone with Thomas. Tommy had to work, he was the only person I would have wanted to go with. I didn’t want to make small talk with anyone or talk period. It was a Thursday. I left the house around 2 pm and there was decent traffic on the George Washington Bridge. It took us at least another hour to arrive. We were late.

When we entered the Sail school we were met by a staff manager, Admissions Woman, and the nurse. Everyone was wonderful. Thomas refused to leave my side for a look around or a tour. I had a ton of paperwork to read and sign, make sure they had his IEP for school, make sure they know due to his meds Thomas needs sunscreen, etc… After a while Thomas grew bored and agreed to go outside to the playground with a staff member. Before I could speak the word “sunscreen” the staff had already put it on Thomas.

One of the hardest things I had to do was give the Nurse Thomas’ meds. I handed over his clothes with no problem but to hand over the medications was really laying down and admitting I couldn’t have him at home anymore. To me handing over his meds was the equivalent of handing them my son and with him my complete trust. The nurse was wonderful and understood when I told her how difficult this was.

After a while there was nothing left to do but go home. All the papers were signed, they had his meds, I gave the school the history they wanted…it was time to leave. I said goodbye to Thomas. He became upset and started crying, I held back tears and after many hugs and goodbyes I left. I ran to my car crying. I sat there. I called Tommy but I don’t remember what we said to each other. After I calmed down I drove home, by myself and I listened to Christian contemporary music.

The next day my stomach became upset and I was sick for 3 days. I cried and cried those 3 days. The Lord was with me as he made sure the girls stayed occupied so I could be sick and cry in peace.

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